It's a week until my birthday, and I've been thinking a lot about getting older.
I can't say that I'm looking forward to the day itself. I'm currently stuck in a bit of a gastroparesis flare, so there will be no cake, no Champagne, and certainly no 7-course dinner at Le Gavroche for me! None of my clothes fit me, I have even less energy than usual, and forcing myself to take in at least some nutrients is causing pain, nausea and vomiting.
Despite that, I like birthdays, even this one. Every year I feel pride at surviving another year. Yes, every year I survive things that I might not have survived. More than that, I celebrate having survived the pain, nausea, boredom, frustration, breathlessness. I have survived everything that my failing body has thrown at me and everything the medical world has thrown at my failing body.
I'm so grateful to have the opportunity to have lived long enough to get into my 30s; so grateful to have had the opportunity to marry my very best friend, who loves me more than I've ever been loved before; to have travelled the world, met amazing people, and spent time with those who mean the most to me.
I look forward to celebrating this next birthday, regardless of whether I'm healthy enough to celebrate in the way that I would like. It's enough for me to be here - everything else is a bonus!
Wednesday 29 February 2012
Monday 27 February 2012
Rebellion
Chronic illness doesn't allow much room for rebellion. It takes people from all backgrounds and walks of life and forms them into a homogeneous group - patients.
The life of a patient with chronic illness is filled with constant reminders of illness: not just symptoms, but regular (and as required) medications, special diets and regular monitoring, both at home and in hospitals/clinics. There's not much wiggle room in this sort of lifestyle.
I have medications that are taken every 4, every 6, every 8, every 12 and every 72 hours. 21 different ones, in fact. Some of them have to be taken with food; others on an empty stomach. Some medications are fine when taken in combination with other medications; some have to be taken at least a couple of hours apart.
These medications, in addition to their desired effects on my tumbledown body, have so many side effects. I'm sure I'm not alone in having medications to treat the effects of other medications. Less serious considerations include drowsiness (Promethazine works beautifully for me, but knocks me out completely for approximately 12-15 hours), nausea, abdominal pain, dizziness and tachycardia. It's not always possible, but as far as I can, I try to take these medications when I don't need to drive, be alert (and/or awake), or alone. Just for fun, our stairs are entirely open on one side, so tackling the stairs is not something to be done when drowsy or dizzy!
I am supposed to monitor my weight, calorie and fluid intake, blood sugar, peak flow (a measure of how restricted my airways are), oxygen saturations, blood pressure, pulse and temperature every day. I also have a special (and very restrictive) diet that I have to follow.
I have braces for my shoulders (including slings), wrists, elbows, knees, ankles and feet. I have a selection of crutches, sticks and wheelchairs.
This is my reality. Every single day.
There are days when this feels far, far too much, and I get an overwhelming desire to escape from all of it - from the symptoms and from all the medications, the testing, and the medicalness of it all.
I owe my life to many of the medications that I take, and know that not taking these would win me at least a week or so in hospital. I don't want to take medications, but my desire to stay out of hospital is even greater. So I divide my medications into two categories: essential and optional. The latter category is mainly made up of painkillers and supplements. Missing a dose or two of these is bad, but not bad enough to land me up in hospital. So, when I'm feeling rebellious and as though I can't stand to take any more medication, I don't take these meds.
Yes, this causes pain, but I can convince myself that it's worth it just for that moment of freedom from medications. This is what normality feels like, right?
The life of a patient with chronic illness is filled with constant reminders of illness: not just symptoms, but regular (and as required) medications, special diets and regular monitoring, both at home and in hospitals/clinics. There's not much wiggle room in this sort of lifestyle.
I have medications that are taken every 4, every 6, every 8, every 12 and every 72 hours. 21 different ones, in fact. Some of them have to be taken with food; others on an empty stomach. Some medications are fine when taken in combination with other medications; some have to be taken at least a couple of hours apart.
These medications, in addition to their desired effects on my tumbledown body, have so many side effects. I'm sure I'm not alone in having medications to treat the effects of other medications. Less serious considerations include drowsiness (Promethazine works beautifully for me, but knocks me out completely for approximately 12-15 hours), nausea, abdominal pain, dizziness and tachycardia. It's not always possible, but as far as I can, I try to take these medications when I don't need to drive, be alert (and/or awake), or alone. Just for fun, our stairs are entirely open on one side, so tackling the stairs is not something to be done when drowsy or dizzy!
I am supposed to monitor my weight, calorie and fluid intake, blood sugar, peak flow (a measure of how restricted my airways are), oxygen saturations, blood pressure, pulse and temperature every day. I also have a special (and very restrictive) diet that I have to follow.
I have braces for my shoulders (including slings), wrists, elbows, knees, ankles and feet. I have a selection of crutches, sticks and wheelchairs.
This is my reality. Every single day.
There are days when this feels far, far too much, and I get an overwhelming desire to escape from all of it - from the symptoms and from all the medications, the testing, and the medicalness of it all.
I owe my life to many of the medications that I take, and know that not taking these would win me at least a week or so in hospital. I don't want to take medications, but my desire to stay out of hospital is even greater. So I divide my medications into two categories: essential and optional. The latter category is mainly made up of painkillers and supplements. Missing a dose or two of these is bad, but not bad enough to land me up in hospital. So, when I'm feeling rebellious and as though I can't stand to take any more medication, I don't take these meds.
Yes, this causes pain, but I can convince myself that it's worth it just for that moment of freedom from medications. This is what normality feels like, right?
Sunday 26 February 2012
Setting Realistic Goals
Before you start, if you haven't read Flo's response to my post on Pacing (over at disabledmedic.blogspot.com) do it now - it's great!
Now, back to the point...
One of the things that I've been learning recently is how to set goals for myself.
This is how it used to go:
Jo: I don't do enough exercise. I'm going to go and spend an hour working out at the gym.
Jo goes to the gym, gets dizzy after 5 minutes, goes home and spends the rest of the day in pain and dizzy, trying to sleep.
This, clearly, was not a good way to go about achieving my goal.
It's very easy, when living with a chronic illness, to get discouraged because there are so many things that we can't do. I find myself obsessing about each deterioration and each perceived failure, while overlooking achievements as being too minor to 'count' for anything.
With this in mind, it's even more important to set good goals - realistic goals that lead to success. We might not succeed every time, but the more we do, the more positive we feel about our ability to achieve things.
I use the SMART system when I set goals for myself. This is an acronym that stands for:
- Specific
- Measurable
- Achievable
- Realistic
- Timely
It's important that goals should be specific and measurable - how else can you know if you've succeeded? It's not enough to say "I want to lose weight" - you need to set a measurable figure on your weight loss. This has to be a realistic number. If you're on high-dose steroids, for example, which have weight gain and increased appetite as a common side-effect, you may need to allow yourself more time to achieve your goal, or to set a smaller initial target.
Give yourself a time limit so that you know when to stop and check how much progress you've made. You may need to have more than one target - a long-term target and a short-term target. Aiming to lose 2 lb (1 kg) in a month sounds more manageable than aiming to lose 22 lb (10 kg).
Once I've set my goal, I think about the changes that I need to make in order to achieve my goal. Sticking with the example of losing weight, I might decide to drink water instead of fruit juice, and to eat fresh fruit instead of chocolate. I try not to make changes that I know will make me miserable. If you need chocolate or a glass of wine to get through the week, cutting those out will make you miserable and less likely to succeed. Don't forget to be realistic and honest with yourself. Cutting out chocolate or alcohol on one day a week is a good start!
There might be more than one way to get to your goal, e.g. doing more exercise and eating fewer calories are both ways to lose weight. People get very hung up on exercise (those who genuinely love going to the gym are the exception in my experience), but you don't have to spend an hour on the treadmill. Getting off the bus a couple of stops earlier, taking the stairs instead of the lift, or signing up to a dance class are all ways of fitting more exercise into your everyday routine. A pedometer is a good way of keeping track of how much walking you're doing.
Having set your goal and decided on the changes that you're going to make, decide on a reward for yourself once you've achieved this goal. This could be a small reward (e.g. a magazine, book, flowers or a bubble bath) for short-term achievements and a big reward (e.g. a massage, a new haircut, a new bottle of scent) for bigger achievements.
If you don't achieve your goal in the time you allowed yourself, don't beat yourself up about it. Consider why you didn't succeed and modify your next goal to be more realistic. You may need to make different changes.
Above all, be proud of yourself. Celebrate every success, no matter how small.
As L'Oreal would say, "You're worth it".
Now, back to the point...
One of the things that I've been learning recently is how to set goals for myself.
This is how it used to go:
Jo: I don't do enough exercise. I'm going to go and spend an hour working out at the gym.
Jo goes to the gym, gets dizzy after 5 minutes, goes home and spends the rest of the day in pain and dizzy, trying to sleep.
This, clearly, was not a good way to go about achieving my goal.
It's very easy, when living with a chronic illness, to get discouraged because there are so many things that we can't do. I find myself obsessing about each deterioration and each perceived failure, while overlooking achievements as being too minor to 'count' for anything.
With this in mind, it's even more important to set good goals - realistic goals that lead to success. We might not succeed every time, but the more we do, the more positive we feel about our ability to achieve things.
I use the SMART system when I set goals for myself. This is an acronym that stands for:
- Specific
- Measurable
- Achievable
- Realistic
- Timely
It's important that goals should be specific and measurable - how else can you know if you've succeeded? It's not enough to say "I want to lose weight" - you need to set a measurable figure on your weight loss. This has to be a realistic number. If you're on high-dose steroids, for example, which have weight gain and increased appetite as a common side-effect, you may need to allow yourself more time to achieve your goal, or to set a smaller initial target.
Give yourself a time limit so that you know when to stop and check how much progress you've made. You may need to have more than one target - a long-term target and a short-term target. Aiming to lose 2 lb (1 kg) in a month sounds more manageable than aiming to lose 22 lb (10 kg).
Once I've set my goal, I think about the changes that I need to make in order to achieve my goal. Sticking with the example of losing weight, I might decide to drink water instead of fruit juice, and to eat fresh fruit instead of chocolate. I try not to make changes that I know will make me miserable. If you need chocolate or a glass of wine to get through the week, cutting those out will make you miserable and less likely to succeed. Don't forget to be realistic and honest with yourself. Cutting out chocolate or alcohol on one day a week is a good start!
There might be more than one way to get to your goal, e.g. doing more exercise and eating fewer calories are both ways to lose weight. People get very hung up on exercise (those who genuinely love going to the gym are the exception in my experience), but you don't have to spend an hour on the treadmill. Getting off the bus a couple of stops earlier, taking the stairs instead of the lift, or signing up to a dance class are all ways of fitting more exercise into your everyday routine. A pedometer is a good way of keeping track of how much walking you're doing.
Having set your goal and decided on the changes that you're going to make, decide on a reward for yourself once you've achieved this goal. This could be a small reward (e.g. a magazine, book, flowers or a bubble bath) for short-term achievements and a big reward (e.g. a massage, a new haircut, a new bottle of scent) for bigger achievements.
If you don't achieve your goal in the time you allowed yourself, don't beat yourself up about it. Consider why you didn't succeed and modify your next goal to be more realistic. You may need to make different changes.
Above all, be proud of yourself. Celebrate every success, no matter how small.
As L'Oreal would say, "You're worth it".
Tuesday 21 February 2012
Pacing
Spot the mistake in this scenario:
I have a rare good day and take the opportunity to do all the jobs that I have been wanting to do while I've been stuck in bed or on the sofa. This causes pain and fatigue, along with other unwanted symptoms, and I end up back in bed, or even in hospital. While I'm laid-up, I spend my time thinking of all the things that I want to do when I'm 'better' and then push myself past my limits at the first opportunity.
Sound familiar?
I think that many of us with chronic illnesses push our bodies to the limit. This may be a result of frustration at spending so much time unable to do ordinary (or fun!) things, guilt that we can't keep up with friends, the children, the housework, or our jobs, or excitement that we feel well enough to do things. It seems utterly counterintuitive to me to restrict my activities when I feel good as well as when I'm physically unable to do anything.
This is where the theory of pacing comes in. The idea is to break the cycle described above by carefully restricting activities on good days to avoid the 'crash' days. It's hard, but the incentive is there - imagine not having those crash days, or having them only rarely. It wouldn't matter that I didn't get everything done in a single day (or single afternoon) if I knew that there was a reasonable chance that I would be able to function the next day or even the day after.
One way to start is to think about what you can manage on a moderately bad day. Keeping a symptom diary can be helpful for this. If you know how much you can lift, walk, drive or eat on an average/bad day then you can use this as your baseline. Try to restrict yourself to this initially, gradually building up the level of activity according to how much you can tolerate. Remember that mental activity can also be draining - it's not just the physical tasks that take their toll.
Things that can help:
I have to confess that I'm bad at this. I'm stubborn and I'm proud. I don't like to admit that my body is failing me, but I know that my husband would rather we were able to go out to see a film or to hang out with friends than know that I had done all the housework by myself.
Hiring a cleaner isn't the only way to delegate tasks. Ordering groceries online and getting them delivered has given me back two or even three days each week. Good things to delegate are things that you don't particularly enjoy, that don't benefit from your personal input, or that cause you more symptoms. I'm not suggesting that you absolve yourself of all responsibility and spend your time watching Jeremy Kyle; far from it. People with chronic illness need activity to avoid deconditioning - doing a lot of nothing will reduce your exercise tolerance and may adversely affect conditions such as autonomic dysfunction.
So what do you do?
I have a rare good day and take the opportunity to do all the jobs that I have been wanting to do while I've been stuck in bed or on the sofa. This causes pain and fatigue, along with other unwanted symptoms, and I end up back in bed, or even in hospital. While I'm laid-up, I spend my time thinking of all the things that I want to do when I'm 'better' and then push myself past my limits at the first opportunity.
Sound familiar?
I think that many of us with chronic illnesses push our bodies to the limit. This may be a result of frustration at spending so much time unable to do ordinary (or fun!) things, guilt that we can't keep up with friends, the children, the housework, or our jobs, or excitement that we feel well enough to do things. It seems utterly counterintuitive to me to restrict my activities when I feel good as well as when I'm physically unable to do anything.
This is where the theory of pacing comes in. The idea is to break the cycle described above by carefully restricting activities on good days to avoid the 'crash' days. It's hard, but the incentive is there - imagine not having those crash days, or having them only rarely. It wouldn't matter that I didn't get everything done in a single day (or single afternoon) if I knew that there was a reasonable chance that I would be able to function the next day or even the day after.
One way to start is to think about what you can manage on a moderately bad day. Keeping a symptom diary can be helpful for this. If you know how much you can lift, walk, drive or eat on an average/bad day then you can use this as your baseline. Try to restrict yourself to this initially, gradually building up the level of activity according to how much you can tolerate. Remember that mental activity can also be draining - it's not just the physical tasks that take their toll.
Things that can help:
- Taking regular breaks
- Taking regular painkillers or other medications
- Short periods of activity
- Switching between activities (this avoids strain from repeating one thing for too long)
- Prioritising your tasks
- Delegating to others
- Planning to do things at 'good' times of day
I have to confess that I'm bad at this. I'm stubborn and I'm proud. I don't like to admit that my body is failing me, but I know that my husband would rather we were able to go out to see a film or to hang out with friends than know that I had done all the housework by myself.
Hiring a cleaner isn't the only way to delegate tasks. Ordering groceries online and getting them delivered has given me back two or even three days each week. Good things to delegate are things that you don't particularly enjoy, that don't benefit from your personal input, or that cause you more symptoms. I'm not suggesting that you absolve yourself of all responsibility and spend your time watching Jeremy Kyle; far from it. People with chronic illness need activity to avoid deconditioning - doing a lot of nothing will reduce your exercise tolerance and may adversely affect conditions such as autonomic dysfunction.
So what do you do?
- Try to keep yourself looking nice: wash your hair if you can (if not, dry shampoo is pretty good) and use scent and a little bit of make-up if they make you feel good. Get your hair cut into a more manageable style if necessary
- Find a wardrobe that works for you. Suits and high heels are great, but loose tops and trousers may be more appropriate if you're not working. Please don't sit around all day in the same pyjamas that you slept in. If nothing else, freshen up and change the PJs
- Try to have at least one thing every day that you feel pleased to have done. It might be a yoga class, craft, writing, speaking to a friend on the telephone or doing the washing up
- Stay in touch with friends and family. They probably won't understand the extent of your illness - few people do, but they're still part of your life story, and they probably care about you more than you realise
- Try to make contact with people who do understand
- Stay as active as you can, working from your baseline
- Eat good food at mealtimes. Try to make meals an event, even if you're alone or struggle with eating. Eating straight out of the packet while lying on the sofa is depressing for anyone.
- Get outside as often as possible, even if it's just for a cup of tea in the garden (perhaps not in this weather) or a walk to a local bookshop
- Don't give up entirely on work - if you can continue your job (even if you need help with rest breaks or flexible hours) that's great. Otherwise, see if there's anything else you can do - part-time, voluntary, self-motivated.
Friday 17 February 2012
Grief
Denial
Anger
Bargaining
Depression
Acceptance
Elizabeth Kubler-Ross' five stages of grieving, from her book 'On Death and Dying'. Originally, these five stages were applied to those with terminal illness, or those grieving the loss of a loved one. I think that they can also be applied to those of us with chronic illnesses, whether life-limiting or not.
I am 30 years old, soon to be 31. I have been ill for longer than I can remember. Over the years, I have suffered losses as a result of my illness: my hearing; my ability to run, and then to walk; the career that I always thought was my destiny; friends; independence. I could go on, but I'm sure you get the idea.
These little losses can build up until life seems utterly hopeless. Grieving for these losses can cause losses too. I mourned my joie de vivre as much as the loss of my long-awaited career. Thankfully, my love for life returned, and I found other interests to occupy my time. This, I suppose, is acceptance.
If I were to reshape the stages of grief, I would make them into the shape of a spider web. Not only because there's a large spider on the other side of the room, but because I have so often bounced from one to the other in no apparent order. Having reached the glorious state of acceptance, I sometimes find myself ricocheting into anger, denial, depression, bargaining and back, all within the space of a few days. Sometimes even within the space of a few hours.
Acceptance for me has been about valuing the things that I can still do. When that has seemed next to nothing, I have tried to take up new hobbies. I re-learnt to knit when I was housebound for six months, and this has proved immensely satisfying. Not only does it occupy many lonely hours, but I have something beautiful to show at the end of it. Something that I have made, without walking, without lifting, despite pain. I am reaching a point where I can't knit for long without dislocating my fingers and wrists, but feel peaceful about this. I have been here before, and I will still be me, despite everything that my body throws at me.
Acceptance has also been about defining myself according to who I am, rather than what I do. I am no longer a medic, a scientist or an investment banker; no longer a GB waterskier, a swimmer or a wheelchair-skills tutor. On good days I can still be sociable, bake, read and knit. On bad days I sleep, vomit, nebulise and take medications. Despite all of this, I am still me. I am kind, enthusiastic, deeply interested in the world around me, hopeful, optimistic, grateful, generous, and sarcastic.This 'me' may live in a decrepit and failing body, but it is little different for that. I look after this body as best I can and hope that it will continue to support me for many years to come.
Despite the state of my body, I am glad to be alive.
Anger
Bargaining
Depression
Acceptance
Elizabeth Kubler-Ross' five stages of grieving, from her book 'On Death and Dying'. Originally, these five stages were applied to those with terminal illness, or those grieving the loss of a loved one. I think that they can also be applied to those of us with chronic illnesses, whether life-limiting or not.
I am 30 years old, soon to be 31. I have been ill for longer than I can remember. Over the years, I have suffered losses as a result of my illness: my hearing; my ability to run, and then to walk; the career that I always thought was my destiny; friends; independence. I could go on, but I'm sure you get the idea.
These little losses can build up until life seems utterly hopeless. Grieving for these losses can cause losses too. I mourned my joie de vivre as much as the loss of my long-awaited career. Thankfully, my love for life returned, and I found other interests to occupy my time. This, I suppose, is acceptance.
If I were to reshape the stages of grief, I would make them into the shape of a spider web. Not only because there's a large spider on the other side of the room, but because I have so often bounced from one to the other in no apparent order. Having reached the glorious state of acceptance, I sometimes find myself ricocheting into anger, denial, depression, bargaining and back, all within the space of a few days. Sometimes even within the space of a few hours.
Acceptance for me has been about valuing the things that I can still do. When that has seemed next to nothing, I have tried to take up new hobbies. I re-learnt to knit when I was housebound for six months, and this has proved immensely satisfying. Not only does it occupy many lonely hours, but I have something beautiful to show at the end of it. Something that I have made, without walking, without lifting, despite pain. I am reaching a point where I can't knit for long without dislocating my fingers and wrists, but feel peaceful about this. I have been here before, and I will still be me, despite everything that my body throws at me.
Acceptance has also been about defining myself according to who I am, rather than what I do. I am no longer a medic, a scientist or an investment banker; no longer a GB waterskier, a swimmer or a wheelchair-skills tutor. On good days I can still be sociable, bake, read and knit. On bad days I sleep, vomit, nebulise and take medications. Despite all of this, I am still me. I am kind, enthusiastic, deeply interested in the world around me, hopeful, optimistic, grateful, generous, and sarcastic.This 'me' may live in a decrepit and failing body, but it is little different for that. I look after this body as best I can and hope that it will continue to support me for many years to come.
Despite the state of my body, I am glad to be alive.
Thursday 16 February 2012
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:
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):
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!
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:
- 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.
- 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!
- 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.
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
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!
Monday 6 February 2012
When Even Liquids are a Struggle: Some Advice
Gastroparesis is a condition in which the muscles or nerves of the stomach don't work correctly so the stomach isn't able to empty effectively. Food stays in the stomach for hours longer than it should, causing nausea, bloating, fullness and pain, as well as vomiting.
Because the stomach doesn't empty properly, eating and drinking can be a battle to fight through all the symptoms. Failure to eat or drink enough can cause severe malnutrition and/or dehydration.
One of the easiest things to do when gastroparesis symptoms are severe is to stick to a liquid diet. Liquids empty from the stomach by gravity, so in theory they should cause fewer symptoms than solids. However, even liquids can cause symptoms, so here are a few tips as to how you can maximise nutrition when even liquids are a struggle.
Website: livingwithgastroparesis.com
Books: Living (well!) with Gastroparesis
Eating for Gastroparesis: Guidelines, Tips & Recipes
I'd love to hear from you about any other websites or books that you recommend, or any tips that you find helpful when eating and drinking are a struggle.
Because the stomach doesn't empty properly, eating and drinking can be a battle to fight through all the symptoms. Failure to eat or drink enough can cause severe malnutrition and/or dehydration.
One of the easiest things to do when gastroparesis symptoms are severe is to stick to a liquid diet. Liquids empty from the stomach by gravity, so in theory they should cause fewer symptoms than solids. However, even liquids can cause symptoms, so here are a few tips as to how you can maximise nutrition when even liquids are a struggle.
- Maximise your nutrition and hydration - make every morsel count. Now is not the time for diet drinks.
- Take care of your teeth - chew sugar-free gum to hydrate your mouth and don't brush your teeth within 20 minutes of vomiting. Yes, this feels disgusting, but the acid in vomit softens the tooth enamel, and if you brush too soon, you'll remove precious enamel from your teeth. Rinse your mouth with water immediately, and then brush later.
- Take your anti-emetics (anti-sickness drinks) on a regular schedule. If you can keep the nausea and vomiting at bay, you have a better chance of staying hydrated
- If swallowing is a problem, or if you don't absorb tablets/capsules well, speak to your GP or pharmacist about alternative preparations. Many anti-sickness medications are available as tablets that dissolve in the mouth, or even as a patch that can be stuck on the skin. Other medications may be available as liquids or soluble tablets (or other forms), and capsules can sometimes be opened and the tiny beads inside can be swallowed with a spoon of yoghurt or apple sauce.
- Get help for pain, whether it is in your mouth, throat, stomach, or somewhere else. Bonjela (a gel for teething pain or mouth ulcers) is available over the counter. Don't be afraid to speak to your GP or pharmacist about pain, especially if it's stopping you from eating or drinking.
- Painkillers are better at keeping pain at bay than they are at getting pain under control once it's really established itself. If you've been prescribed painkillers to take regularly, do take them regularly.
- If you've been prescribed NSAIDs (e.g. Aspirin, Ibuprofen, Naproxen, Diclofenac) and find that they are upsetting your stomach, ask your GP or pharmacist if they can recommend an alternative, or if they really are the best medications for you, to prescribe other medication to protect your stomach while you're taking the NSAIDs.
- Be careful of low blood sugars (hypoglycaemia). Symptoms of hypoglycaemia include anxiety, nausea, sweating, hunger, shakiness and weakness. If you find it difficult to spot the symptoms of low blood sugars before they get so low that you collapse in a heap, ask your GP about monitoring your own blood sugars at home, and make sure you get instructions about when you should check your sugars, how low is too low, and what you should do in this situation.
- Taking a supplement of multivitamins/minerals can minimise some of the anxiety associated with not being able to eat. If you know that your micronutrient needs are being met, you can focus on getting hydration and calories. I recommend trying to find supplements in liquid or chewable form, as these are often better tolerated than capsules or tablets. Those designed for children can be more palatable. If you can't tolerate the whole dose, or can't tolerate it every day, don't give up. A little is better than nothing!
- Water is great, but if you're barely managing liquids, your body may need more than just water - try clear liquids, e.g. apple juice, cranberry juice, bouillon, sugary cordials. It's also possible to buy fortified juices, such as Fortijuice, which are clear liquids, but are fortified with extra nutrients and calories.
- Dioralyte (or another rehydration solution) is brilliant if you can tolerate it, as it contains electrolytes and sugars to help replenish what you're losing, especially if you're vomiting or if you have diarrhoea.
- Try setting a timer - every 15 minutes drink a teaspoon full of liquid. This seems like a tiny amount, but if you can tolerate it, you'll be getting 20 ml per hour, or 100 ml every five hours. It all adds up. If you can manage that, try increasing the frequency to every 10 minutes, or the volume to 2 tsp (10 ml).
- Carry a bottle of juice around with you and take a sip every time you remember.
- Using a straw can make it easier to drink quantities, especially if you have a sore mouth.
- Very plain salty crackers, e.g. saltines or water biscuits can help settle the stomach
- Ice lollies (popsicles) are a great way to get those valuable liquids. They are available in minature forms for children, but if even these are too large, try making ice cubes from fruit juice or cordials.
- Ginger is renowned for its anti-nausea properties. A delicious tea can be made from grated ginger, honey and hot water. Strain before drinking.
- Boiled sweets (hard candy) are a good source of sugar. If you can suck these in addition to your liquid diet, they provide calories, flavour and a bit of variety from an entirely liquid diet.
- Get yourself some dextrose tablets to have on hand in case of low blood sugars - you can suck them or rub them against your gums. If you prefer, you can get sugary gel from your pharmacist that has the same effect (try Hypofit or Dextrogel).
Website: livingwithgastroparesis.com
Books: Living (well!) with Gastroparesis
Eating for Gastroparesis: Guidelines, Tips & Recipes
I'd love to hear from you about any other websites or books that you recommend, or any tips that you find helpful when eating and drinking are a struggle.
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.
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