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."
Showing posts with label celebration. Show all posts
Showing posts with label celebration. Show all posts
Thursday, 14 June 2012
Sunday, 3 June 2012
Milestones
In some paediatric cancer units, the children are allowed to choose a bead for every medical intervention - each blood draw, chemotherapy dose, x-ray, etc. is recorded onto a long string of beads: their entire cancer journey mapped out in bright colours.
I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!
I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.
This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.
I think now is the time to add the next bead to my bracelet.
These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.
For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!
This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.
My lifelines - my hope for the future.
I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!
I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.
This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.
I think now is the time to add the next bead to my bracelet.
These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.
For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!
This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.
My lifelines - my hope for the future.
Sunday, 20 May 2012
Courage
A favourite quote of mine states that, "Courage doesn't always roar; sometimes courage is the small voice at the end of the day saying 'I will try again tomorrow'." (Mary Ann Radmacher).
This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.
My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.
Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.
Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?
Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.
This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.
My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.
Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.
Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?
Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.
Friday, 9 March 2012
Acute and Chronic
After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.
Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.
With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.
Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.
Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.
My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.
I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?
I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?
My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.
I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.
I picture myself on arrival at the hospital:
Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?
That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.
I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.
Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?
Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.
Taxi!
Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.
With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.
Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.
Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.
My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.
I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?
I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?
My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.
I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.
I picture myself on arrival at the hospital:
Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?
That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.
I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.
Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?
Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.
Taxi!
Wednesday, 29 February 2012
Celebrating Getting Older
It's a week until my birthday, and I've been thinking a lot about getting older.
I can't say that I'm looking forward to the day itself. I'm currently stuck in a bit of a gastroparesis flare, so there will be no cake, no Champagne, and certainly no 7-course dinner at Le Gavroche for me! None of my clothes fit me, I have even less energy than usual, and forcing myself to take in at least some nutrients is causing pain, nausea and vomiting.
Despite that, I like birthdays, even this one. Every year I feel pride at surviving another year. Yes, every year I survive things that I might not have survived. More than that, I celebrate having survived the pain, nausea, boredom, frustration, breathlessness. I have survived everything that my failing body has thrown at me and everything the medical world has thrown at my failing body.
I'm so grateful to have the opportunity to have lived long enough to get into my 30s; so grateful to have had the opportunity to marry my very best friend, who loves me more than I've ever been loved before; to have travelled the world, met amazing people, and spent time with those who mean the most to me.
I look forward to celebrating this next birthday, regardless of whether I'm healthy enough to celebrate in the way that I would like. It's enough for me to be here - everything else is a bonus!
I can't say that I'm looking forward to the day itself. I'm currently stuck in a bit of a gastroparesis flare, so there will be no cake, no Champagne, and certainly no 7-course dinner at Le Gavroche for me! None of my clothes fit me, I have even less energy than usual, and forcing myself to take in at least some nutrients is causing pain, nausea and vomiting.
Despite that, I like birthdays, even this one. Every year I feel pride at surviving another year. Yes, every year I survive things that I might not have survived. More than that, I celebrate having survived the pain, nausea, boredom, frustration, breathlessness. I have survived everything that my failing body has thrown at me and everything the medical world has thrown at my failing body.
I'm so grateful to have the opportunity to have lived long enough to get into my 30s; so grateful to have had the opportunity to marry my very best friend, who loves me more than I've ever been loved before; to have travelled the world, met amazing people, and spent time with those who mean the most to me.
I look forward to celebrating this next birthday, regardless of whether I'm healthy enough to celebrate in the way that I would like. It's enough for me to be here - everything else is a bonus!
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