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 legacy. Show all posts
Showing posts with label legacy. Show all posts
Thursday, 14 June 2012
Tuesday, 1 November 2011
The Book (and a bit of an explanation)
November is National Blog Post Month.
It is also:
Native American Heritage Month
Pancreatic Cancer Awareness Month
COPD Awareness Month
National Novel Writing Month
Alzheimer's Disease Awareness Month
American Diabetes Month
Lung Cancer Awareness Month
Crohn's and Ulcerative Colitis Awareness Month
National Pomegranate Month
National Homeless Youth Awareness Month
Movember (in aid of prostate cancer research)
and International Drum Month
Most of those are entirely beside the point, but happy November anyway.
My reason for telling you that it's National Blog Post Month is by way of explanation for what is about to happen. Those nice people over at WeGo Health have suggested 30 different health-related blog topics; one for each day of November, and still being a bit of a newby in the blogosphere, I've decided to participate.
The first challenge is to come up with five working titles for an as-yet-unwritten book by yours truly.
1. The Uncertainty Principle:
Living with chronic health problems can be an unpredictable business. Even the very best laid plans can be thwarted at the last minute by pain, fatigue, or other symptoms. A severe flare-up or hospital admission can upset plans for days or weeks at a time. Yet we live in a society that runs according to schedule, which is full of deadlines and appointments, and in which unreliability can be seen as unforgivable. This book is full of real-life examples and practical tips to help people with chronic illnesses and their families balance the varied demands of illness and the outside world.
2. The Chaos Theory:
The world of chronic illness is full of important numbers: blood test results, drug doses, hospital patient ID numbers, telephone numbers for specialists, lung function results. The world of chronic illness is also full of long words, important dates and times, and paperwork. In an emergency, or when illness impairs mental clarity, recalling all these important details can be next to impossible. This book will guide you through the process of creating your own set of detailed medical records for reference, along with a concise emergency file containing the most important medical information.
3. Thank You for Today:
In this fast-paced world it can be easy to forget to notice the people and things around us that are beautiful and special. When every day revolves around symptoms, medication, testing, appointments and all the emotions that go alongside the practical aspects of chronic illness, everything else can fall by the wayside. Taking time for gratitude, and planning pleasurable moments into each day can shift the focus away from the illness and back to the person underneath the illness. It's all about you!
4. Capturing the Moment:
Those of us with chronic illness are probably not going to get better. We are not 'out of the game' for a day or a week, but for months or years. Some of us are going to die before 'our time'. How can we find ways to participate in life as fully as possible, while still making sensible health-related decisions and managing our symptoms to the best of our ability? We may not be able to get outside to see holiday decorations, host a large gathering, or eat special seasonal meals, but that doesn't mean that we shouldn't celebrate. This book brings both ordinary and extraordinary celebrations into the home, and provides ideas and suggestions about recording these memories to create a legacy for loved ones.
5. The Gourmet Guide to the NHS:
The definitive guide to eating in the NHS. All hospitals are given a rating, based on quality, originality and presentation of the food, as well as the seasonality of the ingredients used. Special features, such as wine lists and scenic settings are given special mention. Those hospitals that provide a tasting menu (with or without paired wines) are listed separately. This guide will be indispensable for all those planning to sample NHS hospitality.
What do you think? What would your book be about? What would it be called?
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
It is also:
Native American Heritage Month
Pancreatic Cancer Awareness Month
COPD Awareness Month
National Novel Writing Month
Alzheimer's Disease Awareness Month
American Diabetes Month
Lung Cancer Awareness Month
Crohn's and Ulcerative Colitis Awareness Month
National Pomegranate Month
National Homeless Youth Awareness Month
Movember (in aid of prostate cancer research)
and International Drum Month
Most of those are entirely beside the point, but happy November anyway.
My reason for telling you that it's National Blog Post Month is by way of explanation for what is about to happen. Those nice people over at WeGo Health have suggested 30 different health-related blog topics; one for each day of November, and still being a bit of a newby in the blogosphere, I've decided to participate.
The first challenge is to come up with five working titles for an as-yet-unwritten book by yours truly.
1. The Uncertainty Principle:
Living with chronic health problems can be an unpredictable business. Even the very best laid plans can be thwarted at the last minute by pain, fatigue, or other symptoms. A severe flare-up or hospital admission can upset plans for days or weeks at a time. Yet we live in a society that runs according to schedule, which is full of deadlines and appointments, and in which unreliability can be seen as unforgivable. This book is full of real-life examples and practical tips to help people with chronic illnesses and their families balance the varied demands of illness and the outside world.
2. The Chaos Theory:
The world of chronic illness is full of important numbers: blood test results, drug doses, hospital patient ID numbers, telephone numbers for specialists, lung function results. The world of chronic illness is also full of long words, important dates and times, and paperwork. In an emergency, or when illness impairs mental clarity, recalling all these important details can be next to impossible. This book will guide you through the process of creating your own set of detailed medical records for reference, along with a concise emergency file containing the most important medical information.
3. Thank You for Today:
In this fast-paced world it can be easy to forget to notice the people and things around us that are beautiful and special. When every day revolves around symptoms, medication, testing, appointments and all the emotions that go alongside the practical aspects of chronic illness, everything else can fall by the wayside. Taking time for gratitude, and planning pleasurable moments into each day can shift the focus away from the illness and back to the person underneath the illness. It's all about you!
4. Capturing the Moment:
Those of us with chronic illness are probably not going to get better. We are not 'out of the game' for a day or a week, but for months or years. Some of us are going to die before 'our time'. How can we find ways to participate in life as fully as possible, while still making sensible health-related decisions and managing our symptoms to the best of our ability? We may not be able to get outside to see holiday decorations, host a large gathering, or eat special seasonal meals, but that doesn't mean that we shouldn't celebrate. This book brings both ordinary and extraordinary celebrations into the home, and provides ideas and suggestions about recording these memories to create a legacy for loved ones.
5. The Gourmet Guide to the NHS:
The definitive guide to eating in the NHS. All hospitals are given a rating, based on quality, originality and presentation of the food, as well as the seasonality of the ingredients used. Special features, such as wine lists and scenic settings are given special mention. Those hospitals that provide a tasting menu (with or without paired wines) are listed separately. This guide will be indispensable for all those planning to sample NHS hospitality.
What do you think? What would your book be about? What would it be called?
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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