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.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Sunday, 27 May 2012
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
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.
Monday, 6 February 2012
Dehydration: The Narrative
The day after my last post, I spoke to my GP, who was concerned that I might be dehydrated. I honestly didn't feel too bad, and explained to her that I wasn't feeling more dizzy than usual on standing, and that I was still managing some oral fluids. Dr B was very persuasive, and as she's a new doctor, I thought I'd give her the benefit of the doubt. Better to have a doctor who is overcautious than one who really doesn't care at all. So Dr B faxed a letter to the A&E department at my local hospital, and I gathered a few bits and pieces and then made my way there.
As usual, the waiting room was heaving. There was barely a place to sit, especially as I was trying to avoid people who were eating things, so as not to aggravate my nausea. Of course, I ended up sitting in front of the vending machines. And then someone came and sat in the seat behind mine, chewed in my ear, wanted to talk to everyone in the vicinity (including me) and then, horror of horrors, pulled out a cigarette and lit up. Yes, it's illegal to smoke in public buildings, but did she care? Really not. Thankfully, that was enough to get her kicked out by security to wait outside until her name was called.
Despite the busyness of the department, I was so impressed by the attitude of all the staff. They were all so kind, going out of their way to look after all the patients who were waiting, and even kept a sense of humour. So I was feeling quite calm by the time I was eventually called back to be seen. My nurse got IV access (first time!) and checked my blood sugar, which was low. She got me started on the dextrogel, which is an oral gel to bring my blood sugar back up to normal, and then the doctor came in to see me.
Dr C, who has met me a few times before, and has an idea of my complex history, but walked into the cubicle, took one look at me, and stated "You're not dehydrated - you look fine!" He went on to say that I could have some IV fluids, and that I should let them know when I felt ready to go home. He ordered a venous gas, in addition to the bloods already requested, so that they could get an instant idea of my fluid status.
30 seconds later, I heard running, and Dr C burst through the curtain into my cubicle, to tell me that I was, in fact 'crispy dry' and acidotic (my blood was more acidic than usual - this is generally considered Not A Good Thing). There was quite a lot of running around while people organised lots of IV fluids and dextrose, which improved my mood and made me feel a lot better. I was able to talk myself out of an admission, on the condition that I would keep a close eye on my blood sugars and continue to try to push fluids.
I'm totally ready for this gastroparesis flare to be over. Pushing fluids at home is possible, but spending the weekend with family who don't know me very well was difficult. Having to turn down generous American hospitality, which included bowls and bowls of candy, chips, olives, etc. as well as HUGE meals. I maxed out on my antiemetics and forced down as much food as possible so as not to appear rude, but still had to field such comments as 'you really do eat very little' and 'you're like my Mum (my grandmother) - she always ate like a bird' and the more hurtful 'you're very big for someone who eats so little'.
Glad to be home!
As usual, the waiting room was heaving. There was barely a place to sit, especially as I was trying to avoid people who were eating things, so as not to aggravate my nausea. Of course, I ended up sitting in front of the vending machines. And then someone came and sat in the seat behind mine, chewed in my ear, wanted to talk to everyone in the vicinity (including me) and then, horror of horrors, pulled out a cigarette and lit up. Yes, it's illegal to smoke in public buildings, but did she care? Really not. Thankfully, that was enough to get her kicked out by security to wait outside until her name was called.
Despite the busyness of the department, I was so impressed by the attitude of all the staff. They were all so kind, going out of their way to look after all the patients who were waiting, and even kept a sense of humour. So I was feeling quite calm by the time I was eventually called back to be seen. My nurse got IV access (first time!) and checked my blood sugar, which was low. She got me started on the dextrogel, which is an oral gel to bring my blood sugar back up to normal, and then the doctor came in to see me.
Dr C, who has met me a few times before, and has an idea of my complex history, but walked into the cubicle, took one look at me, and stated "You're not dehydrated - you look fine!" He went on to say that I could have some IV fluids, and that I should let them know when I felt ready to go home. He ordered a venous gas, in addition to the bloods already requested, so that they could get an instant idea of my fluid status.
30 seconds later, I heard running, and Dr C burst through the curtain into my cubicle, to tell me that I was, in fact 'crispy dry' and acidotic (my blood was more acidic than usual - this is generally considered Not A Good Thing). There was quite a lot of running around while people organised lots of IV fluids and dextrose, which improved my mood and made me feel a lot better. I was able to talk myself out of an admission, on the condition that I would keep a close eye on my blood sugars and continue to try to push fluids.
I'm totally ready for this gastroparesis flare to be over. Pushing fluids at home is possible, but spending the weekend with family who don't know me very well was difficult. Having to turn down generous American hospitality, which included bowls and bowls of candy, chips, olives, etc. as well as HUGE meals. I maxed out on my antiemetics and forced down as much food as possible so as not to appear rude, but still had to field such comments as 'you really do eat very little' and 'you're like my Mum (my grandmother) - she always ate like a bird' and the more hurtful 'you're very big for someone who eats so little'.
Glad to be home!
Wednesday, 1 February 2012
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:
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.
Saturday, 3 December 2011
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:
- My name, address and date of birth
- Next of kin details (name and contact number)
- Details of my GP (name, address, telephone)
- My height and weight (important for some drug calculations)
- A list of my most important diagnoses - no details, just the name of the diagnosis
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:
- List of current medications and allergies
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!
Wednesday, 30 November 2011
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
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
Sunday, 27 November 2011
Blaming Myself
Among other things, I have what is known as 'difficult asthma'. This means that my asthma is severe and persistent, despite maximal medical therapy. It is par for the course that things flare up and I run out of things that I can try at home. At this point, I either try to wait it out at home, in the hope that I can keep things stable enough and give my lungs time to get their act together, or I take myself off to my local hospital. The latter option usually wins, even if I try the waiting option for a bit first.
I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.
This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.
I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.
Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.
While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.
The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.
I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.
This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.
I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.
Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.
While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.
The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.
I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Thursday, 10 November 2011
Advice for Hospital Visitors
As I am still in hospital, I feel well-placed to advise on things that would brighten my days while inpatient. People often tell me that they're not sure whether they should bring anything, and if so, what they should bring. I would like to make it crystal clear that your company is the best thing you could possibly give me, and I will be hugely grateful for the break in the monotony of the hospital day. But if you do feel like bringing something (or sending something if you're not able to visit), I've made a list of suggestions.
General tips (specific to me, but may also apply to others):
Most hospitals don't allow plants or cut flowers
Strong scents can set off breathing problems, either for me or for those around me
Space is limited, but hospitals tend to be ugly and boring and in need of decoration
I have gastroparesis and food allergies/intolerances, so there are lots of things that I can't eat at the best of times, which is exacerbated when I'm unwell.
Many hospitals don't have fridges or microwaves for patient use
My energy levels are pretty puny even when I'm well - please don't be offended if I doze on you. I promise I'm still grateful for your company!
So - wonderful things to bring:
1. A newspaper - I often feel cut off from the outside world while inpatient. The smaller, tabloid-sized papers are easier to handle. I don't mind if it's the free London paper (Metro or Evening Standard), or if it's yesterday's, or if you've already read it. In fact, I might even prefer it if you've read it so that you can point me in the direction of the best stories!
2. Email links to interesting news stories or blog posts, or just a chatty email/card.
3. A cup of nice (aka non-hospital) coffee. I drink soy or skinny latte (thanks for asking), or hot chocolate if you think that I might be in need of comfort. I love going out for coffee and rarely manage it, so having coffee brought to me in hospital is a real treat.
4. There are lots of things that I can't eat, and this list often increases when I'm unwell in hospital. However, chocolate always goes down well with the nurses! Most of my roomies have said that they crave fresh food that tastes of something - a fresh muffin from the coffee shop downstairs, a punnet of strawberries, deli snacks (e.g. hummous and breadsticks). A friend of mine brought me a mug and some herbal teabags, which was one of the nicest presents I've ever received. Sadly, I broke the mug, but I still think of Adam every time I drink jasmine tea!
5. Interesting drinks - I get cravings for diet coke and 7-up free, but Richard has brought fruit juices, smoothies and milkshakes, which have been much appreciated (and probably better for me, as they're not empty calories). A hilarious friend of mine once brought a bottle of Champagne and two glasses, which we drank while sitting on my hospital bed, gossiping and admiring the view over London - Big Ben, the London Eye and the Houses of Parliament. Can't imagine I'll ever repeat that experience, which makes it even more special!
6. Trashy fashion/celebrity/gossip magazines. I confess, they're about the level I can handle while in hospital!
7. Gel cling window decorations always brighten my day. Festive decorations (Christmas, Easter, Valentine's, etc.) are also welcome - spending holidays in hospital can be pretty miserable. Photographs of you, or of us together are a nice way to decorate the space. Don't forget the blu-tack!
8. Funny youtube videos to watch; recommendations for programmes on iPlayer/ITVplayer/4-OD.
9. Stories to tell - these don't need to be exciting. If I'm in hospital for asthma, I usually can't talk much without getting out of breath, so hearing about your day at work or your plans for the weekend is lots of fun for me.
10. Clothing - my dad always used to bring me brightly-coloured socks when I was in hospital as a child/teenager (I had quite a collection for a while!), but comfortable t-shirts or pyjamas would be well-received too.
11. Music (or recommendations on iTunes) - I spend a lot of time with headphones on, either watching TV or listening to music/radio.
12. Entertainment: Card or board games, puzzle books (e.g. sudoku, crosswords)
13. Things to make me feel attractive - hair ties, nail varnish, lipstick. A friend of mine came to visit me after I'd had surgery on both arms and was feeling a bit grotty - she tidied my hair and put make-up on for me. I can't tell you how much it improved my mood!
14. Practical things: shower gel, moisturiser, cleansing wipes.
15. Books to read (I really mean recommendations for my Kindle, as I'm not up to holding a real book for long these days) - nothing too hard on the brain. I'm not talking Dostoevsky or other Great Literature.
16. Small craft projects - I spend a lot of time knitting, but anything that occupies a few hours is a blessing.
17. Cups, mugs or straws: I have star-shaped bendy straws, which brighten the chore of drinking soluble medications or Ensure (bleuggh!). Many years ago, Richard gave me a pink plastic cup with fairies on it and a straw that curled up the outside. My fluid intake probably doubled as a result of that cup!
18. Jokes. The weaker the better. My brother is an absolute expert at this - we have been exchanging cheese-related jokes (and science jokes, but I won't bore you with those) for months now. What do you call a cheese that doesn't belong to you? Nacho cheese (not your cheese!)
19. Balloons. These are cheerful and colourful, and generally just wonderful!
20. A soft or colourful pillowcase, stuffed toy, microbead cushion or other tactile/cuddly thing.
BUT:
Really and truly, your company (either real or virtual) lifts my spirits more than you could ever know. That text that took you about a minute to send brightened my mood for hours, and I read it at least ten times; the half hour that you spent chatting to me over a coffee helped me to get through the day, which was otherwise filled with pain, struggling for breath,etc. Hospital can be a very lonely place, and the days and nights can seem unbearably long, especially if symptoms are severe. You can't change any of the crazy tricks that my body is playing on me, but you can certainly help the way that I view my life.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
General tips (specific to me, but may also apply to others):
Most hospitals don't allow plants or cut flowers
Strong scents can set off breathing problems, either for me or for those around me
Space is limited, but hospitals tend to be ugly and boring and in need of decoration
I have gastroparesis and food allergies/intolerances, so there are lots of things that I can't eat at the best of times, which is exacerbated when I'm unwell.
Many hospitals don't have fridges or microwaves for patient use
My energy levels are pretty puny even when I'm well - please don't be offended if I doze on you. I promise I'm still grateful for your company!
So - wonderful things to bring:
1. A newspaper - I often feel cut off from the outside world while inpatient. The smaller, tabloid-sized papers are easier to handle. I don't mind if it's the free London paper (Metro or Evening Standard), or if it's yesterday's, or if you've already read it. In fact, I might even prefer it if you've read it so that you can point me in the direction of the best stories!
2. Email links to interesting news stories or blog posts, or just a chatty email/card.
3. A cup of nice (aka non-hospital) coffee. I drink soy or skinny latte (thanks for asking), or hot chocolate if you think that I might be in need of comfort. I love going out for coffee and rarely manage it, so having coffee brought to me in hospital is a real treat.
4. There are lots of things that I can't eat, and this list often increases when I'm unwell in hospital. However, chocolate always goes down well with the nurses! Most of my roomies have said that they crave fresh food that tastes of something - a fresh muffin from the coffee shop downstairs, a punnet of strawberries, deli snacks (e.g. hummous and breadsticks). A friend of mine brought me a mug and some herbal teabags, which was one of the nicest presents I've ever received. Sadly, I broke the mug, but I still think of Adam every time I drink jasmine tea!
5. Interesting drinks - I get cravings for diet coke and 7-up free, but Richard has brought fruit juices, smoothies and milkshakes, which have been much appreciated (and probably better for me, as they're not empty calories). A hilarious friend of mine once brought a bottle of Champagne and two glasses, which we drank while sitting on my hospital bed, gossiping and admiring the view over London - Big Ben, the London Eye and the Houses of Parliament. Can't imagine I'll ever repeat that experience, which makes it even more special!
6. Trashy fashion/celebrity/gossip magazines. I confess, they're about the level I can handle while in hospital!
7. Gel cling window decorations always brighten my day. Festive decorations (Christmas, Easter, Valentine's, etc.) are also welcome - spending holidays in hospital can be pretty miserable. Photographs of you, or of us together are a nice way to decorate the space. Don't forget the blu-tack!
8. Funny youtube videos to watch; recommendations for programmes on iPlayer/ITVplayer/4-OD.
9. Stories to tell - these don't need to be exciting. If I'm in hospital for asthma, I usually can't talk much without getting out of breath, so hearing about your day at work or your plans for the weekend is lots of fun for me.
10. Clothing - my dad always used to bring me brightly-coloured socks when I was in hospital as a child/teenager (I had quite a collection for a while!), but comfortable t-shirts or pyjamas would be well-received too.
11. Music (or recommendations on iTunes) - I spend a lot of time with headphones on, either watching TV or listening to music/radio.
12. Entertainment: Card or board games, puzzle books (e.g. sudoku, crosswords)
13. Things to make me feel attractive - hair ties, nail varnish, lipstick. A friend of mine came to visit me after I'd had surgery on both arms and was feeling a bit grotty - she tidied my hair and put make-up on for me. I can't tell you how much it improved my mood!
14. Practical things: shower gel, moisturiser, cleansing wipes.
15. Books to read (I really mean recommendations for my Kindle, as I'm not up to holding a real book for long these days) - nothing too hard on the brain. I'm not talking Dostoevsky or other Great Literature.
16. Small craft projects - I spend a lot of time knitting, but anything that occupies a few hours is a blessing.
17. Cups, mugs or straws: I have star-shaped bendy straws, which brighten the chore of drinking soluble medications or Ensure (bleuggh!). Many years ago, Richard gave me a pink plastic cup with fairies on it and a straw that curled up the outside. My fluid intake probably doubled as a result of that cup!
18. Jokes. The weaker the better. My brother is an absolute expert at this - we have been exchanging cheese-related jokes (and science jokes, but I won't bore you with those) for months now. What do you call a cheese that doesn't belong to you? Nacho cheese (not your cheese!)
19. Balloons. These are cheerful and colourful, and generally just wonderful!
20. A soft or colourful pillowcase, stuffed toy, microbead cushion or other tactile/cuddly thing.
BUT:
Really and truly, your company (either real or virtual) lifts my spirits more than you could ever know. That text that took you about a minute to send brightened my mood for hours, and I read it at least ten times; the half hour that you spent chatting to me over a coffee helped me to get through the day, which was otherwise filled with pain, struggling for breath,etc. Hospital can be a very lonely place, and the days and nights can seem unbearably long, especially if symptoms are severe. You can't change any of the crazy tricks that my body is playing on me, but you can certainly help the way that I view my life.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Wednesday, 9 November 2011
The Hospital Bag (a Tangent)
I'm in hospital. Again.
Actually, I'm not just in hospital, but in my usual bed on my usual ward, and all the nurses are pleased to see me. I'm grateful for the welcome, but there's still a part of me that feels ashamed and saddened to be recognised as a regular in my local hospital.
One of the things that has made a huge difference to my quality of life despite the frequent (and sometimes lengthy) hospital admissions has been having a Hospital Bag.
This baby lives in the corner of our bedroom - forgotten, but still providing quiet comfort that I will have everything I need for the next admission. It takes away all the anxiety of having to try to ask someone else to gather up the necessary things in an emergency, and allows me a few creature comforts in addition to the usual basics.
So let's take a look inside!
What you see here is enough to keep me going in hospital for ten days. Everything lives in the bag, and it stays packed in this order so that other people can find things for me if necessary.
Can you tell that I like spots?
I'll give you a full contents list at the end of this post, but for now, let's take a look at some more pictures!
Clothes: The pile on the left is pyjamas, t-shirts in the middle, and trousers on the right.
All the clothes are light, because hospitals always seem to be excessively warm. The t-shirts have short sleeves for easy blood pressure measurements and easy access to IV lines.
Two pairs of the trousers are light yoga trousers and the third pair is denim. I do love my jeans, though they're not as comfortable as the yoga trousers for lounging around in hospital. The yoga trousers are easily rolled up to expose knees and ankles for physiotherapy.
Most of the rest of the bag is taken up with medical kit. I like to have my own alcohol gel, peak flow meter, oxygen saturation monitor and blood glucose meter. The boxes above the peak flow meter contain medication that isn't commonly used (I have an allergy to Salbutamol/Albuterol) - I can't take the alternative, so I like to have a good supply with me.
The pink spotty bag contains a few doses of all my other medications and a list of what I take, the dose, and the frequency.
The green spotty bag is just a wash bag.
The little extras include a salt grinder (I like my food salty, and need to eat lots of salt to keep my blood pressure up), scented body lotion, plastic bags for dirty laundry, and a couple of lipsticks! I used to carry a notepad and pen, but recently I have just been typing everything straight into my iPhone.
So there you have it.
Enough underwear for 10 days
6 t-shirts with short sleeves
2 pairs yoga trousers, 1 pair jeans
Supplies of regular medications, along with a list of names, doses and frequencies
Wash bag (toothbrush, toothpaste, razor, shampoo, comb, deodorant, eyeliner, mascara, lipstick)
Monitoring equipment: peak flow meter, sats probe, blood glucose meter
Alcohol gel and wipes
Scented body lotion, lip balm
Food: I always carry salt, and sometimes also have saltine crackers, nutrition bars, mints, ginger chews and glucose tablets. I know some people who bring tomato ketchup and tabasco sauce!
Plastic bags - I can't emphasise enough how useful these are!
Netbook, headphones, power cable, phone charger, kindle and charger (sometimes my DS too)
Earplugs, Sunglasses (in case of migraine), eye mask
Look out for a post tomorrow about the best things to take if you're visiting a friend in hospital (especially if that friend is me)!
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Actually, I'm not just in hospital, but in my usual bed on my usual ward, and all the nurses are pleased to see me. I'm grateful for the welcome, but there's still a part of me that feels ashamed and saddened to be recognised as a regular in my local hospital.
One of the things that has made a huge difference to my quality of life despite the frequent (and sometimes lengthy) hospital admissions has been having a Hospital Bag.
So let's take a look inside!
What you see here is enough to keep me going in hospital for ten days. Everything lives in the bag, and it stays packed in this order so that other people can find things for me if necessary.
Can you tell that I like spots?
I'll give you a full contents list at the end of this post, but for now, let's take a look at some more pictures!
All the clothes are light, because hospitals always seem to be excessively warm. The t-shirts have short sleeves for easy blood pressure measurements and easy access to IV lines.
Two pairs of the trousers are light yoga trousers and the third pair is denim. I do love my jeans, though they're not as comfortable as the yoga trousers for lounging around in hospital. The yoga trousers are easily rolled up to expose knees and ankles for physiotherapy.
The pink spotty bag contains a few doses of all my other medications and a list of what I take, the dose, and the frequency.
The green spotty bag is just a wash bag.
The little extras include a salt grinder (I like my food salty, and need to eat lots of salt to keep my blood pressure up), scented body lotion, plastic bags for dirty laundry, and a couple of lipsticks! I used to carry a notepad and pen, but recently I have just been typing everything straight into my iPhone.
So there you have it.
Enough underwear for 10 days
6 t-shirts with short sleeves
2 pairs yoga trousers, 1 pair jeans
Supplies of regular medications, along with a list of names, doses and frequencies
Wash bag (toothbrush, toothpaste, razor, shampoo, comb, deodorant, eyeliner, mascara, lipstick)
Monitoring equipment: peak flow meter, sats probe, blood glucose meter
Alcohol gel and wipes
Scented body lotion, lip balm
Food: I always carry salt, and sometimes also have saltine crackers, nutrition bars, mints, ginger chews and glucose tablets. I know some people who bring tomato ketchup and tabasco sauce!
Plastic bags - I can't emphasise enough how useful these are!
Netbook, headphones, power cable, phone charger, kindle and charger (sometimes my DS too)
Earplugs, Sunglasses (in case of migraine), eye mask
Look out for a post tomorrow about the best things to take if you're visiting a friend in hospital (especially if that friend is me)!
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Sunday, 6 November 2011
Five Things
So, yesterday - no blog post.
Just another little reminder of how things can just change in an instant with this particular condition. I got dizzy and blacked out, as happens sometimes with my autonomic dysfunction. I fell and dislocated my hip and shoulder, and spent the night in hospital having them put back. The hip was pretty straightforward (though painful), but the shoulder, as ever, was temperamental and took several attempts. While I was there, it was incidentally discovered that my sodium was critically low at 121 mmol/L (135-145 is normal). It's never just one thing, is it? I had some IV fluids and other medications, and came home late this morning.
In light of that, the topic for today seems rather appropriate - 5 things that changed my life. I've been ill for as long as I can remember, so there's no life-altering accident, or date that I can pinpoint as an anniversary of 'the illness'. Just day after day, deterioration after deterioration (and some pretty impressive improvements in between, for balance); as I've aged, more and more body systems have been involved, and I've needed more and more medical interventions in an attempt to maintain the status quo.
So what has really definitively changed my life?
Accepting that this is my life, and that no amount of wishing or worrying will change that. I am in awe of the beauty and majesty of this planet, and of the complexity of life, and I am so grateful to be here and alive. Yes, there are days when I weep and wail and bemoan my lot in life. Experiencing symptoms day in and day out is tiring, both physically and emotionally, but accepting the reality of it has given me the freedom to experience life more fully. I am better at looking after myself, and find it easier to reach out to others as a result. I try not to waste the opportunities that I have - those precious days when I have the chance to do something new or fun, and feel well enough to seize that chance!
Meeting my husband opened up a whole new world for me. Until that point, although I'd had boyfriends, I'd always wondered, secretly, whether there was an element of pity in the way that they viewed me. Not so with this one. I feel so lucky to be in love with a man who loves me wholeheartedly, accepts my limitations, praises my achievements, supports my ambitions and is by my side through everything. He is a remarkable and wonderful man!
Physics (or accepting that I am a supergeek) was another life-changing moment. Until I started to study physics to an advanced level, I'd always thought of myself as very average intellectually. Physics changed the way that I look at the world and the way that I look at myself. The more I learn about this complex world and some of the scientific processes underlying the way that it functions, the more awed I am.
Learning that there isn't always a quick fix. Doctors (especially surgeons) really, really want to be able to fix their patients. It's hard for them to accept that there isn't always a quick fix, or even a fix at all, and often even harder for them to relay that information to their patients. I would love to be able to have an operation that would fix even just one part of me, but in reality every intervention has knock-on effects. Sometimes the best option is to focus on quality of life and symptom control, rather than longing for that one definitive treatment that will make everything perfect.
Rescuing an elderly cat with health problems from a shelter, where the vets advised me that they didn't think she'd live much more than a year. Not only has Nutmeg given me four years of constant, adoring and loyal companionship, she has also helped me to focus on quality of life for myself, through the decisions that I've made on her behalf. Nutmeg has kidney failure, and her life could be prolonged with a special diet and daily medication. After a month of both, we realised (in discussion with our vet) that she was so miserable that it would be better for her quality of life to have a normal diet and no medication. We are so grateful that she now jumps around with excitement every mealtime, showing energy that we know she shouldn't have...
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Just another little reminder of how things can just change in an instant with this particular condition. I got dizzy and blacked out, as happens sometimes with my autonomic dysfunction. I fell and dislocated my hip and shoulder, and spent the night in hospital having them put back. The hip was pretty straightforward (though painful), but the shoulder, as ever, was temperamental and took several attempts. While I was there, it was incidentally discovered that my sodium was critically low at 121 mmol/L (135-145 is normal). It's never just one thing, is it? I had some IV fluids and other medications, and came home late this morning.
In light of that, the topic for today seems rather appropriate - 5 things that changed my life. I've been ill for as long as I can remember, so there's no life-altering accident, or date that I can pinpoint as an anniversary of 'the illness'. Just day after day, deterioration after deterioration (and some pretty impressive improvements in between, for balance); as I've aged, more and more body systems have been involved, and I've needed more and more medical interventions in an attempt to maintain the status quo.
So what has really definitively changed my life?
Accepting that this is my life, and that no amount of wishing or worrying will change that. I am in awe of the beauty and majesty of this planet, and of the complexity of life, and I am so grateful to be here and alive. Yes, there are days when I weep and wail and bemoan my lot in life. Experiencing symptoms day in and day out is tiring, both physically and emotionally, but accepting the reality of it has given me the freedom to experience life more fully. I am better at looking after myself, and find it easier to reach out to others as a result. I try not to waste the opportunities that I have - those precious days when I have the chance to do something new or fun, and feel well enough to seize that chance!
Meeting my husband opened up a whole new world for me. Until that point, although I'd had boyfriends, I'd always wondered, secretly, whether there was an element of pity in the way that they viewed me. Not so with this one. I feel so lucky to be in love with a man who loves me wholeheartedly, accepts my limitations, praises my achievements, supports my ambitions and is by my side through everything. He is a remarkable and wonderful man!
Physics (or accepting that I am a supergeek) was another life-changing moment. Until I started to study physics to an advanced level, I'd always thought of myself as very average intellectually. Physics changed the way that I look at the world and the way that I look at myself. The more I learn about this complex world and some of the scientific processes underlying the way that it functions, the more awed I am.
Learning that there isn't always a quick fix. Doctors (especially surgeons) really, really want to be able to fix their patients. It's hard for them to accept that there isn't always a quick fix, or even a fix at all, and often even harder for them to relay that information to their patients. I would love to be able to have an operation that would fix even just one part of me, but in reality every intervention has knock-on effects. Sometimes the best option is to focus on quality of life and symptom control, rather than longing for that one definitive treatment that will make everything perfect.
Rescuing an elderly cat with health problems from a shelter, where the vets advised me that they didn't think she'd live much more than a year. Not only has Nutmeg given me four years of constant, adoring and loyal companionship, she has also helped me to focus on quality of life for myself, through the decisions that I've made on her behalf. Nutmeg has kidney failure, and her life could be prolonged with a special diet and daily medication. After a month of both, we realised (in discussion with our vet) that she was so miserable that it would be better for her quality of life to have a normal diet and no medication. We are so grateful that she now jumps around with excitement every mealtime, showing energy that we know she shouldn't have...
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
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