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.
Showing posts with label life-changing. Show all posts
Showing posts with label life-changing. Show all posts
Sunday, 3 June 2012
Sunday, 27 May 2012
Visible Reminders of Illness
Every so often the question arises about whether it's 'better' to have a visible illness or an invisible one.
Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.
I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.
Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.
It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.
Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.
But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.
Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.
I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.
Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.
It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.
Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.
But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.
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.
Sunday, 6 November 2011
Five Things
So, yesterday - no blog post.
Just another little reminder of how things can just change in an instant with this particular condition. I got dizzy and blacked out, as happens sometimes with my autonomic dysfunction. I fell and dislocated my hip and shoulder, and spent the night in hospital having them put back. The hip was pretty straightforward (though painful), but the shoulder, as ever, was temperamental and took several attempts. While I was there, it was incidentally discovered that my sodium was critically low at 121 mmol/L (135-145 is normal). It's never just one thing, is it? I had some IV fluids and other medications, and came home late this morning.
In light of that, the topic for today seems rather appropriate - 5 things that changed my life. I've been ill for as long as I can remember, so there's no life-altering accident, or date that I can pinpoint as an anniversary of 'the illness'. Just day after day, deterioration after deterioration (and some pretty impressive improvements in between, for balance); as I've aged, more and more body systems have been involved, and I've needed more and more medical interventions in an attempt to maintain the status quo.
So what has really definitively changed my life?
Accepting that this is my life, and that no amount of wishing or worrying will change that. I am in awe of the beauty and majesty of this planet, and of the complexity of life, and I am so grateful to be here and alive. Yes, there are days when I weep and wail and bemoan my lot in life. Experiencing symptoms day in and day out is tiring, both physically and emotionally, but accepting the reality of it has given me the freedom to experience life more fully. I am better at looking after myself, and find it easier to reach out to others as a result. I try not to waste the opportunities that I have - those precious days when I have the chance to do something new or fun, and feel well enough to seize that chance!
Meeting my husband opened up a whole new world for me. Until that point, although I'd had boyfriends, I'd always wondered, secretly, whether there was an element of pity in the way that they viewed me. Not so with this one. I feel so lucky to be in love with a man who loves me wholeheartedly, accepts my limitations, praises my achievements, supports my ambitions and is by my side through everything. He is a remarkable and wonderful man!
Physics (or accepting that I am a supergeek) was another life-changing moment. Until I started to study physics to an advanced level, I'd always thought of myself as very average intellectually. Physics changed the way that I look at the world and the way that I look at myself. The more I learn about this complex world and some of the scientific processes underlying the way that it functions, the more awed I am.
Learning that there isn't always a quick fix. Doctors (especially surgeons) really, really want to be able to fix their patients. It's hard for them to accept that there isn't always a quick fix, or even a fix at all, and often even harder for them to relay that information to their patients. I would love to be able to have an operation that would fix even just one part of me, but in reality every intervention has knock-on effects. Sometimes the best option is to focus on quality of life and symptom control, rather than longing for that one definitive treatment that will make everything perfect.
Rescuing an elderly cat with health problems from a shelter, where the vets advised me that they didn't think she'd live much more than a year. Not only has Nutmeg given me four years of constant, adoring and loyal companionship, she has also helped me to focus on quality of life for myself, through the decisions that I've made on her behalf. Nutmeg has kidney failure, and her life could be prolonged with a special diet and daily medication. After a month of both, we realised (in discussion with our vet) that she was so miserable that it would be better for her quality of life to have a normal diet and no medication. We are so grateful that she now jumps around with excitement every mealtime, showing energy that we know she shouldn't have...
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Just another little reminder of how things can just change in an instant with this particular condition. I got dizzy and blacked out, as happens sometimes with my autonomic dysfunction. I fell and dislocated my hip and shoulder, and spent the night in hospital having them put back. The hip was pretty straightforward (though painful), but the shoulder, as ever, was temperamental and took several attempts. While I was there, it was incidentally discovered that my sodium was critically low at 121 mmol/L (135-145 is normal). It's never just one thing, is it? I had some IV fluids and other medications, and came home late this morning.
In light of that, the topic for today seems rather appropriate - 5 things that changed my life. I've been ill for as long as I can remember, so there's no life-altering accident, or date that I can pinpoint as an anniversary of 'the illness'. Just day after day, deterioration after deterioration (and some pretty impressive improvements in between, for balance); as I've aged, more and more body systems have been involved, and I've needed more and more medical interventions in an attempt to maintain the status quo.
So what has really definitively changed my life?
Accepting that this is my life, and that no amount of wishing or worrying will change that. I am in awe of the beauty and majesty of this planet, and of the complexity of life, and I am so grateful to be here and alive. Yes, there are days when I weep and wail and bemoan my lot in life. Experiencing symptoms day in and day out is tiring, both physically and emotionally, but accepting the reality of it has given me the freedom to experience life more fully. I am better at looking after myself, and find it easier to reach out to others as a result. I try not to waste the opportunities that I have - those precious days when I have the chance to do something new or fun, and feel well enough to seize that chance!
Meeting my husband opened up a whole new world for me. Until that point, although I'd had boyfriends, I'd always wondered, secretly, whether there was an element of pity in the way that they viewed me. Not so with this one. I feel so lucky to be in love with a man who loves me wholeheartedly, accepts my limitations, praises my achievements, supports my ambitions and is by my side through everything. He is a remarkable and wonderful man!
Physics (or accepting that I am a supergeek) was another life-changing moment. Until I started to study physics to an advanced level, I'd always thought of myself as very average intellectually. Physics changed the way that I look at the world and the way that I look at myself. The more I learn about this complex world and some of the scientific processes underlying the way that it functions, the more awed I am.
Learning that there isn't always a quick fix. Doctors (especially surgeons) really, really want to be able to fix their patients. It's hard for them to accept that there isn't always a quick fix, or even a fix at all, and often even harder for them to relay that information to their patients. I would love to be able to have an operation that would fix even just one part of me, but in reality every intervention has knock-on effects. Sometimes the best option is to focus on quality of life and symptom control, rather than longing for that one definitive treatment that will make everything perfect.
Rescuing an elderly cat with health problems from a shelter, where the vets advised me that they didn't think she'd live much more than a year. Not only has Nutmeg given me four years of constant, adoring and loyal companionship, she has also helped me to focus on quality of life for myself, through the decisions that I've made on her behalf. Nutmeg has kidney failure, and her life could be prolonged with a special diet and daily medication. After a month of both, we realised (in discussion with our vet) that she was so miserable that it would be better for her quality of life to have a normal diet and no medication. We are so grateful that she now jumps around with excitement every mealtime, showing energy that we know she shouldn't have...
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
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