Crystal from LivingWellWithGastroparesis.com commented recently that she has a standard answer when people ask her how she is: "It's been a lot, but we're hanging in there."
I say the same sort of thing, and wonder how many other people gloss over the difficulties inherent in living with a chronic illness of any kind.
One of the problems for me is that I smile a lot. I don't drop the smile for many people, even for my doctors, so the general consensus tends to be that I am doing well. As a result of this, I somehow managed to slip through the net of follow-up with my gastroenterologist. I thought that I was doing ok, and that I could cope without any help. My doctors thought that I was doing ok because I didn't contact them to find out why I hadn't been sent an appointment.
By the time I did see my doctor (at least nine months later than I should have seen him) things were not good. I was severely anaemic, acidotic, and almost bedbound. I told my doctor that things were not good, and he immediately arranged for me to be admitted to hospital. I couldn't even cry with relief because I felt too ill. Instead, I lay across the seats in the waiting room and concentrated on not vomiting while I waited for a bed on the ward.
How did things go so wrong?
I think it started when I left hospital. I had been in hospital for almost a month, and was desperate to be allowed home because we had guests coming to stay with us. This deadline meant that I absolutely jumped at the chance to be allowed to leave, and didn't make sure that everything was in place to support me as an outpatient.
When I left hospital last year, on a Wednesday or Thursday night, I didn't even have enough medical supplies to get me through the weekend. I had no follow-up arranged with either my Gastro doctor or dietician, and couldn't get hold of my GP at such short notice. I was being sent home on tube feeding, having not reached any of the feeding targets set while I was in hospital, and without any clear guidelines.
How will this admission be different?
While we know more about the problems this year, and have a clearer diagnosis, the situation isn't that dissimilar. I am actively losing weight (one of those rare situations in which this is not considered a good thing!), am malnourished, anaemic, and experience severe pain, nausea and bloating in response to even the lowest rate of tube feeding. Last year we tried a number of different feeding preparations (low calorie, high calorie, semi-elemental) and lots of different ways to increase the rate. We tried feeding at a very low rate, 24 hours a day, and gradually increasing. We tried increasing rapidly in an attempt to shock my body into cooperating. We tried regimes that involved timed increases and decreases in rate. Nothing really worked, and nothing has really changed.
Currently, I am on TPN (complete nutrition, given to me through a drip into a large vein). It's great as a short-term solution to stop the weight loss and provide my body with some of the nourishment it so badly needs, but there are serious risks and complications, so we are all working towards getting my gut working!
Before I go home, I need a plan to follow - how we are going to increase the rate of feeding (or how I'm going to stay nourished and hydrated), and I need to know who to contact if things go wrong. Going wrong is something that also needs to be carefully specified - I want to have clear goals so that I know if I'm not meeting them. I want to have a time frame in mind, with an appointment booked for the end of that trial period.
I've talked about 'SMART' goal-setting in the past (as described by Paul Meyer in Attitude is Everything), and this is something that I intend to use again when we're discussing how I'm going to manage when I leave hospital.
1. Specific goals, and a specific plan telling me how to achieve those goals (e.g. increasing the rate of feeding by 1 ml/hr per day, up to a target rate of 80 ml/hr)
2. Agreed parameters for me to Monitor/Measure so that I know if things are not going according to plan. This is important. Doctors (and other medical professionals) are often vague about this, saying "Get in touch if things get any worse (or if things don't get better)". This leaves people with the dilemma of knowing that things have deteriorated (but maybe not enough to bother the doctor), or not improved (but maybe they should give it another day or two). Numbers are helpful, e.g. body weight, calories per day, pain score.
3. It is important for the goals to be realistic and Achievable. Nobody benefits if I go home from hospital intending to gain 1 kg every week and increase my feeding rate by 20 ml/hr every day. We know that my body can't tolerate that sort of feeding rate. Setting unrealistic goals is one of the surest ways for me to get disheartened, and probably end up back in hospital, sicker than I was before.
4. The goals and things to monitor must be Relevant to the situation. Monitoring my blood pressure or body temperature, for example, are useful things to do, but aren't directly relevant in determining whether I'm meeting my nutritional goals. Try to narrow down the list of things that can be measured to ensure that you focus only on the most important. Anything else just clouds the issue.
5. Set a Time limit on your goals, and be sensible about it. When I leave hospital after this admission, I hope to have gained weight and to have increased my body stores of various nutrients. This might be enough to keep me alive for several months, even if I fail miserably at tube feeding, but it would be far better for me to meet with my gastroenterologist or dietician after 3-4 weeks to discuss progress than for me to keep plugging away at my goals, independent of medical supervision, until I am a skinny wreck! Timely progress assessments will allow me to modify my goals and methods, and to put extra support in place if necessary, before I crash and burn.
In addition to the SMART categories, I will ask my team for their 'deal breakers'. These are the things that cause all other plans to grind to a halt. In my case, getting a high temperature has its own set of rules. If I start to run a fever, the SMART plan goes on the back burner and I have to seek urgent medical help. A more relevant deal breaker might be if I drop below a certain body weight, or fail to meet my daily calorie target for a specified number of days. These things are important enough toindicate that the current plan is not working, and that we need to regroup more urgently and come up with a new plan.
It is helpful to have these 'deal breakers' written down and specified, with a plan of action in each case. This is often presumed to be in the realm of common sense, but I can promise you now that my common sense goes out of the nearest window when I'm trying to avoid a hospital admission. Having a written (and agreed) protocol in place means that I have no 'wiggle room' to pretend that I didn't understand, or didn't think it was that serious.
I've been quite specific in my examples, referring to my own struggles with my digestive system, but this could just as easily apply to someone with rheumatoid arthritis, lupus, asthma or diabetes. Or pretty much anything else. Substitute your own symptoms and goals, and there you have it!
Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Wednesday, 1 May 2013
Wednesday, 23 January 2013
Being Prepared for Surgery
Before we go any further, you should know that this blog post does not contain any medical advice. There are no exercises, no medications (or alternative remedies), no recommendations for tests or monitoring, and no diet guidelines.
So, if this isn't a medical guide, what is it?
This is a list of things that I do in the days or weeks before planned surgery to make my life easier in the days and weeks after the surgery. Of course, the nature of the surgery will change some things, but I'll try to be as general as possible.
Here in the UK, most people will know their surgery date at least a month in advance (for routine, non-urgent procedures). I like to use that time to think about the effects the surgery may have on my life while I'm recovering, and try to come up with as many solutions as possible before the problems have a chance to rear their ugly heads!
In my opinion, there is almost nothing worse than feeling weak and feeble, in pain, limited by wounds/dressings/plaster casts. Add to that the feeling of unwashed hair and skin, unwanted body hair, and flaking nails, and it's almost a recipe for disaster! Here are a few of the things that I do to prepare my body for surgery and to keep myself looking as normal as possible afterwards.
If your hair is coloured, make sure you get your roots done, preferably just before surgery, so that it will look fresh for as long as possible while you recover and build up enough energy to get to the salon for the next colour!
Styling your hair may be another hurdle, especially if the surgery affects your hands/arms/shoulders, or is likely to leave you feeling very weak. I recommend investing in the following basic kit:
1. Dry shampoo: Having hair that looks bouncy and freshly-washed without getting out of bed is like a miracle! If possible, try a couple of brands and stock up on cans of your favourite in various sizes. You may still need help to apply it, massage it in and brush it out again, but it still takes considerably less effort for both you and your helper than a full shampoo and conditioner, plus it doesn't leave your hair wet, so no risk of getting chilled (or getting wet bedclothes)
2. Alice bands and 'crocodile' clips: These are enough to hold your hair back from your face, even if you have one hand out of action. Some people find the fabric bands easier than solid ones, but I'm a fan of the solid ones. The wider the better, in order to cover as much hair as possible! Having the crocodile clips as well means that you can try out a variety of styles with minimal effort or assistance
3. A wide-toothed comb is great for gentle hair-styling (or just detangling); if you can get one with a long handle, so much the better!
If your surgery means that blowdrying your hair is not an option, there are two things you can do. The first is to resign yourself to having a different style for a few weeks, working with your natural hair texture. As you'll be giving your hair a break from heated styling tools, it's a good opportunity to use intensive deep conditioners. Put a soft towel over your pillow and apply the conditioner. Massage your scalp well, and then comb the conditioner through to the ends of your hair. It can stay there until you next wash your hair. Not particularly glamourous or attractive, but your hair will be in better condition afterwards! The other option is to book a course of regular blow-dry treatments at your hairdressing salon. It's a lovely thing to do to pamper yourself, and may be the only way to get your hair washed and styled properly if you have an arm in a cast, but consider how you're going to get to and from the salon if you're not up to walking and not allowed to drive.
1. If you wax, book a wax prior to your surgery: If you don't wax, think about whether you're going to keep up with whatever method you normally use, and whether it would bother you if you didn't keep up with it. Waxing lasts for 4-6 weeks for most people, and there's nothing quite like feeling smooth and polished when you're a bit weak.
2. Simple cleansing wipes
3. A pleasantly fragranced deodorant (I find spray easier than any other method of application)
4. A real sponge and a mild liquid soap: it's hard to rinse properly if you're washing in bed or in a chair, but it's not the end of the world if a mild soap stays on your skin - aqueous cream can be used instead of liquid soap - it doesn't feel particularly 'cleansing' but it does work, and it'll leave your skin lovely and soft
5. A luxurious moisturiser: it may be more difficult to apply, but having the luxury of my favourite scent as well as soft skin is worth the time it takes to apply it! There are lots of different types of moisturiser, depending on your needs - it may be easier to use a body butter that's almost solid and won't run everywhere, a pump dispenser, or a spray.
Before surgery:
1. Shape your eyebrows and wax/thread/pluck any stray hairs
2. Get your eyelashes tinted: this is cheap and readily available at salons, and will mean that you don't need to wear mascara for up to six weeks. I have no arguments for the pedants who say that you don't need to wear mascara anyway. I like to have dark lashes, and drawing attention to my lashes and big green/blue eyes is better than drawing attention to the dark circles around my eyes!
3. Invest in a cream blush, or even better, a cream product for cheeks and lips: I love the Benefit Benetint lip and cheek balm and Bobbi Brown's Pot Rouge in Powder Pink. Give me 30 seconds with either of these, and I'll magically transform into a healthy-looking creature before your very eyes.
4. Get a really good brightening concealer for under-eye bags and any other dark shadows that may emerge post-surgery: My intention is not really to promote lots of beauty products, but I use Clinique's Airbrush Concealer. I've used it for many years, and love it. It is also very easy to apply. Even with one hand. Even if that hand is your non-dominant hand.
5. Stock up on moisturiser and lip balm: Hospitals are dry places, and my skin is dry and flaky for days or even weeks afterwards, so I use a much heavier moisturiser than usual.
6. Choose some low-profile jewellery to wear while you're recovering: You'll probably have to remove all your jewellery for the surgery (you may be allowed to tape over a wedding band) but you'll need something simple to wear afterwards, if only to maintain piercings (don't forget about belly buttons, tongues, lips, etc. and make sure you have someone ready to put them back in for you after surgery if you can't do it yourself). I usually wear plain pearl or diamond stud earrings, a simple, light necklace, and my wedding and engagement rings, but no other jewellery. It's enough to keep me looking polished, and to keep the holes in my earlobes open, and that's all I need.
After surgery:
Get a manicure and pedicure: Don't make the mistake of doing this prior to surgery, as you'll just have to take it off, which is a bit of a nightmare if you have a gel or shellac manicure. Once you're safely out of the hospital, book yourself in for a mani-pedi, preferably with gel or shellac polish, which lasts for a couple of weeks without chipping or flaking. I like to get a bright colour on my feet and a neutral colour on my hands - it does have to go with everything for two weeks, after all! If you're not well enough to go out for your manicure, you may be able to find a mobile technician who will come to your home, or even to the hospital.
After all this preparation, I'm sure you're just about ready to just get to the hospital so that you can have a break, but three last things:
1. Order some pretty seasonal flowers to be delivered a couple of days after you get home from hospital (unless you're likely to be inundated with floral gifts from friends), or buy yourself an orchid in bud, so that it'll flower when you get home and are there to see it.
2. Put fresh sheets on your bed ready for when you get back. If you're anything like me, this thought will sustain you through the hard first night in the hospital after surgery. I tell myself that I just have to get through this night (and maybe a couple of others) and then I can go home and snuggle into my lovely soft bed with the clean, fresh sheets, and that means that Everything Will Be Alright.
So, if this isn't a medical guide, what is it?
This is a list of things that I do in the days or weeks before planned surgery to make my life easier in the days and weeks after the surgery. Of course, the nature of the surgery will change some things, but I'll try to be as general as possible.
Here in the UK, most people will know their surgery date at least a month in advance (for routine, non-urgent procedures). I like to use that time to think about the effects the surgery may have on my life while I'm recovering, and try to come up with as many solutions as possible before the problems have a chance to rear their ugly heads!
In my opinion, there is almost nothing worse than feeling weak and feeble, in pain, limited by wounds/dressings/plaster casts. Add to that the feeling of unwashed hair and skin, unwanted body hair, and flaking nails, and it's almost a recipe for disaster! Here are a few of the things that I do to prepare my body for surgery and to keep myself looking as normal as possible afterwards.
Hair:
Book a haircut as close to the date of your surgery as humanly possible - this will ensure that your hair looks as good as possible, even if you're not able to give it much attention. If you have very long, thick or curly hair, consider a change of style to one that needs minimal maintenance. This doesn't always mean short! My hair is wavy/curly and prone to frizz. Short styles, for me, mean endless conditioning and styling products and hours of blowdrying or using straightening irons or tongs. With a blunt cut just above shoulder length, I can get away with scrunching a little mousse through my hair and leaving it to dry naturally.If your hair is coloured, make sure you get your roots done, preferably just before surgery, so that it will look fresh for as long as possible while you recover and build up enough energy to get to the salon for the next colour!
Styling your hair may be another hurdle, especially if the surgery affects your hands/arms/shoulders, or is likely to leave you feeling very weak. I recommend investing in the following basic kit:
1. Dry shampoo: Having hair that looks bouncy and freshly-washed without getting out of bed is like a miracle! If possible, try a couple of brands and stock up on cans of your favourite in various sizes. You may still need help to apply it, massage it in and brush it out again, but it still takes considerably less effort for both you and your helper than a full shampoo and conditioner, plus it doesn't leave your hair wet, so no risk of getting chilled (or getting wet bedclothes)
2. Alice bands and 'crocodile' clips: These are enough to hold your hair back from your face, even if you have one hand out of action. Some people find the fabric bands easier than solid ones, but I'm a fan of the solid ones. The wider the better, in order to cover as much hair as possible! Having the crocodile clips as well means that you can try out a variety of styles with minimal effort or assistance
3. A wide-toothed comb is great for gentle hair-styling (or just detangling); if you can get one with a long handle, so much the better!
If your surgery means that blowdrying your hair is not an option, there are two things you can do. The first is to resign yourself to having a different style for a few weeks, working with your natural hair texture. As you'll be giving your hair a break from heated styling tools, it's a good opportunity to use intensive deep conditioners. Put a soft towel over your pillow and apply the conditioner. Massage your scalp well, and then comb the conditioner through to the ends of your hair. It can stay there until you next wash your hair. Not particularly glamourous or attractive, but your hair will be in better condition afterwards! The other option is to book a course of regular blow-dry treatments at your hairdressing salon. It's a lovely thing to do to pamper yourself, and may be the only way to get your hair washed and styled properly if you have an arm in a cast, but consider how you're going to get to and from the salon if you're not up to walking and not allowed to drive.
Skin:
After surgery, you may not feel like keeping up with your usual skincare regime. I like to cleanse, tone and moisturise, and have various favourite products to exfoliate and moisturise my skin. This all goes out of the window after any surgery, but especially if I have an arm in plaster. Simple cleansing wipes are my saving grace - they remove everything (even betadine, chlorhexidine and EEG glue - all of which you may encounter during your hospital stay!), and leave my skin feeling lovely. At a pinch, you could use them to wash your body, but I wouldn't recommend doing this more than once! My top five tips for skin have to be:1. If you wax, book a wax prior to your surgery: If you don't wax, think about whether you're going to keep up with whatever method you normally use, and whether it would bother you if you didn't keep up with it. Waxing lasts for 4-6 weeks for most people, and there's nothing quite like feeling smooth and polished when you're a bit weak.
2. Simple cleansing wipes
3. A pleasantly fragranced deodorant (I find spray easier than any other method of application)
4. A real sponge and a mild liquid soap: it's hard to rinse properly if you're washing in bed or in a chair, but it's not the end of the world if a mild soap stays on your skin - aqueous cream can be used instead of liquid soap - it doesn't feel particularly 'cleansing' but it does work, and it'll leave your skin lovely and soft
5. A luxurious moisturiser: it may be more difficult to apply, but having the luxury of my favourite scent as well as soft skin is worth the time it takes to apply it! There are lots of different types of moisturiser, depending on your needs - it may be easier to use a body butter that's almost solid and won't run everywhere, a pump dispenser, or a spray.
Cosmetic:
More than any other part of me, my face gives me away after surgery. It takes almost nothing to make me look pale and drawn, with dark circles around my eyes, and it is guaranteed to make me feel worse if I see myself in the mirror looking like that. Of course, there's always the option to just avoid the mirror, but let's assume that we generally like mirrors.Before surgery:
1. Shape your eyebrows and wax/thread/pluck any stray hairs
2. Get your eyelashes tinted: this is cheap and readily available at salons, and will mean that you don't need to wear mascara for up to six weeks. I have no arguments for the pedants who say that you don't need to wear mascara anyway. I like to have dark lashes, and drawing attention to my lashes and big green/blue eyes is better than drawing attention to the dark circles around my eyes!
3. Invest in a cream blush, or even better, a cream product for cheeks and lips: I love the Benefit Benetint lip and cheek balm and Bobbi Brown's Pot Rouge in Powder Pink. Give me 30 seconds with either of these, and I'll magically transform into a healthy-looking creature before your very eyes.
4. Get a really good brightening concealer for under-eye bags and any other dark shadows that may emerge post-surgery: My intention is not really to promote lots of beauty products, but I use Clinique's Airbrush Concealer. I've used it for many years, and love it. It is also very easy to apply. Even with one hand. Even if that hand is your non-dominant hand.
5. Stock up on moisturiser and lip balm: Hospitals are dry places, and my skin is dry and flaky for days or even weeks afterwards, so I use a much heavier moisturiser than usual.
6. Choose some low-profile jewellery to wear while you're recovering: You'll probably have to remove all your jewellery for the surgery (you may be allowed to tape over a wedding band) but you'll need something simple to wear afterwards, if only to maintain piercings (don't forget about belly buttons, tongues, lips, etc. and make sure you have someone ready to put them back in for you after surgery if you can't do it yourself). I usually wear plain pearl or diamond stud earrings, a simple, light necklace, and my wedding and engagement rings, but no other jewellery. It's enough to keep me looking polished, and to keep the holes in my earlobes open, and that's all I need.
After surgery:
Get a manicure and pedicure: Don't make the mistake of doing this prior to surgery, as you'll just have to take it off, which is a bit of a nightmare if you have a gel or shellac manicure. Once you're safely out of the hospital, book yourself in for a mani-pedi, preferably with gel or shellac polish, which lasts for a couple of weeks without chipping or flaking. I like to get a bright colour on my feet and a neutral colour on my hands - it does have to go with everything for two weeks, after all! If you're not well enough to go out for your manicure, you may be able to find a mobile technician who will come to your home, or even to the hospital.
After all this preparation, I'm sure you're just about ready to just get to the hospital so that you can have a break, but three last things:
1. Order some pretty seasonal flowers to be delivered a couple of days after you get home from hospital (unless you're likely to be inundated with floral gifts from friends), or buy yourself an orchid in bud, so that it'll flower when you get home and are there to see it.
2. Put fresh sheets on your bed ready for when you get back. If you're anything like me, this thought will sustain you through the hard first night in the hospital after surgery. I tell myself that I just have to get through this night (and maybe a couple of others) and then I can go home and snuggle into my lovely soft bed with the clean, fresh sheets, and that means that Everything Will Be Alright.
Monday, 29 October 2012
Being Prepared for Emergencies
I'm sure that all of you reading this will have seen the news reports about Hurricane Sandy, preparing to batter the east coast of the US.
Being in the UK, this doesn't affect me directly, but it does affect many of those that I love, and it reminds me that emergencies are different for those of us with chronic illnesses or disabilities.
Emergencies, when they're not actually happening to me, seem a long way off. Improbable, even. It's that age-old mentality of 'it won't happen to me'. But it might happen to me. Or to you. Really, it might, and there are a few things that you can do to make it less frightening.
If you've been reading my blog for a while, you may know that I have a Big Red Folder (blog post about that here), where I keep my important medical information. At the very least, make sure that you have an 'executive summary' for each member of your family:
Name (including what you prefer to be called - I'm much more likely to respond to Jo than to Joanna)
Address
Next of kin: Name and contact details - try to include someone who doesn't live with you as well, so that they can be contacted if your borough is flattened by aliens, for example.
Current medical issues: Include ALLERGIES and all diagnosed medical conditions, even if they are usually well-controlled. Emergencies have a nasty habit of causing things to flare up.
Medications: A list of all medications that you take - regularly and 'as required' or in emergencies (this could be a repeat prescription form from your GP)
Previous medical history: Significant illnesses, procedures, surgery, injuries
Family history: Keep this brief - just the relationship and names of significant conditions
If your medical conditions are atypical, complex or rare (or all three!), I would recommend getting a letter from the doctor who knows you best, giving information about your conditions and treatment, and including their contact details. Alternatively, you could print off some general information about your condition (try the website for the national association for your condition), and include copies of any helpful medical reports or discharge summaries that you have from your own doctors.
Put all this information safely into a folder, envelope or plastic wallet, including a soft copy on USB stick if you can.
There are lots of different types of emergency, and lots of different types of chronic illness, and I'm certainly not going to pretend to be prepared for every possible incident, but there are things that can be done with relatively little inconvenience.
Things to do before any emergency:
Things to pack:
Pick a strong bag that is large enough to hold what you need, but small and light enough to carry. Put your most important items into waterproof containers or ziploc bags, and into a lightweight cooler if necessary.
Thinking of all those in the path of Hurricane Sandy.
Being in the UK, this doesn't affect me directly, but it does affect many of those that I love, and it reminds me that emergencies are different for those of us with chronic illnesses or disabilities.
Emergencies, when they're not actually happening to me, seem a long way off. Improbable, even. It's that age-old mentality of 'it won't happen to me'. But it might happen to me. Or to you. Really, it might, and there are a few things that you can do to make it less frightening.
If you've been reading my blog for a while, you may know that I have a Big Red Folder (blog post about that here), where I keep my important medical information. At the very least, make sure that you have an 'executive summary' for each member of your family:
Name (including what you prefer to be called - I'm much more likely to respond to Jo than to Joanna)
Address
Next of kin: Name and contact details - try to include someone who doesn't live with you as well, so that they can be contacted if your borough is flattened by aliens, for example.
Current medical issues: Include ALLERGIES and all diagnosed medical conditions, even if they are usually well-controlled. Emergencies have a nasty habit of causing things to flare up.
Medications: A list of all medications that you take - regularly and 'as required' or in emergencies (this could be a repeat prescription form from your GP)
Previous medical history: Significant illnesses, procedures, surgery, injuries
Family history: Keep this brief - just the relationship and names of significant conditions
If your medical conditions are atypical, complex or rare (or all three!), I would recommend getting a letter from the doctor who knows you best, giving information about your conditions and treatment, and including their contact details. Alternatively, you could print off some general information about your condition (try the website for the national association for your condition), and include copies of any helpful medical reports or discharge summaries that you have from your own doctors.
Put all this information safely into a folder, envelope or plastic wallet, including a soft copy on USB stick if you can.
There are lots of different types of emergency, and lots of different types of chronic illness, and I'm certainly not going to pretend to be prepared for every possible incident, but there are things that can be done with relatively little inconvenience.
Things to do before any emergency:
- Register with your local gas, electricity and water suppliers if you have anyone in your family with medical requirements or limited mobility. They may be able to warn you of any planned outages, provide you with bottled water or power from a generator, or arrange other support in an emergency.
- If you're in the UK, I would recommend signing up for emergency 999 text messages (emergencysms.org.uk), especially if you have speech or hearing problems, or breathing problems that can make it hard to talk. On this topic (dealing with the ambulance service), you can ask your GP to request a 'flag' for your address, so that first responders have vital details (e.g. allergies to common emergency medications). I would also recommend getting yourself a MedicAlert bracelet, or similar.
- Keep ice packs in the freezer. Not only are they useful for treating some injuries, they will help to keep the things in your freezer cool in a power cut, or you can use them to keep medications cool. You can also buy 'instant' cool packs.
- If you rely on any electrical equipment (e.g. nebuliser, feeding pump, IV pump, motorised wheelchair), keep them charged if possible. Either have spare equipment (portable) or spare batteries for an emergency.
- Try to keep at least half a tank of petrol in the car at all times, along with a basic repair kit, jump leads, a small first aid kit, a torch, a spade, and an up-to-date map.
Things to pack:
Pick a strong bag that is large enough to hold what you need, but small and light enough to carry. Put your most important items into waterproof containers or ziploc bags, and into a lightweight cooler if necessary.
- Important medical information folder
- Basic first aid: Sticking plasters, triangular bandage, elasticated bandage(s), gauze, medicines to treat headaches, sore throats, allergic reactions, bites/stings; tweezers, scissors, sanitary products, nappies (if you have babies), sunscreen. If anyone in your family has sensory issues or migraines, include sunglasses or an eye mask, and ear plugs
- Medications: I try to pack enough medication to last me for 48 hours. A week would be better, but for me, that brings up a whole other set of problems with being able to carry this kit!
- Durable medical equipment: If you don't use the equipment regularly, make sure that you know where it's kept and that it's kept in good condition. Make sure everything is charged, and that you have spare batteries. A torch, emergency phone charger, and battery-powered radio should go in this kit too.
- Disposable medical equipment: Pack enough to keep you going through as many doses of medication as you are taking with you, plus a few spares. Include tubing, syringes, catheters, needles, medication 'pens', dressings. Take everything you would need in the event of pulling out a tube, falling into a (dirty) swimming pool, getting a blocked tube, or getting a hole in any tubing (including wheelchair punctures).
- Getting rid of waste: Small plastic bags, larger plastic bags (for waterproofing), ziploc bags (for keeping things clean and dry), a sharps bin (if you use sharps)
- Cleansing wipes, tissues, alcohol wipes, anti-bacterial surface wipes, alcohol hand gel, disposable gloves (and sterile gloves if necessary, e.g. if you have a central line)
- Monitoring: This includes blood sugar testing if you have diabetes, blood pressure, pulse, oxygen saturations, temperature, peak flow
- Nutrition: Tube feed, TPN, individually-wrapped snacks, boiled sweets, small containers of UHT milk, bottled water (plus baby formula for babies, and/or food for any pets you plan to take with you), drinking straws (for sharing bottles/cups) and cutlery (a spoon at the very least)
- ID, bank cards, cash, driving licence
- Change of clothes for everyone. This can be as minimal as clean underwear, socks and a hat (for warmth or sun protection), depending on what you can carry, and what weather conditions you expect. Include a toothbrush, toothpaste, deodorant.
Thinking of all those in the path of Hurricane Sandy.
Tuesday, 14 August 2012
Inspirational Poetry and the Ugly Side of Chronic Illness
I can't help but cringe when I see poetry designed to inspire and uplift. I often feel as though this belittles (in twee, and often tenuous, rhyming couplets) the strength that it takes to go through difficult situations.
Living with a chronic illness is not pretty. Things that are normally taboo can become a part of everyday life. Diarrhoea, constipation, incontinence, loss of libido, hirsutism (excessive body hair), mental health problems. I find myself concealing the ugly side of my illness from those around me - protecting them from the smells, the mess, the oozing, the unpleasant procedures, the intrusive, bitter, angry and desperate thoughts.
I don't want people to know about the ugly side of my illness. I don't want pity, and I don't want them to feel disgusted by me, or by my illness and its effects. So I present an airbrushed picture of myself to the world. I gloss over the parts of my life that might cause people to feel discomfort, censoring the scenes in which I scream with pain, those in which I sit hunched over a pile of cushions, sick bowl clutched in hand.
I don't want these things to become the focus of my life. I want to fix my thoughts on the things that make life worth living, despite the ugly bits.
But however much I may want to think only about sunshine, lollipops and rainbows, cake, shoes and lipstick, there is urine output to measure, pus to wipe, dislocated and deformed joints to reduce.
These unpleasant things tend not to make nice poetry.
So we write and quote nice poetry that talks about strength and overcoming adversity, and use words like 'battle' and 'trials' to convey, in a rather abstract way, the unmentionable things.
I'm sure this works to inspire some people, but I would really rather not think of my life as a constant battle. I don't believe that I'm being tried or tested. I'm not going to overcome anything. All I can do is live life as well as possible, enjoying the good bits and surviving the bad. There isn't going to be any glory at the end of it all; there are no medals in this game.
Of course, my cynicism about inspirational poetry may also come from the fact that I grew up with an amended version of 'Don't Quit':
When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile but have to cry.
When cares are pressing you down a bit
Don't complain to me - I don't give a sh*t
Living with a chronic illness is not pretty. Things that are normally taboo can become a part of everyday life. Diarrhoea, constipation, incontinence, loss of libido, hirsutism (excessive body hair), mental health problems. I find myself concealing the ugly side of my illness from those around me - protecting them from the smells, the mess, the oozing, the unpleasant procedures, the intrusive, bitter, angry and desperate thoughts.
I don't want people to know about the ugly side of my illness. I don't want pity, and I don't want them to feel disgusted by me, or by my illness and its effects. So I present an airbrushed picture of myself to the world. I gloss over the parts of my life that might cause people to feel discomfort, censoring the scenes in which I scream with pain, those in which I sit hunched over a pile of cushions, sick bowl clutched in hand.
I don't want these things to become the focus of my life. I want to fix my thoughts on the things that make life worth living, despite the ugly bits.
But however much I may want to think only about sunshine, lollipops and rainbows, cake, shoes and lipstick, there is urine output to measure, pus to wipe, dislocated and deformed joints to reduce.
These unpleasant things tend not to make nice poetry.
So we write and quote nice poetry that talks about strength and overcoming adversity, and use words like 'battle' and 'trials' to convey, in a rather abstract way, the unmentionable things.
I'm sure this works to inspire some people, but I would really rather not think of my life as a constant battle. I don't believe that I'm being tried or tested. I'm not going to overcome anything. All I can do is live life as well as possible, enjoying the good bits and surviving the bad. There isn't going to be any glory at the end of it all; there are no medals in this game.
Of course, my cynicism about inspirational poetry may also come from the fact that I grew up with an amended version of 'Don't Quit':
When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile but have to cry.
When cares are pressing you down a bit
Don't complain to me - I don't give a sh*t
Wednesday, 25 July 2012
Killing Season (Patient Survival Guide)
August is often jokily known as Killing Season.
Newly-qualified doctors almost all hit the wards on the first Wednesday of August. Most of the other grades of junior doctors also start new jobs at this time. While this makes the logistics of medical staffing simpler, it can be a scary time for patients, especially those with rare/complex conditions.
I'm absolutely not trying to knock junior doctors. They have all made it through medical school, through written finals and clinical finals. They are generally bright, interesting, personable and sensible. They work long hours in a demanding job, often with little support or appreciation.
Medical textbooks are often very thick - there are an awful lot of different conditions out there, and there is no way that even the best junior doctor can know everything about every condition. I'm surprised if my condition gets more than a fleeting mention (if that!) in most textbooks. I certainly don't expect very junior doctors to know about my condition, understand how it affects me day-to-day, or make long-term treatment plant. That's why I have specialists (lots and lots of them)!
Even if your new doctor has memorised the textbook from cover to cover, chances are that they've never actually met someone with your rare condition. They probably don't know many of their colleagues (or how to get favours to jump the queue for scans, other tests, or specialist review), may not be familiar with the computer system, prescribing system, or test-ordering system. They may not even know their way around the hospital.
Last year, during Killing Season, I met a newly-qualified doctor at my local hospital (a large London teaching hospital and major trauma centre). He had been called to see me because my peripheral IV line had blown (again). My veins are notoriously rubbish, but I really needed the access to be able get a medication that was only just keeping me out of Intensive Care. This doctor looked carefully for a vein, and couldn't find one. I told him that I was happy for him to have three attempts, but after that I would like him to ask someone else to try. He said to me, "There isn't even anywhere to try". Fair enough. He's not the only person to have said that. But what he did next scared me. He packed up his cannulating supplies, and walked off, telling me over his shoulder that he didn't think I needed IV access after all. Needless to say, I deteriorated, and ended up in Intensive Care.
It's entirely possible that I would have ended up in ICU anyway, but the experience frightened me.
So, a few tips for people like me on surviving the Killing Season:
1. Do everything possible to avoid an emergency admission at this time of year
Avoidance is the best possible technique - give the new doctors a chance to settle in and get confident. Even if these techniques only delay the inevitable, buying time in this situation is a Good Thing.
- Talk to your specialists in advance, and ensure that you have an emergency treatment plan
- Check your medications and make sure you have supplies of emergency medications (check the expiry date!)
- Make an appointment with your GP for the start of August. If you don't need it when the time comes, you can cancel it, but it will save you having to go to A&E if you have a flare-up and can't get an appointment to see your own doctor
2. Be prepared
- Make a list of all your medications, including generic name, dose, frequency, route, and the reason you take each medication
- Make a list of all your specialists and their contact details
- Write an executive summary of your medical history. This is a quick 'basic guide' to your conditions. Include your diagnoses (with a short explanation of how you're affected), any major hospitalisations, procedures or surgeries, and any relevant family or social history
- Get a printout of blood test results from when you're stable. If there are particular things that change when you're unwell, also get a printout from a time when you were unwell
3. Be kind to the new doctors
- Don't be sarcastic or aggressive if they ask questions that you think are silly - be grateful that they're asking questions, and use this as an opportunity to educate them about your condition
- Don't be upset or angry if the new doctor is patronising. They don't know your background, and will often aim for the lowest common denominator. Yes, it can be frustrating to have doctors talk about 'a little tube' or 'the tablet for your waterworks', but be patient - they'll learn as they get to know you
- If you want direct answers, ask direct questions - if you like to know specific blood results, ask
- This doctor could be your best advocate while you're inpatient - they're on the wards most of the time, are the ones that see all your blood results (and other test results), will write your discharge paperwork, and will perform most basic procedures (and request the more specialised ones). If they're on your side, you'll have a much easier time
- Don't expect the new doctor to spot it when things are deteriorating or improving. This is not a test, and there are no points for detecting 'hidden' symptoms and signs. If you notice something, tell your doctors. If you know how it's been treated in the past, or what it means, discuss this openly with the doctors
- Make a plan and agree it with the team (including your specialist) so that the most junior new doctors are not expected to make decisions about long-term care or discharge. Agree specifics, e.g. a peak flow of 75% before discharge and nebulisers not used more frequently than four-hourly, being on 'home medications' for 24 hours before being allowed home, or being able to walk a certain distance without severe pain
4. Don't panic
- If the new doctors are not picking up the hints that you are a well-informed patient with a complex condition and long medical history, and don't seem prepared to treat you as a member of the team, don't give up - talk to other members of the team, or other medical professionals (e.g. dieticians, nurse practitioners), and see if they can lead by example, by involving you in decisions and talking to you on a level
- If the new doctor is unwilling to prescribe strong painkillers or other potentially addictive medications, be understanding - not everyone takes these medications legitimately. Ask for a review by one of their seniors, or by the pain team (especially if they know you and your medical history)
- If all else fails, bite your tongue and grit your teeth when the new doctor is around. Not all doctors are cut-out for dealing with complex patients. Make only as much fuss as you need to be safe while you're in hospital, remembering that the problem doctor will probably move on to the next job in 3-4 months
Above all, be understanding. Your doctor may not have had a lunchbreak or toilet break; they might have been due to go home over an hour ago; they might have just been to an unsuccessful and upsetting crash call. They may be exhausted, overwhelmed, in a new city, far from friends and family, and under pressure from all sides.
Be prepared for things to take a little longer than usual, don't expect the newly-qualified doctor to make big decisions (like allowing you to go home, unless already agreed with the consultant), don't embarrass the new doctor in front of the consultant (no matter how tempting), and don't be rude or uncooperative. If you can educate the new doctor about your condition and treatment plan, they may turn out to be a valuable member of your team.
Good luck!
Newly-qualified doctors almost all hit the wards on the first Wednesday of August. Most of the other grades of junior doctors also start new jobs at this time. While this makes the logistics of medical staffing simpler, it can be a scary time for patients, especially those with rare/complex conditions.
I'm absolutely not trying to knock junior doctors. They have all made it through medical school, through written finals and clinical finals. They are generally bright, interesting, personable and sensible. They work long hours in a demanding job, often with little support or appreciation.
Medical textbooks are often very thick - there are an awful lot of different conditions out there, and there is no way that even the best junior doctor can know everything about every condition. I'm surprised if my condition gets more than a fleeting mention (if that!) in most textbooks. I certainly don't expect very junior doctors to know about my condition, understand how it affects me day-to-day, or make long-term treatment plant. That's why I have specialists (lots and lots of them)!
Even if your new doctor has memorised the textbook from cover to cover, chances are that they've never actually met someone with your rare condition. They probably don't know many of their colleagues (or how to get favours to jump the queue for scans, other tests, or specialist review), may not be familiar with the computer system, prescribing system, or test-ordering system. They may not even know their way around the hospital.
Last year, during Killing Season, I met a newly-qualified doctor at my local hospital (a large London teaching hospital and major trauma centre). He had been called to see me because my peripheral IV line had blown (again). My veins are notoriously rubbish, but I really needed the access to be able get a medication that was only just keeping me out of Intensive Care. This doctor looked carefully for a vein, and couldn't find one. I told him that I was happy for him to have three attempts, but after that I would like him to ask someone else to try. He said to me, "There isn't even anywhere to try". Fair enough. He's not the only person to have said that. But what he did next scared me. He packed up his cannulating supplies, and walked off, telling me over his shoulder that he didn't think I needed IV access after all. Needless to say, I deteriorated, and ended up in Intensive Care.
It's entirely possible that I would have ended up in ICU anyway, but the experience frightened me.
So, a few tips for people like me on surviving the Killing Season:
1. Do everything possible to avoid an emergency admission at this time of year
Avoidance is the best possible technique - give the new doctors a chance to settle in and get confident. Even if these techniques only delay the inevitable, buying time in this situation is a Good Thing.
- Talk to your specialists in advance, and ensure that you have an emergency treatment plan
- Check your medications and make sure you have supplies of emergency medications (check the expiry date!)
- Make an appointment with your GP for the start of August. If you don't need it when the time comes, you can cancel it, but it will save you having to go to A&E if you have a flare-up and can't get an appointment to see your own doctor
2. Be prepared
- Make a list of all your medications, including generic name, dose, frequency, route, and the reason you take each medication
- Make a list of all your specialists and their contact details
- Write an executive summary of your medical history. This is a quick 'basic guide' to your conditions. Include your diagnoses (with a short explanation of how you're affected), any major hospitalisations, procedures or surgeries, and any relevant family or social history
- Get a printout of blood test results from when you're stable. If there are particular things that change when you're unwell, also get a printout from a time when you were unwell
3. Be kind to the new doctors
- Don't be sarcastic or aggressive if they ask questions that you think are silly - be grateful that they're asking questions, and use this as an opportunity to educate them about your condition
- Don't be upset or angry if the new doctor is patronising. They don't know your background, and will often aim for the lowest common denominator. Yes, it can be frustrating to have doctors talk about 'a little tube' or 'the tablet for your waterworks', but be patient - they'll learn as they get to know you
- If you want direct answers, ask direct questions - if you like to know specific blood results, ask
- This doctor could be your best advocate while you're inpatient - they're on the wards most of the time, are the ones that see all your blood results (and other test results), will write your discharge paperwork, and will perform most basic procedures (and request the more specialised ones). If they're on your side, you'll have a much easier time
- Don't expect the new doctor to spot it when things are deteriorating or improving. This is not a test, and there are no points for detecting 'hidden' symptoms and signs. If you notice something, tell your doctors. If you know how it's been treated in the past, or what it means, discuss this openly with the doctors
- Make a plan and agree it with the team (including your specialist) so that the most junior new doctors are not expected to make decisions about long-term care or discharge. Agree specifics, e.g. a peak flow of 75% before discharge and nebulisers not used more frequently than four-hourly, being on 'home medications' for 24 hours before being allowed home, or being able to walk a certain distance without severe pain
4. Don't panic
- If the new doctors are not picking up the hints that you are a well-informed patient with a complex condition and long medical history, and don't seem prepared to treat you as a member of the team, don't give up - talk to other members of the team, or other medical professionals (e.g. dieticians, nurse practitioners), and see if they can lead by example, by involving you in decisions and talking to you on a level
- If the new doctor is unwilling to prescribe strong painkillers or other potentially addictive medications, be understanding - not everyone takes these medications legitimately. Ask for a review by one of their seniors, or by the pain team (especially if they know you and your medical history)
- If all else fails, bite your tongue and grit your teeth when the new doctor is around. Not all doctors are cut-out for dealing with complex patients. Make only as much fuss as you need to be safe while you're in hospital, remembering that the problem doctor will probably move on to the next job in 3-4 months
Above all, be understanding. Your doctor may not have had a lunchbreak or toilet break; they might have been due to go home over an hour ago; they might have just been to an unsuccessful and upsetting crash call. They may be exhausted, overwhelmed, in a new city, far from friends and family, and under pressure from all sides.
Be prepared for things to take a little longer than usual, don't expect the newly-qualified doctor to make big decisions (like allowing you to go home, unless already agreed with the consultant), don't embarrass the new doctor in front of the consultant (no matter how tempting), and don't be rude or uncooperative. If you can educate the new doctor about your condition and treatment plan, they may turn out to be a valuable member of your team.
Good luck!
Sunday, 22 July 2012
Hospitals are for the Healthy
As I write this, I am an inpatient on an Acute Medical Admissions Ward. This is a ward designed to take people straight from the Accident & Emergency department and care for them until they are well enough to go home, or until they move on to another, more specialised, ward. There are several teams of doctors that care for the patients on this ward, all led by Consultants who specialise in Acute Medicine.
I can't help feeling that this set-up isn't a very good 'fit' for me.
Depending on how specific you want to be, I have at least six conditions listed in the 'diagnosis' section of my patient record, none of which are 'acute'. Sometimes I have an acute flare-up of, say, asthma, for which I could legitimately be admitted to this ward. However, the acute flare will always be on a background of chronic 'difficult' asthma, which is a poorly understood condition, even among respiratory specialists.
Unfortunately, admitting me for an acute flare-up of asthma is not as simple as admitting someone who is otherwise well. My other conditions still have to be treated and monitored, and sometimes the treatment for the asthma must be modified because of my other conditions and vice versa. This is not always as straightforward as it sounds, and often requires input from multiple specialists.
Usually I am transferred quickly from this admissions ward to a more specialist (respiratory or gastro) ward, where I am much more at ease, but for some reason that hasn't happened this time. Which may be because I have an infection, and that was seen (in isolation from my other complex conditions) as a simple, acute problem.
Which it isn't.
Anyway, I digress. My point was really just that so much of medicine is geared towards admitting people with acute conditions, restoring them quickly to their previously healthy state, and allowing them to go home. Those who don't fit this simplistic mould must be elderly, and therefore can be transferred to the Elderly Care service.
The paediatricians are used to seeing children with complex medical needs, and paediatric units are often shining beacons of multidisciplinary care, but somehow this fizzles out as the patients get older. I know that there are other young-ish adults out there with chronic/rare/complex conditions. I read their blogs and follow them on Twitter, but I don't see them in hospitals, and I don't see a system that is designed to care for them.
I see a system designed for people who can walk down long corridors for miles and miles, don't require a special or complex diet (vegetarian is probably manageable, but low-FODMAPs or a ketogenic diet - you must be joking!), don't need snacks outside set mealtimes, need minimal help to dress, feed themselves or transfer, can wash independently (in a shower cubicle without a seat), don't have severe allergies to air-fresheners/cleaning products, can hear their name called from behind a screen in a busy clinic, can remember the names and dosages of their medications... I'm sure you can think of so many more examples.
Hospitals are designed for healthy people, and I say we need a rethink.
I can't help feeling that this set-up isn't a very good 'fit' for me.
Depending on how specific you want to be, I have at least six conditions listed in the 'diagnosis' section of my patient record, none of which are 'acute'. Sometimes I have an acute flare-up of, say, asthma, for which I could legitimately be admitted to this ward. However, the acute flare will always be on a background of chronic 'difficult' asthma, which is a poorly understood condition, even among respiratory specialists.
Unfortunately, admitting me for an acute flare-up of asthma is not as simple as admitting someone who is otherwise well. My other conditions still have to be treated and monitored, and sometimes the treatment for the asthma must be modified because of my other conditions and vice versa. This is not always as straightforward as it sounds, and often requires input from multiple specialists.
Usually I am transferred quickly from this admissions ward to a more specialist (respiratory or gastro) ward, where I am much more at ease, but for some reason that hasn't happened this time. Which may be because I have an infection, and that was seen (in isolation from my other complex conditions) as a simple, acute problem.
Which it isn't.
Anyway, I digress. My point was really just that so much of medicine is geared towards admitting people with acute conditions, restoring them quickly to their previously healthy state, and allowing them to go home. Those who don't fit this simplistic mould must be elderly, and therefore can be transferred to the Elderly Care service.
The paediatricians are used to seeing children with complex medical needs, and paediatric units are often shining beacons of multidisciplinary care, but somehow this fizzles out as the patients get older. I know that there are other young-ish adults out there with chronic/rare/complex conditions. I read their blogs and follow them on Twitter, but I don't see them in hospitals, and I don't see a system that is designed to care for them.
I see a system designed for people who can walk down long corridors for miles and miles, don't require a special or complex diet (vegetarian is probably manageable, but low-FODMAPs or a ketogenic diet - you must be joking!), don't need snacks outside set mealtimes, need minimal help to dress, feed themselves or transfer, can wash independently (in a shower cubicle without a seat), don't have severe allergies to air-fresheners/cleaning products, can hear their name called from behind a screen in a busy clinic, can remember the names and dosages of their medications... I'm sure you can think of so many more examples.
Hospitals are designed for healthy people, and I say we need a rethink.
Friday, 22 June 2012
The Pain Olympics
I've written about this before, so forgive me if you're bored of reading about it, but it's been on my mind. And hey, it's topical (35 days to go until the real olympics). Apologies if you're heartily sick of the olympics. Obviously, this isn't really about sport, so read on.
What I mean by the 'pain olympics' is the competitiveness that I've occasionally witnessed from other people with chronic illnesses or disabilities, as though there's a gold medal for the 'most disabled'. The conversation might go something like this:
Person 1: I am paraplegic (paralysed from the waist down). This is the worst thing that has ever happened to me.
Person 2: I am tetraplegic (paralysed from the shoulders down). You're hardly paralysed. Call that an injury? It's just a slap on the arse. Get yourself a band-aid and a cup of tea and you'll be fine.
With some paraphrasing, this is a conversation that I have heard many times in real life.
I have to admit that it's tempting to squash the complainers. The people who have a cold and whine for a week. A broken toe? A cut that needed *gasp* two stitches? There are times when I want to tell them to look around and try to gain some perspective; to tell them that they have no idea what 'serious' pain is like.
But I don't.
Why?
Because where do you draw the line?
What counts as serious and 'worthy' of sympathy? There will always be someone in a worse position - more paralysed, in more pain, more limited by their disability, in hospital for longer, requiring more care or more surgical intervention. There will always be someone younger, more courageous, more inspirational; achieving more against the odds.
Complainers, we love you and want to be supportive, but think carefully about what you're saying, and who's on the receiving end of your whining. Telling someone with digestive tract paralysis who is totally unable to eat about the awful morning sickness that is putting you off your organic muesli may not earn you much sympathy.
Sick people, try not to be too judgemental. Imagine how much we could achieve if we supported each other instead of thinking up new and original cutting remarks to put people in their place if they dare to complain about something as minor as, say, childbirth.
For me, the progression of this illness is the worst thing (or one of the worst things) I've ever experienced. I know that there are people in a worse position than me, and I can't imagine how strong they must have to be to get through each day. I rely on these people to inspire me to find the inner strength that I need to seek out the joy in life when it seems impossibly hard. I am so grateful that they don't belittle my experience, though it's nothing in comparison to what some of them are living through on a daily basis.
There is no gold medal for having the most serious illness. The only achievements in life are those we earn, despite our circumstances, not because of them.
What I mean by the 'pain olympics' is the competitiveness that I've occasionally witnessed from other people with chronic illnesses or disabilities, as though there's a gold medal for the 'most disabled'. The conversation might go something like this:
Person 1: I am paraplegic (paralysed from the waist down). This is the worst thing that has ever happened to me.
Person 2: I am tetraplegic (paralysed from the shoulders down). You're hardly paralysed. Call that an injury? It's just a slap on the arse. Get yourself a band-aid and a cup of tea and you'll be fine.
With some paraphrasing, this is a conversation that I have heard many times in real life.
I have to admit that it's tempting to squash the complainers. The people who have a cold and whine for a week. A broken toe? A cut that needed *gasp* two stitches? There are times when I want to tell them to look around and try to gain some perspective; to tell them that they have no idea what 'serious' pain is like.
But I don't.
Why?
Because where do you draw the line?
What counts as serious and 'worthy' of sympathy? There will always be someone in a worse position - more paralysed, in more pain, more limited by their disability, in hospital for longer, requiring more care or more surgical intervention. There will always be someone younger, more courageous, more inspirational; achieving more against the odds.
Complainers, we love you and want to be supportive, but think carefully about what you're saying, and who's on the receiving end of your whining. Telling someone with digestive tract paralysis who is totally unable to eat about the awful morning sickness that is putting you off your organic muesli may not earn you much sympathy.
Sick people, try not to be too judgemental. Imagine how much we could achieve if we supported each other instead of thinking up new and original cutting remarks to put people in their place if they dare to complain about something as minor as, say, childbirth.
For me, the progression of this illness is the worst thing (or one of the worst things) I've ever experienced. I know that there are people in a worse position than me, and I can't imagine how strong they must have to be to get through each day. I rely on these people to inspire me to find the inner strength that I need to seek out the joy in life when it seems impossibly hard. I am so grateful that they don't belittle my experience, though it's nothing in comparison to what some of them are living through on a daily basis.
There is no gold medal for having the most serious illness. The only achievements in life are those we earn, despite our circumstances, not because of them.
Thursday, 14 June 2012
Life-Limiting Illness
One of the things that has really hit home over the last few months, as I've spent so much time in hospital, is that my illness is progressing. I have known for a long time that I probably wouldn't live to be 100 to receive a telegram from the Queen (or perhaps King, by then!), but with each new problem, it seems increasingly likely that I may be lucky to make it to 50.
I've lived with severe 'brittle' asthma for almost all my life. I also have severe allergies. Either of those could kill me. While thatt makes it a bit scary when I have an asthma attack or anaphylactic reaction, most of the time I can forget about those and put the thoughts of death to the back of my mind.
More recently, as my GI tract has shut down, my autonomic dysfunction has become more pronounced and my blood sugars have become more difficult to control, I have needed more day-to-day medical support.just to remain stable. I have a jejunostomy tube for medications and low-volume feeding, and a Hickman line (permanent IV line) for medications and IV fluids. My team are gearing up to start me on parenteral (IV) nutrition, which carries with it many risks. Risks of bloodstream infection (septicaemia), liver damage and blood clots, to name just a few. I know that these risks are small in comparison to the guaranteed complications of starvation and malnutrition, but they are still significant.
I can accept the restrictions that my illness has placed on my life. I am still so grateful to be alive, and to have the opportunity to experience this wonderful world. But I don't feel ready to die. Not now, and not in five or ten years. Probably not even in 20 years. There are still so many things that I want to experience. I want to grow old with my husband. I want to see our friends' children grow up, and to have nieces, nephews and godchildren, and to be there for them. I don't want to miss the conversations, the celebrations; even the bad times. I want to be there to comfort my husband, friends and family; to grieve with them in the sad times and rejoice with them in the good.
I am not afraid of death. I just don't feel ready to stop living.
My husband and I are very open with each other about this. We both know that I have a life-limiting illness, and we live accordingly. We seize our opportunities when they arise - who knows what might be impossible for me by next year or the year after? We talk about funeral plans and end-of-life decisions for both of us. We discuss the things that are important to us about medical care, our thoughts on remarriage, what we want to happen to our bodies after death, and how we want to be remembered.
During one of these conversations, I asked my husband how he copes with the thought that I will die before I'm old. His response?
"I will love you for as long as I have you. And then a bit longer."
I've lived with severe 'brittle' asthma for almost all my life. I also have severe allergies. Either of those could kill me. While thatt makes it a bit scary when I have an asthma attack or anaphylactic reaction, most of the time I can forget about those and put the thoughts of death to the back of my mind.
More recently, as my GI tract has shut down, my autonomic dysfunction has become more pronounced and my blood sugars have become more difficult to control, I have needed more day-to-day medical support.just to remain stable. I have a jejunostomy tube for medications and low-volume feeding, and a Hickman line (permanent IV line) for medications and IV fluids. My team are gearing up to start me on parenteral (IV) nutrition, which carries with it many risks. Risks of bloodstream infection (septicaemia), liver damage and blood clots, to name just a few. I know that these risks are small in comparison to the guaranteed complications of starvation and malnutrition, but they are still significant.
I can accept the restrictions that my illness has placed on my life. I am still so grateful to be alive, and to have the opportunity to experience this wonderful world. But I don't feel ready to die. Not now, and not in five or ten years. Probably not even in 20 years. There are still so many things that I want to experience. I want to grow old with my husband. I want to see our friends' children grow up, and to have nieces, nephews and godchildren, and to be there for them. I don't want to miss the conversations, the celebrations; even the bad times. I want to be there to comfort my husband, friends and family; to grieve with them in the sad times and rejoice with them in the good.
I am not afraid of death. I just don't feel ready to stop living.
My husband and I are very open with each other about this. We both know that I have a life-limiting illness, and we live accordingly. We seize our opportunities when they arise - who knows what might be impossible for me by next year or the year after? We talk about funeral plans and end-of-life decisions for both of us. We discuss the things that are important to us about medical care, our thoughts on remarriage, what we want to happen to our bodies after death, and how we want to be remembered.
During one of these conversations, I asked my husband how he copes with the thought that I will die before I'm old. His response?
"I will love you for as long as I have you. And then a bit longer."
Sunday, 3 June 2012
Milestones
In some paediatric cancer units, the children are allowed to choose a bead for every medical intervention - each blood draw, chemotherapy dose, x-ray, etc. is recorded onto a long string of beads: their entire cancer journey mapped out in bright colours.
I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!
I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.
This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.
I think now is the time to add the next bead to my bracelet.
These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.
For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!
This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.
My lifelines - my hope for the future.
I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!
I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.
This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.
I think now is the time to add the next bead to my bracelet.
These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.
For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!
This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.
My lifelines - my hope for the future.
Sunday, 27 May 2012
Visible Reminders of Illness
Every so often the question arises about whether it's 'better' to have a visible illness or an invisible one.
Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.
I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.
Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.
It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.
Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.
But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.
Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.
I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.
Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.
It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.
Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.
But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.
Tuesday, 22 May 2012
Is it ok to be scared?
Of course it's ok to be scared.
Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.
The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.
I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.
One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.
Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.
Fear is one of those things that can seriously get in the way of living a productive life despite illness.
For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.
I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!
Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!
Am I still scared?
Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.
Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.
The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.
I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.
One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.
Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.
Fear is one of those things that can seriously get in the way of living a productive life despite illness.
For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.
I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!
Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!
Am I still scared?
Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.
Sunday, 20 May 2012
Courage
A favourite quote of mine states that, "Courage doesn't always roar; sometimes courage is the small voice at the end of the day saying 'I will try again tomorrow'." (Mary Ann Radmacher).
This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.
My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.
Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.
Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?
Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.
This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.
My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.
Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.
Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?
Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.
Tuesday, 27 March 2012
Being kind to myself
I have been feeling sad since I got home from hospital at the end of last week.
Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved.
Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.
My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years.
Deep down, I know that this isn't a helpful attitude, but how to change things for the better?
First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?
Where do I start?
1. Take a long, hot bath
2. Paint my nails
3. Smother myself in my favourite body lotion
4. Put on my prettiest pyjamas
5. Play some feelgood music
That done, I'm ready to adjust my attitude.
I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all.
I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.
It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.
So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.
My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it.
Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone?
1. Spend time with friends
2. Wear lipstick
3. Ask for help
Simples!
Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved.
Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.
My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years.
Deep down, I know that this isn't a helpful attitude, but how to change things for the better?
First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?
Where do I start?
1. Take a long, hot bath
2. Paint my nails
3. Smother myself in my favourite body lotion
4. Put on my prettiest pyjamas
5. Play some feelgood music
That done, I'm ready to adjust my attitude.
I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all.
I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.
It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.
So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.
My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it.
Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone?
1. Spend time with friends
2. Wear lipstick
3. Ask for help
Simples!
Saturday, 24 March 2012
Health Update (and soup recipe)
I am currently in the middle of a big flare-up of gastroparesis, which started about two months ago. Prior to this flare, I could eat small amounts of most things, and though I often felt nauseous, bloated and uncomfortable, these symptoms were controllable with medication and other techniques. Currently, I'm not able to eat anything solid, and have just spent a week in hospital, where I had some injections of Botox into the lower opening (pylorus) of my stomach. Normally the pylorus holds the stomach closed until the food has been churned and mixed enough for it to be allowed to continue on its journey through the digestive system. The Botox relaxes this muscle, meaning that the food doesn't get stuck in my stomach, but can just drain through by gravity.
I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.
I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me. It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.
I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.
So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens.
While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.
The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.
People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!
The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!
Ingredients:
3-4 thick slices of slightly stale white bread, crusts removed
2 cloves of garlic
Generous drizzle of olive oil
1 1/2 tbsp red wine vinegar
675 g tomatoes
2 sweet red peppers (from a jar, or roasted and skinned)
1 large mild onion
1 small cucumber
425 ml tomato juice
Salt and black pepper
A few fresh chives
Method:
Tear the bread into small pieces and put them into a large bowl.
Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.
Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.
Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.
Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish.
I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.
I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me. It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.
I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.
So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens.
While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.
The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.
People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!
The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!
Ingredients:
3-4 thick slices of slightly stale white bread, crusts removed
2 cloves of garlic
Generous drizzle of olive oil
1 1/2 tbsp red wine vinegar
675 g tomatoes
2 sweet red peppers (from a jar, or roasted and skinned)
1 large mild onion
1 small cucumber
425 ml tomato juice
Salt and black pepper
A few fresh chives
Method:
Tear the bread into small pieces and put them into a large bowl.
Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.
Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.
Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.
Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish.
Friday, 9 March 2012
Acute and Chronic
After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.
Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.
With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.
Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.
Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.
My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.
I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?
I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?
My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.
I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.
I picture myself on arrival at the hospital:
Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?
That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.
I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.
Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?
Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.
Taxi!
Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.
With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.
Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.
Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.
My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.
I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?
I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?
My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.
I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.
I picture myself on arrival at the hospital:
Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?
That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.
I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.
Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?
Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.
Taxi!
Action Plans
Simple definitions:
Acute illness:
- Rapid onset
- Severe symptoms
- Short course
- Of long duration
- (often developing slowly or insidiously)
- Variable severity
However, in real life, things are often not so simple. Let's take asthma as an example:
I have been diagnosed with asthma since 1988. That is a long time. I would feel comfortable saying that I have chronic asthma. I take lots of different medications to treat my asthma, including daily high-dose oral steroids (Prednisolone). I nebulise medications every day and get daily symptoms of asthma. Again, this is easy. I have severe chronic asthma.
So what about when I have a flare-up of asthma. Sometimes this comes on subtly, making each breath shorter and more difficult over a period of hours or days; sometimes it happens in minutes. This is clearly an acute reaction (especially the rapid reaction, which is often a response to some allergen or other). The acute reaction is easy: I am having an acute flare on a background of chronic asthma. It's less easy to spot the acute exacerbation when it happens less quickly, and it can be very difficult to know where to draw the line between these situations:
- I can manage this situation at home by increasing my normal medications
- I need to speak to my GP or asthma nurse about extra treatment to keep me at home (e.g. extra steroids or antibiotics)
- I need treatment in hospital
The best solution to this is to get together with your GP (or consultant, or specialist nurse) and agree a plan. For asthma, you might use peak flow measurement as a guide; for diabetes it might be blood sugar measurements; for gastroparesis, it might be body weight in combination with certain symptoms.
My asthma plan:
- Peak flow more than 80% of normal: Carry on as normal
- Peak flow between 50% and 80%: Increase oral and inhaled steroids, use nebuliser as often as four-hourly if necessary; contact GP
- Peak flow less than 50%: Go to hospital. Go straight to hospital. Do not pass Go. Do not collect £200.
Having these signs and symptoms written down in black and white means that the pressure of making a decision is lighter. Without such a plan, I would tend to continue to try all the drugs available to me at home, and wait, and wait, and wait.
I don't want to make a fuss. I don't want them to think that I'm overreacting. I have stuff to do. I don't want to be admitted to the hospital. I'll just try one more nebuliser...
And wait...
Until it's nearly too late, and I end up in the Intensive Care Unit on a ventilator.
Because I didn't want to make a fuss.
I have a chronic illness, which means that I live with daily, constant symptoms, and it can be very easy to become blase about them, even when they become quite severe, as in the case of an acute asthma attack. Having cut-off points agreed in advance with your specialists (GP, consultant, specialist nurses), written down and reviewed regularly, mean that you don't have to make a decision. I'm not making a fuss, I'm just following my action plan.
Action plans save lives.
Wednesday, 29 February 2012
Celebrating Getting Older
It's a week until my birthday, and I've been thinking a lot about getting older.
I can't say that I'm looking forward to the day itself. I'm currently stuck in a bit of a gastroparesis flare, so there will be no cake, no Champagne, and certainly no 7-course dinner at Le Gavroche for me! None of my clothes fit me, I have even less energy than usual, and forcing myself to take in at least some nutrients is causing pain, nausea and vomiting.
Despite that, I like birthdays, even this one. Every year I feel pride at surviving another year. Yes, every year I survive things that I might not have survived. More than that, I celebrate having survived the pain, nausea, boredom, frustration, breathlessness. I have survived everything that my failing body has thrown at me and everything the medical world has thrown at my failing body.
I'm so grateful to have the opportunity to have lived long enough to get into my 30s; so grateful to have had the opportunity to marry my very best friend, who loves me more than I've ever been loved before; to have travelled the world, met amazing people, and spent time with those who mean the most to me.
I look forward to celebrating this next birthday, regardless of whether I'm healthy enough to celebrate in the way that I would like. It's enough for me to be here - everything else is a bonus!
I can't say that I'm looking forward to the day itself. I'm currently stuck in a bit of a gastroparesis flare, so there will be no cake, no Champagne, and certainly no 7-course dinner at Le Gavroche for me! None of my clothes fit me, I have even less energy than usual, and forcing myself to take in at least some nutrients is causing pain, nausea and vomiting.
Despite that, I like birthdays, even this one. Every year I feel pride at surviving another year. Yes, every year I survive things that I might not have survived. More than that, I celebrate having survived the pain, nausea, boredom, frustration, breathlessness. I have survived everything that my failing body has thrown at me and everything the medical world has thrown at my failing body.
I'm so grateful to have the opportunity to have lived long enough to get into my 30s; so grateful to have had the opportunity to marry my very best friend, who loves me more than I've ever been loved before; to have travelled the world, met amazing people, and spent time with those who mean the most to me.
I look forward to celebrating this next birthday, regardless of whether I'm healthy enough to celebrate in the way that I would like. It's enough for me to be here - everything else is a bonus!
Monday, 27 February 2012
Rebellion
Chronic illness doesn't allow much room for rebellion. It takes people from all backgrounds and walks of life and forms them into a homogeneous group - patients.
The life of a patient with chronic illness is filled with constant reminders of illness: not just symptoms, but regular (and as required) medications, special diets and regular monitoring, both at home and in hospitals/clinics. There's not much wiggle room in this sort of lifestyle.
I have medications that are taken every 4, every 6, every 8, every 12 and every 72 hours. 21 different ones, in fact. Some of them have to be taken with food; others on an empty stomach. Some medications are fine when taken in combination with other medications; some have to be taken at least a couple of hours apart.
These medications, in addition to their desired effects on my tumbledown body, have so many side effects. I'm sure I'm not alone in having medications to treat the effects of other medications. Less serious considerations include drowsiness (Promethazine works beautifully for me, but knocks me out completely for approximately 12-15 hours), nausea, abdominal pain, dizziness and tachycardia. It's not always possible, but as far as I can, I try to take these medications when I don't need to drive, be alert (and/or awake), or alone. Just for fun, our stairs are entirely open on one side, so tackling the stairs is not something to be done when drowsy or dizzy!
I am supposed to monitor my weight, calorie and fluid intake, blood sugar, peak flow (a measure of how restricted my airways are), oxygen saturations, blood pressure, pulse and temperature every day. I also have a special (and very restrictive) diet that I have to follow.
I have braces for my shoulders (including slings), wrists, elbows, knees, ankles and feet. I have a selection of crutches, sticks and wheelchairs.
This is my reality. Every single day.
There are days when this feels far, far too much, and I get an overwhelming desire to escape from all of it - from the symptoms and from all the medications, the testing, and the medicalness of it all.
I owe my life to many of the medications that I take, and know that not taking these would win me at least a week or so in hospital. I don't want to take medications, but my desire to stay out of hospital is even greater. So I divide my medications into two categories: essential and optional. The latter category is mainly made up of painkillers and supplements. Missing a dose or two of these is bad, but not bad enough to land me up in hospital. So, when I'm feeling rebellious and as though I can't stand to take any more medication, I don't take these meds.
Yes, this causes pain, but I can convince myself that it's worth it just for that moment of freedom from medications. This is what normality feels like, right?
The life of a patient with chronic illness is filled with constant reminders of illness: not just symptoms, but regular (and as required) medications, special diets and regular monitoring, both at home and in hospitals/clinics. There's not much wiggle room in this sort of lifestyle.
I have medications that are taken every 4, every 6, every 8, every 12 and every 72 hours. 21 different ones, in fact. Some of them have to be taken with food; others on an empty stomach. Some medications are fine when taken in combination with other medications; some have to be taken at least a couple of hours apart.
These medications, in addition to their desired effects on my tumbledown body, have so many side effects. I'm sure I'm not alone in having medications to treat the effects of other medications. Less serious considerations include drowsiness (Promethazine works beautifully for me, but knocks me out completely for approximately 12-15 hours), nausea, abdominal pain, dizziness and tachycardia. It's not always possible, but as far as I can, I try to take these medications when I don't need to drive, be alert (and/or awake), or alone. Just for fun, our stairs are entirely open on one side, so tackling the stairs is not something to be done when drowsy or dizzy!
I am supposed to monitor my weight, calorie and fluid intake, blood sugar, peak flow (a measure of how restricted my airways are), oxygen saturations, blood pressure, pulse and temperature every day. I also have a special (and very restrictive) diet that I have to follow.
I have braces for my shoulders (including slings), wrists, elbows, knees, ankles and feet. I have a selection of crutches, sticks and wheelchairs.
This is my reality. Every single day.
There are days when this feels far, far too much, and I get an overwhelming desire to escape from all of it - from the symptoms and from all the medications, the testing, and the medicalness of it all.
I owe my life to many of the medications that I take, and know that not taking these would win me at least a week or so in hospital. I don't want to take medications, but my desire to stay out of hospital is even greater. So I divide my medications into two categories: essential and optional. The latter category is mainly made up of painkillers and supplements. Missing a dose or two of these is bad, but not bad enough to land me up in hospital. So, when I'm feeling rebellious and as though I can't stand to take any more medication, I don't take these meds.
Yes, this causes pain, but I can convince myself that it's worth it just for that moment of freedom from medications. This is what normality feels like, right?
Sunday, 26 February 2012
Setting Realistic Goals
Before you start, if you haven't read Flo's response to my post on Pacing (over at disabledmedic.blogspot.com) do it now - it's great!
Now, back to the point...
One of the things that I've been learning recently is how to set goals for myself.
This is how it used to go:
Jo: I don't do enough exercise. I'm going to go and spend an hour working out at the gym.
Jo goes to the gym, gets dizzy after 5 minutes, goes home and spends the rest of the day in pain and dizzy, trying to sleep.
This, clearly, was not a good way to go about achieving my goal.
It's very easy, when living with a chronic illness, to get discouraged because there are so many things that we can't do. I find myself obsessing about each deterioration and each perceived failure, while overlooking achievements as being too minor to 'count' for anything.
With this in mind, it's even more important to set good goals - realistic goals that lead to success. We might not succeed every time, but the more we do, the more positive we feel about our ability to achieve things.
I use the SMART system when I set goals for myself. This is an acronym that stands for:
- Specific
- Measurable
- Achievable
- Realistic
- Timely
It's important that goals should be specific and measurable - how else can you know if you've succeeded? It's not enough to say "I want to lose weight" - you need to set a measurable figure on your weight loss. This has to be a realistic number. If you're on high-dose steroids, for example, which have weight gain and increased appetite as a common side-effect, you may need to allow yourself more time to achieve your goal, or to set a smaller initial target.
Give yourself a time limit so that you know when to stop and check how much progress you've made. You may need to have more than one target - a long-term target and a short-term target. Aiming to lose 2 lb (1 kg) in a month sounds more manageable than aiming to lose 22 lb (10 kg).
Once I've set my goal, I think about the changes that I need to make in order to achieve my goal. Sticking with the example of losing weight, I might decide to drink water instead of fruit juice, and to eat fresh fruit instead of chocolate. I try not to make changes that I know will make me miserable. If you need chocolate or a glass of wine to get through the week, cutting those out will make you miserable and less likely to succeed. Don't forget to be realistic and honest with yourself. Cutting out chocolate or alcohol on one day a week is a good start!
There might be more than one way to get to your goal, e.g. doing more exercise and eating fewer calories are both ways to lose weight. People get very hung up on exercise (those who genuinely love going to the gym are the exception in my experience), but you don't have to spend an hour on the treadmill. Getting off the bus a couple of stops earlier, taking the stairs instead of the lift, or signing up to a dance class are all ways of fitting more exercise into your everyday routine. A pedometer is a good way of keeping track of how much walking you're doing.
Having set your goal and decided on the changes that you're going to make, decide on a reward for yourself once you've achieved this goal. This could be a small reward (e.g. a magazine, book, flowers or a bubble bath) for short-term achievements and a big reward (e.g. a massage, a new haircut, a new bottle of scent) for bigger achievements.
If you don't achieve your goal in the time you allowed yourself, don't beat yourself up about it. Consider why you didn't succeed and modify your next goal to be more realistic. You may need to make different changes.
Above all, be proud of yourself. Celebrate every success, no matter how small.
As L'Oreal would say, "You're worth it".
Now, back to the point...
One of the things that I've been learning recently is how to set goals for myself.
This is how it used to go:
Jo: I don't do enough exercise. I'm going to go and spend an hour working out at the gym.
Jo goes to the gym, gets dizzy after 5 minutes, goes home and spends the rest of the day in pain and dizzy, trying to sleep.
This, clearly, was not a good way to go about achieving my goal.
It's very easy, when living with a chronic illness, to get discouraged because there are so many things that we can't do. I find myself obsessing about each deterioration and each perceived failure, while overlooking achievements as being too minor to 'count' for anything.
With this in mind, it's even more important to set good goals - realistic goals that lead to success. We might not succeed every time, but the more we do, the more positive we feel about our ability to achieve things.
I use the SMART system when I set goals for myself. This is an acronym that stands for:
- Specific
- Measurable
- Achievable
- Realistic
- Timely
It's important that goals should be specific and measurable - how else can you know if you've succeeded? It's not enough to say "I want to lose weight" - you need to set a measurable figure on your weight loss. This has to be a realistic number. If you're on high-dose steroids, for example, which have weight gain and increased appetite as a common side-effect, you may need to allow yourself more time to achieve your goal, or to set a smaller initial target.
Give yourself a time limit so that you know when to stop and check how much progress you've made. You may need to have more than one target - a long-term target and a short-term target. Aiming to lose 2 lb (1 kg) in a month sounds more manageable than aiming to lose 22 lb (10 kg).
Once I've set my goal, I think about the changes that I need to make in order to achieve my goal. Sticking with the example of losing weight, I might decide to drink water instead of fruit juice, and to eat fresh fruit instead of chocolate. I try not to make changes that I know will make me miserable. If you need chocolate or a glass of wine to get through the week, cutting those out will make you miserable and less likely to succeed. Don't forget to be realistic and honest with yourself. Cutting out chocolate or alcohol on one day a week is a good start!
There might be more than one way to get to your goal, e.g. doing more exercise and eating fewer calories are both ways to lose weight. People get very hung up on exercise (those who genuinely love going to the gym are the exception in my experience), but you don't have to spend an hour on the treadmill. Getting off the bus a couple of stops earlier, taking the stairs instead of the lift, or signing up to a dance class are all ways of fitting more exercise into your everyday routine. A pedometer is a good way of keeping track of how much walking you're doing.
Having set your goal and decided on the changes that you're going to make, decide on a reward for yourself once you've achieved this goal. This could be a small reward (e.g. a magazine, book, flowers or a bubble bath) for short-term achievements and a big reward (e.g. a massage, a new haircut, a new bottle of scent) for bigger achievements.
If you don't achieve your goal in the time you allowed yourself, don't beat yourself up about it. Consider why you didn't succeed and modify your next goal to be more realistic. You may need to make different changes.
Above all, be proud of yourself. Celebrate every success, no matter how small.
As L'Oreal would say, "You're worth it".
Tuesday, 21 February 2012
Pacing
Spot the mistake in this scenario:
I have a rare good day and take the opportunity to do all the jobs that I have been wanting to do while I've been stuck in bed or on the sofa. This causes pain and fatigue, along with other unwanted symptoms, and I end up back in bed, or even in hospital. While I'm laid-up, I spend my time thinking of all the things that I want to do when I'm 'better' and then push myself past my limits at the first opportunity.
Sound familiar?
I think that many of us with chronic illnesses push our bodies to the limit. This may be a result of frustration at spending so much time unable to do ordinary (or fun!) things, guilt that we can't keep up with friends, the children, the housework, or our jobs, or excitement that we feel well enough to do things. It seems utterly counterintuitive to me to restrict my activities when I feel good as well as when I'm physically unable to do anything.
This is where the theory of pacing comes in. The idea is to break the cycle described above by carefully restricting activities on good days to avoid the 'crash' days. It's hard, but the incentive is there - imagine not having those crash days, or having them only rarely. It wouldn't matter that I didn't get everything done in a single day (or single afternoon) if I knew that there was a reasonable chance that I would be able to function the next day or even the day after.
One way to start is to think about what you can manage on a moderately bad day. Keeping a symptom diary can be helpful for this. If you know how much you can lift, walk, drive or eat on an average/bad day then you can use this as your baseline. Try to restrict yourself to this initially, gradually building up the level of activity according to how much you can tolerate. Remember that mental activity can also be draining - it's not just the physical tasks that take their toll.
Things that can help:
I have to confess that I'm bad at this. I'm stubborn and I'm proud. I don't like to admit that my body is failing me, but I know that my husband would rather we were able to go out to see a film or to hang out with friends than know that I had done all the housework by myself.
Hiring a cleaner isn't the only way to delegate tasks. Ordering groceries online and getting them delivered has given me back two or even three days each week. Good things to delegate are things that you don't particularly enjoy, that don't benefit from your personal input, or that cause you more symptoms. I'm not suggesting that you absolve yourself of all responsibility and spend your time watching Jeremy Kyle; far from it. People with chronic illness need activity to avoid deconditioning - doing a lot of nothing will reduce your exercise tolerance and may adversely affect conditions such as autonomic dysfunction.
So what do you do?
I have a rare good day and take the opportunity to do all the jobs that I have been wanting to do while I've been stuck in bed or on the sofa. This causes pain and fatigue, along with other unwanted symptoms, and I end up back in bed, or even in hospital. While I'm laid-up, I spend my time thinking of all the things that I want to do when I'm 'better' and then push myself past my limits at the first opportunity.
Sound familiar?
I think that many of us with chronic illnesses push our bodies to the limit. This may be a result of frustration at spending so much time unable to do ordinary (or fun!) things, guilt that we can't keep up with friends, the children, the housework, or our jobs, or excitement that we feel well enough to do things. It seems utterly counterintuitive to me to restrict my activities when I feel good as well as when I'm physically unable to do anything.
This is where the theory of pacing comes in. The idea is to break the cycle described above by carefully restricting activities on good days to avoid the 'crash' days. It's hard, but the incentive is there - imagine not having those crash days, or having them only rarely. It wouldn't matter that I didn't get everything done in a single day (or single afternoon) if I knew that there was a reasonable chance that I would be able to function the next day or even the day after.
One way to start is to think about what you can manage on a moderately bad day. Keeping a symptom diary can be helpful for this. If you know how much you can lift, walk, drive or eat on an average/bad day then you can use this as your baseline. Try to restrict yourself to this initially, gradually building up the level of activity according to how much you can tolerate. Remember that mental activity can also be draining - it's not just the physical tasks that take their toll.
Things that can help:
- Taking regular breaks
- Taking regular painkillers or other medications
- Short periods of activity
- Switching between activities (this avoids strain from repeating one thing for too long)
- Prioritising your tasks
- Delegating to others
- Planning to do things at 'good' times of day
I have to confess that I'm bad at this. I'm stubborn and I'm proud. I don't like to admit that my body is failing me, but I know that my husband would rather we were able to go out to see a film or to hang out with friends than know that I had done all the housework by myself.
Hiring a cleaner isn't the only way to delegate tasks. Ordering groceries online and getting them delivered has given me back two or even three days each week. Good things to delegate are things that you don't particularly enjoy, that don't benefit from your personal input, or that cause you more symptoms. I'm not suggesting that you absolve yourself of all responsibility and spend your time watching Jeremy Kyle; far from it. People with chronic illness need activity to avoid deconditioning - doing a lot of nothing will reduce your exercise tolerance and may adversely affect conditions such as autonomic dysfunction.
So what do you do?
- Try to keep yourself looking nice: wash your hair if you can (if not, dry shampoo is pretty good) and use scent and a little bit of make-up if they make you feel good. Get your hair cut into a more manageable style if necessary
- Find a wardrobe that works for you. Suits and high heels are great, but loose tops and trousers may be more appropriate if you're not working. Please don't sit around all day in the same pyjamas that you slept in. If nothing else, freshen up and change the PJs
- Try to have at least one thing every day that you feel pleased to have done. It might be a yoga class, craft, writing, speaking to a friend on the telephone or doing the washing up
- Stay in touch with friends and family. They probably won't understand the extent of your illness - few people do, but they're still part of your life story, and they probably care about you more than you realise
- Try to make contact with people who do understand
- Stay as active as you can, working from your baseline
- Eat good food at mealtimes. Try to make meals an event, even if you're alone or struggle with eating. Eating straight out of the packet while lying on the sofa is depressing for anyone.
- Get outside as often as possible, even if it's just for a cup of tea in the garden (perhaps not in this weather) or a walk to a local bookshop
- Don't give up entirely on work - if you can continue your job (even if you need help with rest breaks or flexible hours) that's great. Otherwise, see if there's anything else you can do - part-time, voluntary, self-motivated.
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