August is often jokily known as Killing Season.
Newly-qualified doctors almost all hit the wards on the first Wednesday of August. Most of the other grades of junior doctors also start new jobs at this time. While this makes the logistics of medical staffing simpler, it can be a scary time for patients, especially those with rare/complex conditions.
I'm absolutely not trying to knock junior doctors. They have all made it through medical school, through written finals and clinical finals. They are generally bright, interesting, personable and sensible. They work long hours in a demanding job, often with little support or appreciation.
Medical textbooks are often very thick - there are an awful lot of different conditions out there, and there is no way that even the best junior doctor can know everything about every condition. I'm surprised if my condition gets more than a fleeting mention (if that!) in most textbooks. I certainly don't expect very junior doctors to know about my condition, understand how it affects me day-to-day, or make long-term treatment plant. That's why I have specialists (lots and lots of them)!
Even if your new doctor has memorised the textbook from cover to cover, chances are that they've never actually met someone with your rare condition. They probably don't know many of their colleagues (or how to get favours to jump the queue for scans, other tests, or specialist review), may not be familiar with the computer system, prescribing system, or test-ordering system. They may not even know their way around the hospital.
Last year, during Killing Season, I met a newly-qualified doctor at my local hospital (a large London teaching hospital and major trauma centre). He had been called to see me because my peripheral IV line had blown (again). My veins are notoriously rubbish, but I really needed the access to be able get a medication that was only just keeping me out of Intensive Care. This doctor looked carefully for a vein, and couldn't find one. I told him that I was happy for him to have three attempts, but after that I would like him to ask someone else to try. He said to me, "There isn't even anywhere to try". Fair enough. He's not the only person to have said that. But what he did next scared me. He packed up his cannulating supplies, and walked off, telling me over his shoulder that he didn't think I needed IV access after all. Needless to say, I deteriorated, and ended up in Intensive Care.
It's entirely possible that I would have ended up in ICU anyway, but the experience frightened me.
So, a few tips for people like me on surviving the Killing Season:
1. Do everything possible to avoid an emergency admission at this time of year
Avoidance is the best possible technique - give the new doctors a chance to settle in and get confident. Even if these techniques only delay the inevitable, buying time in this situation is a Good Thing.
- Talk to your specialists in advance, and ensure that you have an emergency treatment plan
- Check your medications and make sure you have supplies of emergency medications (check the expiry date!)
- Make an appointment with your GP for the start of August. If you don't need it when the time comes, you can cancel it, but it will save you having to go to A&E if you have a flare-up and can't get an appointment to see your own doctor
2. Be prepared
- Make a list of all your medications, including generic name, dose, frequency, route, and the reason you take each medication
- Make a list of all your specialists and their contact details
- Write an executive summary of your medical history. This is a quick 'basic guide' to your conditions. Include your diagnoses (with a short explanation of how you're affected), any major hospitalisations, procedures or surgeries, and any relevant family or social history
- Get a printout of blood test results from when you're stable. If there are particular things that change when you're unwell, also get a printout from a time when you were unwell
3. Be kind to the new doctors
- Don't be sarcastic or aggressive if they ask questions that you think are silly - be grateful that they're asking questions, and use this as an opportunity to educate them about your condition
- Don't be upset or angry if the new doctor is patronising. They don't know your background, and will often aim for the lowest common denominator. Yes, it can be frustrating to have doctors talk about 'a little tube' or 'the tablet for your waterworks', but be patient - they'll learn as they get to know you
- If you want direct answers, ask direct questions - if you like to know specific blood results, ask
- This doctor could be your best advocate while you're inpatient - they're on the wards most of the time, are the ones that see all your blood results (and other test results), will write your discharge paperwork, and will perform most basic procedures (and request the more specialised ones). If they're on your side, you'll have a much easier time
- Don't expect the new doctor to spot it when things are deteriorating or improving. This is not a test, and there are no points for detecting 'hidden' symptoms and signs. If you notice something, tell your doctors. If you know how it's been treated in the past, or what it means, discuss this openly with the doctors
- Make a plan and agree it with the team (including your specialist) so that the most junior new doctors are not expected to make decisions about long-term care or discharge. Agree specifics, e.g. a peak flow of 75% before discharge and nebulisers not used more frequently than four-hourly, being on 'home medications' for 24 hours before being allowed home, or being able to walk a certain distance without severe pain
4. Don't panic
- If the new doctors are not picking up the hints that you are a well-informed patient with a complex condition and long medical history, and don't seem prepared to treat you as a member of the team, don't give up - talk to other members of the team, or other medical professionals (e.g. dieticians, nurse practitioners), and see if they can lead by example, by involving you in decisions and talking to you on a level
- If the new doctor is unwilling to prescribe strong painkillers or other potentially addictive medications, be understanding - not everyone takes these medications legitimately. Ask for a review by one of their seniors, or by the pain team (especially if they know you and your medical history)
- If all else fails, bite your tongue and grit your teeth when the new doctor is around. Not all doctors are cut-out for dealing with complex patients. Make only as much fuss as you need to be safe while you're in hospital, remembering that the problem doctor will probably move on to the next job in 3-4 months
Above all, be understanding. Your doctor may not have had a lunchbreak or toilet break; they might have been due to go home over an hour ago; they might have just been to an unsuccessful and upsetting crash call. They may be exhausted, overwhelmed, in a new city, far from friends and family, and under pressure from all sides.
Be prepared for things to take a little longer than usual, don't expect the newly-qualified doctor to make big decisions (like allowing you to go home, unless already agreed with the consultant), don't embarrass the new doctor in front of the consultant (no matter how tempting), and don't be rude or uncooperative. If you can educate the new doctor about your condition and treatment plan, they may turn out to be a valuable member of your team.
Good luck!
Wednesday, 25 July 2012
Sunday, 22 July 2012
Hospitals are for the Healthy
As I write this, I am an inpatient on an Acute Medical Admissions Ward. This is a ward designed to take people straight from the Accident & Emergency department and care for them until they are well enough to go home, or until they move on to another, more specialised, ward. There are several teams of doctors that care for the patients on this ward, all led by Consultants who specialise in Acute Medicine.
I can't help feeling that this set-up isn't a very good 'fit' for me.
Depending on how specific you want to be, I have at least six conditions listed in the 'diagnosis' section of my patient record, none of which are 'acute'. Sometimes I have an acute flare-up of, say, asthma, for which I could legitimately be admitted to this ward. However, the acute flare will always be on a background of chronic 'difficult' asthma, which is a poorly understood condition, even among respiratory specialists.
Unfortunately, admitting me for an acute flare-up of asthma is not as simple as admitting someone who is otherwise well. My other conditions still have to be treated and monitored, and sometimes the treatment for the asthma must be modified because of my other conditions and vice versa. This is not always as straightforward as it sounds, and often requires input from multiple specialists.
Usually I am transferred quickly from this admissions ward to a more specialist (respiratory or gastro) ward, where I am much more at ease, but for some reason that hasn't happened this time. Which may be because I have an infection, and that was seen (in isolation from my other complex conditions) as a simple, acute problem.
Which it isn't.
Anyway, I digress. My point was really just that so much of medicine is geared towards admitting people with acute conditions, restoring them quickly to their previously healthy state, and allowing them to go home. Those who don't fit this simplistic mould must be elderly, and therefore can be transferred to the Elderly Care service.
The paediatricians are used to seeing children with complex medical needs, and paediatric units are often shining beacons of multidisciplinary care, but somehow this fizzles out as the patients get older. I know that there are other young-ish adults out there with chronic/rare/complex conditions. I read their blogs and follow them on Twitter, but I don't see them in hospitals, and I don't see a system that is designed to care for them.
I see a system designed for people who can walk down long corridors for miles and miles, don't require a special or complex diet (vegetarian is probably manageable, but low-FODMAPs or a ketogenic diet - you must be joking!), don't need snacks outside set mealtimes, need minimal help to dress, feed themselves or transfer, can wash independently (in a shower cubicle without a seat), don't have severe allergies to air-fresheners/cleaning products, can hear their name called from behind a screen in a busy clinic, can remember the names and dosages of their medications... I'm sure you can think of so many more examples.
Hospitals are designed for healthy people, and I say we need a rethink.
I can't help feeling that this set-up isn't a very good 'fit' for me.
Depending on how specific you want to be, I have at least six conditions listed in the 'diagnosis' section of my patient record, none of which are 'acute'. Sometimes I have an acute flare-up of, say, asthma, for which I could legitimately be admitted to this ward. However, the acute flare will always be on a background of chronic 'difficult' asthma, which is a poorly understood condition, even among respiratory specialists.
Unfortunately, admitting me for an acute flare-up of asthma is not as simple as admitting someone who is otherwise well. My other conditions still have to be treated and monitored, and sometimes the treatment for the asthma must be modified because of my other conditions and vice versa. This is not always as straightforward as it sounds, and often requires input from multiple specialists.
Usually I am transferred quickly from this admissions ward to a more specialist (respiratory or gastro) ward, where I am much more at ease, but for some reason that hasn't happened this time. Which may be because I have an infection, and that was seen (in isolation from my other complex conditions) as a simple, acute problem.
Which it isn't.
Anyway, I digress. My point was really just that so much of medicine is geared towards admitting people with acute conditions, restoring them quickly to their previously healthy state, and allowing them to go home. Those who don't fit this simplistic mould must be elderly, and therefore can be transferred to the Elderly Care service.
The paediatricians are used to seeing children with complex medical needs, and paediatric units are often shining beacons of multidisciplinary care, but somehow this fizzles out as the patients get older. I know that there are other young-ish adults out there with chronic/rare/complex conditions. I read their blogs and follow them on Twitter, but I don't see them in hospitals, and I don't see a system that is designed to care for them.
I see a system designed for people who can walk down long corridors for miles and miles, don't require a special or complex diet (vegetarian is probably manageable, but low-FODMAPs or a ketogenic diet - you must be joking!), don't need snacks outside set mealtimes, need minimal help to dress, feed themselves or transfer, can wash independently (in a shower cubicle without a seat), don't have severe allergies to air-fresheners/cleaning products, can hear their name called from behind a screen in a busy clinic, can remember the names and dosages of their medications... I'm sure you can think of so many more examples.
Hospitals are designed for healthy people, and I say we need a rethink.
Monday, 9 July 2012
Each Day at a Time
I feel embarrassed when people say that they find me inspirational, or that they admire my courage. I don't feel as though I deserve this sort of praise, and I certainly don't feel brave, or even anything out of the ordinary.
Having said that, I'm thrilled to be able to reach out to people in a similar situation (or not), and have made some great friends through this interweb malarky.
When I see my own story in print, reading back through this blog, through my medical folder, or speaking to friends and family about some of the events of the past, it does seem almost too much to bear. Certainly, taken all at once, it sounds impossible that anyone could go through these things and come out the other side, relatively unscathed.
What this doesn't include is the many good days that I have that make the difficult stuff fade into the background. I have been out of hospital for over four weeks now (not including the three A&E visits when we were trying to work out if my line was infected, or if I was allergic to one of my IV medications). It's not that I forget the bad things - after all, I have scars, tubes and a house full of medical kit to remind me, but there are so many things that balance out the bad things.
Each of us assigns 'weight' to the things that happen in our lives. I try to assign as little weight as possible to hospital admissions, procedures, surgery, and other things that are Not Fun, and assign much greater weight to the Good Things in life.
Of course there are times when I am absolutely overwhelmed by the things that are Not Fun. So much so that life can feel a bit miserable. But these days pass. They may feel long and impossibly hard, but they pass.
And the Good Things? These may be things that many of you wouldn't notice, and that certainly wouldn't brighten your day, but I need these things - to notice them and register them as important in my memory so that the balance of events in my life tilts towards the positive.
I wouldn't describe myself as a natural optimist (Optimists live longer than pessimists - "Serves them right" say the pessimists), but I don't want to waste this life by focusing on the negatives. There are enough bad things without making them worse by dwelling on them!
If someone read back all the difficult things that I have been through in the last couple of years, I would agree that I would need a huge amount of courage to get through such ordeals. The reality is that I don't go through it all in one go. I have time to catch my breath, gather my thoughts, and have some fun before heading back unto the breach (dear friends). I suppose it's a form of denial or dissociation. I push the difficult things to the back of my mind, focus on the happy times and good people, and get on with life - one moment at a time.
Remember this when life seems too much to bear. Each of us has our own burdens to carry, but focus on the happy moments: strawberries warm from the sun, the weight of a sleeping cat and the warmth of her contented dribble, a favourite song on the radio, the smell of cake fresh from the oven. Individually they may seem small in comparison to everything that's wrong with the world, but as I practise more and more, I find that they matter more and life seems better as a result.
Having said that, I'm thrilled to be able to reach out to people in a similar situation (or not), and have made some great friends through this interweb malarky.
When I see my own story in print, reading back through this blog, through my medical folder, or speaking to friends and family about some of the events of the past, it does seem almost too much to bear. Certainly, taken all at once, it sounds impossible that anyone could go through these things and come out the other side, relatively unscathed.
What this doesn't include is the many good days that I have that make the difficult stuff fade into the background. I have been out of hospital for over four weeks now (not including the three A&E visits when we were trying to work out if my line was infected, or if I was allergic to one of my IV medications). It's not that I forget the bad things - after all, I have scars, tubes and a house full of medical kit to remind me, but there are so many things that balance out the bad things.
Each of us assigns 'weight' to the things that happen in our lives. I try to assign as little weight as possible to hospital admissions, procedures, surgery, and other things that are Not Fun, and assign much greater weight to the Good Things in life.
Of course there are times when I am absolutely overwhelmed by the things that are Not Fun. So much so that life can feel a bit miserable. But these days pass. They may feel long and impossibly hard, but they pass.
And the Good Things? These may be things that many of you wouldn't notice, and that certainly wouldn't brighten your day, but I need these things - to notice them and register them as important in my memory so that the balance of events in my life tilts towards the positive.
I wouldn't describe myself as a natural optimist (Optimists live longer than pessimists - "Serves them right" say the pessimists), but I don't want to waste this life by focusing on the negatives. There are enough bad things without making them worse by dwelling on them!
If someone read back all the difficult things that I have been through in the last couple of years, I would agree that I would need a huge amount of courage to get through such ordeals. The reality is that I don't go through it all in one go. I have time to catch my breath, gather my thoughts, and have some fun before heading back unto the breach (dear friends). I suppose it's a form of denial or dissociation. I push the difficult things to the back of my mind, focus on the happy times and good people, and get on with life - one moment at a time.
Remember this when life seems too much to bear. Each of us has our own burdens to carry, but focus on the happy moments: strawberries warm from the sun, the weight of a sleeping cat and the warmth of her contented dribble, a favourite song on the radio, the smell of cake fresh from the oven. Individually they may seem small in comparison to everything that's wrong with the world, but as I practise more and more, I find that they matter more and life seems better as a result.
Friday, 22 June 2012
The Pain Olympics
I've written about this before, so forgive me if you're bored of reading about it, but it's been on my mind. And hey, it's topical (35 days to go until the real olympics). Apologies if you're heartily sick of the olympics. Obviously, this isn't really about sport, so read on.
What I mean by the 'pain olympics' is the competitiveness that I've occasionally witnessed from other people with chronic illnesses or disabilities, as though there's a gold medal for the 'most disabled'. The conversation might go something like this:
Person 1: I am paraplegic (paralysed from the waist down). This is the worst thing that has ever happened to me.
Person 2: I am tetraplegic (paralysed from the shoulders down). You're hardly paralysed. Call that an injury? It's just a slap on the arse. Get yourself a band-aid and a cup of tea and you'll be fine.
With some paraphrasing, this is a conversation that I have heard many times in real life.
I have to admit that it's tempting to squash the complainers. The people who have a cold and whine for a week. A broken toe? A cut that needed *gasp* two stitches? There are times when I want to tell them to look around and try to gain some perspective; to tell them that they have no idea what 'serious' pain is like.
But I don't.
Why?
Because where do you draw the line?
What counts as serious and 'worthy' of sympathy? There will always be someone in a worse position - more paralysed, in more pain, more limited by their disability, in hospital for longer, requiring more care or more surgical intervention. There will always be someone younger, more courageous, more inspirational; achieving more against the odds.
Complainers, we love you and want to be supportive, but think carefully about what you're saying, and who's on the receiving end of your whining. Telling someone with digestive tract paralysis who is totally unable to eat about the awful morning sickness that is putting you off your organic muesli may not earn you much sympathy.
Sick people, try not to be too judgemental. Imagine how much we could achieve if we supported each other instead of thinking up new and original cutting remarks to put people in their place if they dare to complain about something as minor as, say, childbirth.
For me, the progression of this illness is the worst thing (or one of the worst things) I've ever experienced. I know that there are people in a worse position than me, and I can't imagine how strong they must have to be to get through each day. I rely on these people to inspire me to find the inner strength that I need to seek out the joy in life when it seems impossibly hard. I am so grateful that they don't belittle my experience, though it's nothing in comparison to what some of them are living through on a daily basis.
There is no gold medal for having the most serious illness. The only achievements in life are those we earn, despite our circumstances, not because of them.
What I mean by the 'pain olympics' is the competitiveness that I've occasionally witnessed from other people with chronic illnesses or disabilities, as though there's a gold medal for the 'most disabled'. The conversation might go something like this:
Person 1: I am paraplegic (paralysed from the waist down). This is the worst thing that has ever happened to me.
Person 2: I am tetraplegic (paralysed from the shoulders down). You're hardly paralysed. Call that an injury? It's just a slap on the arse. Get yourself a band-aid and a cup of tea and you'll be fine.
With some paraphrasing, this is a conversation that I have heard many times in real life.
I have to admit that it's tempting to squash the complainers. The people who have a cold and whine for a week. A broken toe? A cut that needed *gasp* two stitches? There are times when I want to tell them to look around and try to gain some perspective; to tell them that they have no idea what 'serious' pain is like.
But I don't.
Why?
Because where do you draw the line?
What counts as serious and 'worthy' of sympathy? There will always be someone in a worse position - more paralysed, in more pain, more limited by their disability, in hospital for longer, requiring more care or more surgical intervention. There will always be someone younger, more courageous, more inspirational; achieving more against the odds.
Complainers, we love you and want to be supportive, but think carefully about what you're saying, and who's on the receiving end of your whining. Telling someone with digestive tract paralysis who is totally unable to eat about the awful morning sickness that is putting you off your organic muesli may not earn you much sympathy.
Sick people, try not to be too judgemental. Imagine how much we could achieve if we supported each other instead of thinking up new and original cutting remarks to put people in their place if they dare to complain about something as minor as, say, childbirth.
For me, the progression of this illness is the worst thing (or one of the worst things) I've ever experienced. I know that there are people in a worse position than me, and I can't imagine how strong they must have to be to get through each day. I rely on these people to inspire me to find the inner strength that I need to seek out the joy in life when it seems impossibly hard. I am so grateful that they don't belittle my experience, though it's nothing in comparison to what some of them are living through on a daily basis.
There is no gold medal for having the most serious illness. The only achievements in life are those we earn, despite our circumstances, not because of them.
Thursday, 14 June 2012
Life-Limiting Illness
One of the things that has really hit home over the last few months, as I've spent so much time in hospital, is that my illness is progressing. I have known for a long time that I probably wouldn't live to be 100 to receive a telegram from the Queen (or perhaps King, by then!), but with each new problem, it seems increasingly likely that I may be lucky to make it to 50.
I've lived with severe 'brittle' asthma for almost all my life. I also have severe allergies. Either of those could kill me. While thatt makes it a bit scary when I have an asthma attack or anaphylactic reaction, most of the time I can forget about those and put the thoughts of death to the back of my mind.
More recently, as my GI tract has shut down, my autonomic dysfunction has become more pronounced and my blood sugars have become more difficult to control, I have needed more day-to-day medical support.just to remain stable. I have a jejunostomy tube for medications and low-volume feeding, and a Hickman line (permanent IV line) for medications and IV fluids. My team are gearing up to start me on parenteral (IV) nutrition, which carries with it many risks. Risks of bloodstream infection (septicaemia), liver damage and blood clots, to name just a few. I know that these risks are small in comparison to the guaranteed complications of starvation and malnutrition, but they are still significant.
I can accept the restrictions that my illness has placed on my life. I am still so grateful to be alive, and to have the opportunity to experience this wonderful world. But I don't feel ready to die. Not now, and not in five or ten years. Probably not even in 20 years. There are still so many things that I want to experience. I want to grow old with my husband. I want to see our friends' children grow up, and to have nieces, nephews and godchildren, and to be there for them. I don't want to miss the conversations, the celebrations; even the bad times. I want to be there to comfort my husband, friends and family; to grieve with them in the sad times and rejoice with them in the good.
I am not afraid of death. I just don't feel ready to stop living.
My husband and I are very open with each other about this. We both know that I have a life-limiting illness, and we live accordingly. We seize our opportunities when they arise - who knows what might be impossible for me by next year or the year after? We talk about funeral plans and end-of-life decisions for both of us. We discuss the things that are important to us about medical care, our thoughts on remarriage, what we want to happen to our bodies after death, and how we want to be remembered.
During one of these conversations, I asked my husband how he copes with the thought that I will die before I'm old. His response?
"I will love you for as long as I have you. And then a bit longer."
I've lived with severe 'brittle' asthma for almost all my life. I also have severe allergies. Either of those could kill me. While thatt makes it a bit scary when I have an asthma attack or anaphylactic reaction, most of the time I can forget about those and put the thoughts of death to the back of my mind.
More recently, as my GI tract has shut down, my autonomic dysfunction has become more pronounced and my blood sugars have become more difficult to control, I have needed more day-to-day medical support.just to remain stable. I have a jejunostomy tube for medications and low-volume feeding, and a Hickman line (permanent IV line) for medications and IV fluids. My team are gearing up to start me on parenteral (IV) nutrition, which carries with it many risks. Risks of bloodstream infection (septicaemia), liver damage and blood clots, to name just a few. I know that these risks are small in comparison to the guaranteed complications of starvation and malnutrition, but they are still significant.
I can accept the restrictions that my illness has placed on my life. I am still so grateful to be alive, and to have the opportunity to experience this wonderful world. But I don't feel ready to die. Not now, and not in five or ten years. Probably not even in 20 years. There are still so many things that I want to experience. I want to grow old with my husband. I want to see our friends' children grow up, and to have nieces, nephews and godchildren, and to be there for them. I don't want to miss the conversations, the celebrations; even the bad times. I want to be there to comfort my husband, friends and family; to grieve with them in the sad times and rejoice with them in the good.
I am not afraid of death. I just don't feel ready to stop living.
My husband and I are very open with each other about this. We both know that I have a life-limiting illness, and we live accordingly. We seize our opportunities when they arise - who knows what might be impossible for me by next year or the year after? We talk about funeral plans and end-of-life decisions for both of us. We discuss the things that are important to us about medical care, our thoughts on remarriage, what we want to happen to our bodies after death, and how we want to be remembered.
During one of these conversations, I asked my husband how he copes with the thought that I will die before I'm old. His response?
"I will love you for as long as I have you. And then a bit longer."
Sunday, 3 June 2012
Milestones
In some paediatric cancer units, the children are allowed to choose a bead for every medical intervention - each blood draw, chemotherapy dose, x-ray, etc. is recorded onto a long string of beads: their entire cancer journey mapped out in bright colours.
I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!
I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.
This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.
I think now is the time to add the next bead to my bracelet.
These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.
For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!
This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.
My lifelines - my hope for the future.
I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!
I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.
This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.
I think now is the time to add the next bead to my bracelet.
These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.
For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!
This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.
My lifelines - my hope for the future.
Tuesday, 29 May 2012
Life's Too Short
On days like this I feel very glad that I'm not a health professional.
I strongly believe that people are entitled to the same quality of care, regardless of politics, social status or the cause of their condition. And yet I can't help feeling anger and frustration when I see people in hospital with me, apparently hell-bent on self destruction.
I can't help but think of the people I know who live so fully despite failing bodies - friends who have fought with everything to achieve their dreams in the face of unbelievable adversity. I think about the joy that these friends wring from every last little drop of life, despite knowing that life will be considerably shortened by illness, and the generosity with which they share their zest for living with those around them.
I can't help but think of the things that these people would do if they were given the opportunity to inhabit healthy bodies, like the ones that the people around me are destroying. It would be unfair of me to suggest that everyone should seek to change the world in big ways just because they have a strong and healthy body, but I wish that I could show these people how lucky they are.
I wish that I could make them appreciate the pleasures of eating good food in moderation, of having limbs that support their weight without pain; the satisfaction of a deep breath, and of the feeling of sun against bare skin. I wish that I could encourage them to make the most of every conversation; every sight and sound and touch and smell. I wish that I could give them some of the enthusiasm and love of life that so often comes to those of us that are constantly reminded of how short and precious life can be.
I resent the casual way in which some of my fellow patients treat their bodies, hardly seeming to care whether they live or die, and I feel angry that they've brought suffering on themselves by smoking and drinking and taking drugs and eating excessively, but most of all I feel sadness for them and all the things that they're missing.
Ferris Bueller got it just right when he said, "Life moves pretty fast. If you don't stop and look around once in a while you could miss it."
I strongly believe that people are entitled to the same quality of care, regardless of politics, social status or the cause of their condition. And yet I can't help feeling anger and frustration when I see people in hospital with me, apparently hell-bent on self destruction.
I can't help but think of the people I know who live so fully despite failing bodies - friends who have fought with everything to achieve their dreams in the face of unbelievable adversity. I think about the joy that these friends wring from every last little drop of life, despite knowing that life will be considerably shortened by illness, and the generosity with which they share their zest for living with those around them.
I can't help but think of the things that these people would do if they were given the opportunity to inhabit healthy bodies, like the ones that the people around me are destroying. It would be unfair of me to suggest that everyone should seek to change the world in big ways just because they have a strong and healthy body, but I wish that I could show these people how lucky they are.
I wish that I could make them appreciate the pleasures of eating good food in moderation, of having limbs that support their weight without pain; the satisfaction of a deep breath, and of the feeling of sun against bare skin. I wish that I could encourage them to make the most of every conversation; every sight and sound and touch and smell. I wish that I could give them some of the enthusiasm and love of life that so often comes to those of us that are constantly reminded of how short and precious life can be.
I resent the casual way in which some of my fellow patients treat their bodies, hardly seeming to care whether they live or die, and I feel angry that they've brought suffering on themselves by smoking and drinking and taking drugs and eating excessively, but most of all I feel sadness for them and all the things that they're missing.
Ferris Bueller got it just right when he said, "Life moves pretty fast. If you don't stop and look around once in a while you could miss it."
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