On Being Neurotic (or not)

One of the things about being a young female with multiple troublesome symptoms is that at some point, it is almost inevitable that a medical professional will suggest that there's an element of neurosis.

In the best case scenario, there is incontrovertible evidence of physical disease and/or you find a team who believe your pain and other symptoms, and are prepared to work with you to find solutions.

The worst case scenario (and there is no fiction in this) is that the words 'neurotic' or 'hysterical' attach themselves firmly to your medical record, colouring every decision and every consultation. It's very hard to get an independent opinion on anything if even new doctors have those perjorative words ringing in their ears. If your doctor is convinced that you're the sort of anxious soul that makes mountains out of molehills it can be almost impossible to get any investigations done, let alone appropriate treatment.

Thankfully, although there have been plenty of doctors and nurses who've suggested that I'm 'just anxious', the physical evidence has always been there to convince them otherwise. I remember once as a teenager being wheeled into the A&E department of my local hospital by paramedics, in the middle of a severe asthma attack. The first nurse that we encountered told me very briskly that she couldn't hear a wheeze, and therefore I was probably having a panic attack, and should really pull myself together. Of course, when the doctors came in, they checked my blood gases (a measure of oxygen and carbon dioxide in a sample of arterial blood) and found that my oxygen was critically low and my carbon dioxide was beginning to rise. Both of these are signs of potentially life-threatening asthma. The reason that there was no wheeze to be heard was that there was almost no air moving in or out of my lungs. This is not generally considered a sign of teen angst.

Needless to say, I didn't die from that particular asthma attack (or any of the others that I've had since that time), but it scares me to think that the prejudices of one single person could have had very nasty consequences.

 I have heard many horror stories from other people, particularly those with gastroparesis, which is hard to diagnose without a high index of suspicion. The symptoms, much like a psychiatric eating disorder, can include vomiting after meals, aversion to food (hardly surprising if it always causes pain and/or nausea/vomiting), weight loss, bloating... If a 'diagnosis' of an eating disorder with attention seeking behaviour is made before a gastric emptying study can be performed, the person with gastroparesis may be sentenced to months or even years of inappropriate treatment and suffering before getting a proper diagnosis. Of course I assume that eventually they will succeed in getting a diagnosis and effective treatment. Everyone likes a happy ending.

The suspicion of neuroticism seems to rise in proportion to the number of vague or unexplained symptoms. Therefore syndromes like Ehlers-Danlos, systemic lupus erythematosis, and so many other syndromes or illnesses have a high proportion of people who were diagnosed long after first presenting with symptoms. In some cases this is down to lazy thinking or lack of knowledge. I freely admit that Ehlers-Danlos is rare, and therefore not at the top of the list of differential diagnoses for most doctors, but when a patient presents repeatedly with a host of unexplained symptoms, sometimes there is a link, and sometimes that link is a physical condition that can (and should) be treated.

Of course I understand that doctors do see patients who are neurotic or have health-related anxiety; people who present with mysterious symptoms that don't respond to conventional treatments. My plea to doctors would be to keep the flame of diagnostic curiosity burning, even if it's right at the back of your mind. By all means, encourage people to develop non-medical coping strategies and try to reduce the number of inappropriate investigations or invasive treatments, but keep your mind open, and be prepared to pursue a non-psychiatric diagnosis if the evidence seems to be pointing that way.

"When the facts change, my opinion changes" - John Maynard Keynes

I'm Coping (aka Managing Expectations with Doctors)

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!

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.

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.

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!

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".

Creating Your 'Dream Team'

I've just read a book called Living Well With Gastroparesis, by Crystal Saltrelli (who has a wonderful blog). It's full of great information and advice about gastroparesis, and the general tone of the book is really positive. I didn't want to put it down!

One chapter that stood out for me was about creating a Dream Team of healthcare professionals. This is something that I've been working on with my GP - finding and bringing together a team of people who can help me with all my various medical conditions and can work together to help me to live as well as I can with the conditions that I have and the symptoms that I experience on a daily basis.

I absolutely love Crystal's term, 'Dream Team'. I want to have a Dream Team looking after me, and I want to be a member of this Dream Team. This is not just about healthcare professionals making decisions about me; this is my life, and I have to make the most of it.

I don't really want to talk about the whole Dream Team. After all, people with different conditions may have totally different needs. Today I want to talk about three members of the Dream Team, relevant to anyone with a chronic illness.

The first and most important person in the Dream Team is you. You are the reason that this team exists, so you need to be motivated. I've written before, and will write again about getting organised and about treating your healthcare as seriously as you would treat a full-time job, so I'm not going to go into details of that here, apart from a few key points:

1. Plan: Get information about your condition(s), your medications, possible treatments, and good doctors/nurses/therapists in your area. Don't be afraid to ask for recommendations from friends, or online from other people with your condition. 
2. Keep good records: This is really worth a whole post on its own, but keeping track of the reports that you get from the people that treat you, test results, as well as your own records of symptoms, anything that you measure (e.g. blood sugars, peak flow, weight), is invaluable. You are the only person that has all of this information!
3. Have clear goals: 'Getting better' is not specific enough. Creating goals is a particular skill, and one that I'm still learning! The more specific you can be with your team about what you want to achieve, the easier they will find it to help you, and the more motivated you will be because you are working towards something.

Every Dream Team needs a good primary care physician - someone who is able to coordinate things for you. This person might be a GP or they might be a specialist, depending on your situation. For me, it's my GP, as I have at least two 'main' conditions that cause all the other problems. Having a respiratory physician as my primary, for example, would be totally unsuitable for the orthopaedic problems, and vice versa.

GPs, as the name suggests, are generalists. This is their biggest strength, in my opinion. However, even generalists have special interests, and it may be worth asking at your local GP surgery to find out if any of the doctors have special interests in diabetes or asthma or chronic illness in general. At my local surgery, there is one doctor with a special interest in chronic illness. Unfortunately, she only works part-time during the week and not at all during school holidays. I started to work through the other doctors in the surgery, never specifying which doctor I wanted to see, with some funny and some disastrous results. Eventually, I found a fabulous doctor after a recommendation from a local friend. She works five days a week, and the standard two-week wait for a routine appointment is worth it to me!

So, what is this person's role within your Dream Team?

Firstly, a word of warning: even the most wonderful GP won't be able to do all the hard work for you. You still need to take responsibility for lifestyle changes, keeping good records, taking your medications, and contacting your doctor if you need advice or if you notice a deterioration in symptoms.

What your GP can do (with your help and co-operation, of course):

• Arrange regular screening checks appropriate to your condition and the medications you take, e.g. regular DEXA (bone density) scans for those with significantly reduced mobility or long-term use of corticosteroids (e.g. Prednisolone)
• Review your condition and regular medications routinely and after emergency treatment or acute exacerbations
• Prescribe medications to protect against known side effects: if you take NSAIDs (e.g. Ibuprofen, Naproxen, Diclofenac) for a short-term problem and this is changed to a long-term regular treatment, your GP might consider prescribing a medication to protect your stomach
• Refer you to appropriate specialists: this may be if you develop a new symptom that isn't controlled by standard treatments, if your usual medications stop controlling your symptoms, if you need surgical intervention (or just a surgical opinion) for a problem, or for various other reasons
• Liaise with your specialists, following up on recommended treatment or review. It would be lovely if your specialists could all write to each other after every appointment so that they're all in the loop, but in practice this rarely happens. A good compromise is to ensure that you and your GP get copies of all letters and test results so that the responsibility doesn't rest on your memory and medical knowledge to pass information between your specialists

In practice, especially for those of us with complex conditions, it can be very easy to fall through the gaps in the system. Specialist hospitals often consider their role to be that of advisors, leaving the routine follow-up to those more local to the patient. Unfortunately, local hospitals are often scared of complex patients, preferring to assume that specialist overview is all that is required. There isn't really an easy solution to this, apart from taking personal responsibility and asking your GP to do the same.

The final person that I think has a crucial part to play in any chronic illness Dream Team is a psychologist. If you can find one with an interest in chronic illness (or pain, breathing disorders, etc.) that's even better. Living with a chronic illness can be hard. Maintaining healthy relationships with friends and family can seem next-to-impossible if you're unable to cook, eat, walk, or even sit up. Chronic pain, nausea, breathlessness and other symptoms can make one tend to feel antisocial. Psychologists can provide a healthy outlet for feelings of grief and frustration, and can often teach techniques to manage symptoms as well as ways to explain symptoms and prognosis to family and friends.

Psychologists often get a bad rep in this country. I have frequently encountered nurses and doctors who drop their voices when mentioning psychology or psychiatry. I do understand that there's stigma associated with psychiatric illness, but this isn't going to go away if we just pretend it doesn't happen, and even those of us who would consider ourselves to be mentally 'healthy' can benefit from psychological support. If you're offered the opportunity to talk to a psychologist, I would recommend that you jump at the chance, and if you're not offered, don't be afraid to ask.

Remember, you need to be the driving force behind your Dream Team!

Negotiating with Doctors

Once again, a brief apology for being out of touch. I know that many of you have been worrying about me. I haven't been as well as usual, but am managing things at home with the help of my wonderful doctor.

I saw my doctor, Dr B, this morning. I had a double appointment and took with me the list that I made after our last meeting (which I described in my last post). Dr B read through it all carefully, even checking that I was happy with all my current medications. After listing all my symptoms (yes, all of them), I wrote a Top 10 list of the things that affect my quality of life the most, and suggested ways in which these things might be treated.

Many patients, however knowledgeable they are about their own condition, are reluctant to make suggestions, ask to try specific treatments, or even to ask for a referral to a specialist. Many of us even shy away from telling doctors how bad things really are for fear of being labeled as drug-seeking or malingering.

A good doctor will listen to your suggestions and explain what they think. They may not agree with you, but you deserve an explanation rather than a flat-out refusal. If you have a reason for your suggestion (e.g. it's part of the guidelines for treatment of your condition, or peer-reviewed research from a reputable journal), explain that to your doctor. Your doctor deserves an explanation as much as you do, and they're more likely to agree with you if they understand your reasons for suggesting a particular treatment.

The number of conditions that most doctors encounter in a single week is daunting. The number of guidelines for each of those conditions is daunting. This is just for the common conditions. Expecting your doctor to know the guidelines for your rare conditions as well as you do is not fair. They may find time to read the guidelines for your condition once they've met you, but if you want to be proactive and read them, then do, though remember that your doctor may have good reasons for treating you differently, especially if they're a specialist. Ask them to explain their reasons.

Most doctors work extremely hard, and are extremely knowledgeable. This doesn't mean that you're not allowed to disagree with them, and certainly doesn't mean that you can't see a different doctor if you feel that they're not a good 'fit' for you. I saw a GP at my local clinic when I was having a severe asthma flare. I'd increased my steroids to maximum and despite using my nebuliser every 2 hours, was still short of breath at rest. This particular GP recommended that I go home and start to reduce my steroid dose. This advice was not just ill-informed (about a condition that affects approximately 1 in 10 people in the UK), but actually dangerous, and the doctor refused to listen to any of my suggestions. Needless to say, I try to avoid that doctor now.

But back to my lovely doctor. Dr B was concerned about my chest and my stomach. I do have a chest infection, but I explained to Dr B that I've increased my steroids and nebulisers to maximum, and that I have antibiotics on hand, which I will take if I get a fever or other concerning symptoms. I've struggled a bit with keeping my oxygen levels up, but apart from that I feel that my symptoms are as well-controlled as they can be, and that I just need to support my body while it recovers from this infection. Dr B checked my oxygen levels and peak flow, and listened to my chest, and agreed that I'm giving my body enough support for now.

My stomach was a different matter. I've not been able to keep food or water down since Sunday night. This is not a new thing for me, but it is worse than usual. Dr B was keen that I should go straight to the hospital for IV fluids. I don't feel that I'm at that point yet, and explained what I planned to do in order to avoid the hospital:

1. Set a timer every 15 minutes and try to drink 5 - 10 ml each time it rings
2. Vary the liquids I'm drinking (I can't tolerate Dioralyte rehydration solution, but I can get electrolytes from other liquids)
3. Monitor my output
4. Take regular anti-emetics

Dr B agreed that this was a reasonable plan, but wanted me to promise that I would go to the hospital if things 'got worse'. I find this a bit vague, as it could mean anything from managing to drink 10 ml less than yesterday all the way through to passing out from severe dehydration. So we agreed specific parameters:

1. If my systolic blood pressure drops below 100 mmHg, or if I faint (this is slightly difficult, as I have autonomic dysfunction, so I do faint sometimes anyway, but I still think it's reasonable)
2. If my resting heart rate increases above my normal by 10 bpm
3. If my urine output drops below 300 ml per day
4. If I'm still not keeping liquids down by Friday

I left the appointment feeling very positive and confident that I could manage my own condition, and that I knew how to recognise problems and what to do if things deteriorate.

So, tips for successful appointments:

• Go into the appointment with a plan - what do you want to address at this appointment?
• Be honest about your symptoms. Write them down if necessary.
• Don't be afraid to ask questions.
• Make suggestions if you have them.
• Listen to your doctor's advice.
• Ask for clarification if necessary.
• Make sure you come away with a plan, written down if it helps you to remember.

Being Proactive

One of the things that I find most difficult about living with complex chronic illness is trying to stay on top of everything. For most healthy women, remembering to book a cervical smear test every three years after receiving the reminder letter is about as proactive as they need to be. For those of us with chronic illnesses, things can get a little more involved.

For a long time I have been trying to get one of my doctors to agree to be 'in charge' of my care. This would mean that they receive copies of all test results, hospital discharge letters and reports from other specialists. They would be responsible for coordinating referrals, prescriptions and routine testing, and would be able to help me to be proactive about my medical treatment.

Unfortunately, many doctors are reluctant to take on this complicated and time-consuming responsibility, either because they don't feel sufficiently specialised, or because they are too specialised and don't feel that it would be appropriate for them to handle those problems outside their area of expertise.

Finally, however, I have found a GP who is willing to take on this role. I met with her for the first time today, and have another appointment in a fortnight to discuss everything. Dr B has asked me to write a list of everything that I want to discuss. I already have a folder with copies of test results, diagnoses, letters from specialists, lists of medications, etc. so that's where I'm going to start. The red folder is approximately four inches thick, and it seems a little unkind to expect Dr B to read everything, so I need to make an executive summary!

Medications:
Name of medication, dose, route (e.g. tablet, inhaler, creams, eye drops), how often I take it, when it was first prescribed, why it was prescribed, side effects, and how well it works to control the symptoms for which it was prescribed.
Include regular prescribed medications, medications that I take infrequently or in an emergency (e.g. Adrenaline injection, emergency stash of antibiotics), supplements, over-the-counter medications.

Past medical history:
This is the bit that I tend to skim a bit. I've had 30 years of surgeries, hospital admissions, diagnoses, medications, splints and braces, etc. I'll probably skim it again and try to incorporate the most important bits into the systems review (coming up next!).

Systems review:
So as not to miss out anything (I often forget to mention that I'm deaf, for example), my list of problems will be ordered according to body system. This probably seems excessive to you, but to me it seems like a logical way of drawing together my past medical history, my current symptoms and the treatment that I currently receive. I'm going to use a checklist from http://medinfo.ufl.edu:8050/other/itt/ros/ros_list.pdf with a few additions of my own.


A few things:
Be detailed. Give examples to illustrate symptoms. For example, indigestion means different things to different people. Try to describe the symptoms, for example the location, severity and type of pain (ache, burning, stabbing, etc.), when it started, how long it has been there, whether it is constant or intermittent, whether it stays in one place or radiates to other parts of the body, anything that makes it feel worse or better (medications, heat, rest, certain movements), whether it is better or worse at particular times of day or night, whether it is associated with any other symptoms (e.g. sweating, vomiting, shaking, blurred vision).

Be thorough. The checklist is full of potentially embarrassing questions. Don't avoid answering those overly personal questions. If you want your doctor to have a full understanding of everything that you're experiencing as a result of your medical condition (or as a result of the medications used to treat that condition), you have to be prepared to talk about some unpleasant things.

Don't expect your doctor to understand how a particular symptom affects you without you telling him or her. Some people manage just fine without being able to lift more than 1 kg; for others this would be totally disabling.

Don't try to make light of your symptoms. If you're anything like me, you don't want to come across as complaining, pessimistic or negative, but this is the time to tell it as it is. This is your opportunity to find solutions, which isn't going to happen if you're busy pretending that you're coping absolutely fine and that you don't have any problems at all. Trust me on this one.

And finally, if you have suggestions, requests or ideas about how things could be treated, or what you'd like done to improve things, don't be afraid to tell your doctor. You're a member of your own medical team, and you're the one that has to live with the effects of any treatment plan, as well as living with the condition in the first place.

Being a Helpful Patient

There is certain information that your doctors will always need to know. This can be as simple as your name and address and your PCP's details to more detailed information about your past medical history and the medications that you take.

I have a big medical folder of my own records (known as The Big Red Folder). This is split into sections for letters from specialists, test results, relevant publications and articles, diet sheets, exercise sheets from physio, and all sorts of other useful things. Most of the time this folder lives at home with me. It contains the charts that I showed you last week that I use to keep track of my symptoms and the medications that I take.

I am so grateful that I started compiling my medical paperwork in this way, and have learned lessons from other people with complex medical conditions. One of these lessons is to take time every 6-12 months to write to my doctors and request copies of important test results. It can be so helpful to have an MRI report and the scan itself on CD to show a new doctor, rather than having to take my word for what it showed, or waste time for them to request the results from another specialist. I have so many doctors and other health professionals working with me that it can be really hard to keep track of all the tests and all the results. I am the only person who knows about every test and every appointment, so I feel a sense of responsibility to keep good records.

Right at the front of my Big Red Folder is a section of essential information. This is an 'executive summary' that covers all the most important points in my medical history. I have been asked so often by doctors in the ER if they can borrow/photocopy this executive summary that I now carry spare copies in the folder.

So where to start? Well, think back to the last time you were in the ER. You may remember being asked the same questions over and over by the different people that looked after you. There are certain things that your doctors will always need to know.

My executive summary looks like this:

Page 1:

1. My name, address and date of birth
2. Next of kin details (name and contact number)
3. Details of my GP (name, address, telephone)
4. My height and weight (important for some drug calculations)
5. A list of my most important diagnoses - no details, just the name of the diagnosis

Page 2:

Important contact details:

Name, address and contact details for all the specialists that care for me, including my hospital number (patient reference number) for each hospital/clinic. This list includes bleep numbers and email addresses where relevant. For example, it has the bleep number of the Specialist Registrar on-call for asthma at the Royal Brompton Hospital, which is the specialist lung hospital where I'm treated. If I'm admitted to any other hospital, it can be helpful for them to get in touch with one of my specialists as a matter of urgency.


Page 3:

1. List of current medications and allergies

The allergies are in a highlighted box at the top of the page. On the other side of the page is a list of medications that are contraindicated for people with my conditions. Because I have rare and complex conditions, I would rather tell people the basics again and again than risk them make a mistake with my health because they didn't know.

The rest of the page is taken up with a list of my regular and 'as required' medications. For each medication I have given the generic name (unless it's important for absorption or allergy reasons that I take a particular brand), the dose, the route, the frequency and the reason that I take it.

Make sure to include any medications that you buy over the counter, supplements that you take, and your method of contraception, if appropriate.


Page 4:

Past Medical History:

Just a list of dates and important events. For the sake of brevity, I don't include all hospital admissions, just the things that seem most relevant to me - childhood illnesses, major diagnoses, surgeries.

Page 5:

Family History:

Try to restrict this to immediate family (siblings, parents, grandparents) unless there is an inherited condition that can be seen more clearly by including more family members. Even if you don't have inherited diseases in your family, it's worth noting the causes of death of close family members and the incidence of things like diabetes, cancer and heart/lung disease.

Social History:

This is just a bit about you: 

- Do you smoke (how much and for how many years)?

- Do you drink (what, how much, how often)?

- Do you take any illegal drugs? If so, what and how often?

- Do you live in a house/flat/castle? Are there stairs?

- Do you have pets/children/other dependents?

- Who looks after your care needs if you have any?

- Do you work? What do you do, how many hours do you work?

- Are you right or left handed?

That's about it for my executive summary. Of course, it's not rocket science, but it's amazing how things get forgotten in the heat of the moment. Having a printed, legible list to give to anyone treating you can relieve a lot of the pressure of acute illness (for you and your loved ones) and allow you to focus on getting the treatment you need to get better.

More on The Big Red Folder tomorrow!

That Fine Line

Those of us with chronic illnesses live with symptoms day in and day out. The severity of those symptoms may vary, and some of them may go away from time to time, but we never feel 'well' in the way that we would like.

In order to manage these daily symptoms, many of us have medications and treatments available to us that would usually require hospital admission: home oxygen, intravenous medications, nebulisers, strong medications. These are not cures, just ways of maintaining the status quo and allow us to stay at home with a reasonable quality of life.

Difficulties arise, however, when things deteriorate despite all the medications that we have in our 'chronic illness toolkit'.

How far should we allow things to deteriorate before we 'give in' and accept that we need extra help and support? How long do we wait for the 'rescue' medications that we have to kick in? It may be that the deterioration is gradual, and insidious, and it can seem hard to know the point in the downward trend at which we should seek advice. Worse still, we can get so caught up in just dealing with each moment as it comes that we stop looking at the bigger picture and asking how we are going to improve things.

These are difficult questions for anyone reluctant to 'bother' their doctor (or other health professional), but even more so for people with chronic illnesses. Often, our illnesses are rare, and may be complex. While the necessary treatment may be simple, getting it may be another matter.

Flare-ups often seem to happen at night or at the weekend, especially if it is a holiday weekend. This poses yet another question of whether we try to wait until we can get in touch with our own specialists, or whether we need help sooner than that. I feel as though I am treading a fine line whenever I am in the position of needing to make this decision.

Emergency Departments are not really set up to treat those of us with complex medical conditions. They are very good at what they do, which is to treat accidents and acute illness. It is unfair to expect them to be able to handle rare medical conditions.

Of course, the ideal is to be able to contact one's own specialist for advice and treatment. They are far better placed to be able to tweak routine treatment and instigate new therapies than any healthcare professional meeting you for the first time.

But what happens when you really can't get in touch with your own doctors?

Alternative communication methods:
Telephone and email can be excellent ways to get in touch with your doctors. Email, in particular, allows you to give all the relevant details, taking time to write carefully and accurately, without the panic of an emergency conversation. It also allows you and your doctor to have a written record of the enquiry and any advice given.

Having a written protocol in place for emergencies:
If your illness is of the type that might require emergency treatment, you could ask your doctor or nurse specialist to write a protocol for you to take to the Emergency Department with you. For example, if you are known to have a certain type of seizure that responds well to particular medications, this could all be put in writing, with a copy given to your local ED and another copy for you to carry around with you. In the UK, it's possible for patients to be 'flagged' with the local ambulance service, so that any paramedics called out are prepared with relevant information. MedicAlert tags and cards (and equivalent) also provide valuable information if you're not able to give details to those treating you.

Be prepared:
If you can, try to predict things that might go wrong. It's not unrealistic to think that someone with gastroparesis might have a bad flare in which they can't eat or drink, and so need IV hydration and anti-sickness medications (and possibly also gastric decompression and artificial nutrition).

The more difficult cases arise when those unpredictable flare-ups occur. Either unrelated illnesses that worsen the underlying condition, or new symptoms.

In this case, it is important to act as sensibly as possible. Get advice, either from your own healthcare providers or from someone who knows you well, rather than from an overworked out-of-hours or emergency physician, in the first instance.

If the answer is that you need medical intervention (or at least assessment), the next question is when? Can you wait until you are able to see your own doctor? Is there anything more that you can do at home to keep things as stable as possible while you wait?

If the answer to 'when?' is 'now', then you have to ask 'where?' -
1. Out of hours GP service
2. Walk-in (or minor injuries) unit
3. Emergency Department (perhaps by ambulance, if necessary)

So, what are you waiting for:
Do you need help?
When do you need help?
Where are you going to get this help?

And with that, I am going to take another dose of my rescue medications now in the hope that I can delay needing help from my own doctor until tomorrow, when she is next in clinic.

Wish me luck!

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Researching a New Diagnosis

I like to consider myself an expert patient. I am familiar with the signs and symptoms of my illness, the medications used to treat it (including those that I don't take) and their interactions and side effects. I know about the non-medical and complementary therapies used to treat my illness, and manage my own treatment plan with support from my GP and specialists.

This is the result of many, many years of accumulated research.

But where should you start with a new diagnosis?

I found myself asking that very question a few years ago, when I received a new diagnosis to go alongside the existing ones.

Receiving the diagnosis was a relief, as I knew that something was very wrong, so it was helpful to have a name for it so that I could start to understand. What I found frightening was that I couldn't answer people's questions about this rare condition, couldn't suggest anything to my GP, and felt totally unfamiliar with the new medications used to treat it.

So where did I start?

Get a general overview of the condition:

www.patient.co.uk contains numerous articles about medical conditions, many of them written by doctors and for doctors. This was my starting point for looking up the primary diagnosis, and later, the other diagnoses that came along with the primary one. Get an understanding of how the illness presents, is diagnosed, is treated, and how things might progress in the future. Learn about how the illness affects the normal functioning of your body (and learn about the normal functioning if you don't already know).

Try to steer clear of websites that promise miracle cures, or that promote particular products. What you need at this early stage is thorough, reliable information, which will provide a foundation for your future expertise. The NHS website, eMedicine, and Wikipedia are all relatively reliable, though you may find some of their articles a little light on detail.


Find out more from a patient perspective:

Look for any societies or charities specifically supporting people with your diagnosis. Read their articles and message boards, ask questions and compare other people's experiences with your own. Think of this as adding colour and texture to the basic understanding that you gained from the first step above.

Medical websites can give facts and figures, but you have an advantage (?!) in that you know what it is like to actually have this condition and live with it. Reading about acid reflux, for example, without ever experiencing it, is like reading about the taste of a peach without ever eating one.

Look for published research:

PubMed was my next port of call, to see what research had been published about my condition. This is a quick step, just to see if there is anything new or on the horizon for your condition. You may not be able to access full text of research papers, but you can always ask your GP or specialist to print off articles for you, or just ask them what they think about a particular piece of research.

Find out more about drug treatments:

Patient information leaflets provided with any prescribed or over-the-counter medication are helpful. Make sure you read them, even if you don't remember everything they say. It's important to know if a new symptom could be a side-effect of medication or an interaction with another medication that you take. The BNF (British National Formulary) has more details about doses, adverse effects and interactions. Your pharmacist will have a copy and might let you borrow or keep an old edition if they have one knocking around. Try to understand what each medication does and why it has been prescribed.

Complementary and lifestyle measures:

This is probably the most difficult topic to research, as results are often anecdotal. Ask questions of other people with your condition, your GP, your therapists and specialists. Talk to complementary therapists (make sure they're registered with a recognised governing body, and get a personal recommendation if possible). Remember that your mind is very important in all of this - relaxation and meditation may be a valuable part of your treatment, along with more physical interventions, such as acupuncture, yoga, diet and exercise, osteopathy, etc. Most of all, use your common sense. Don't stop taking prescribed medications without consulting your GP, or try something that your gut tells you is risky.

Finally:

Try to keep track of your symptoms - what makes them better or worse, what effects (good and bad) you notice from the medication you are prescribed and from any lifestyle changes you make. Take every opportunity you can to learn more about your condition, participating in teaching for medical students or expert patient programmes, if they're offered to you.

This is your life; your medical condition, and you can take charge. You are the only one who can see the whole big picture of your body and how it's affected by various things (illness, food, exercise, medication, etc.), so you have the right to be the boss of your medical team. Use other people's expertise in addition to your own, but don't forget that you are the leader and the core of the team. This is your life, and you have a vested interest in living it to the very best of your ability.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J