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 fear. Show all posts
Showing posts with label fear. Show all posts
Thursday, 14 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.
Tuesday, 22 May 2012
Is it ok to be scared?
Of course it's ok to be scared.
Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.
The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.
I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.
One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.
Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.
Fear is one of those things that can seriously get in the way of living a productive life despite illness.
For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.
I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!
Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!
Am I still scared?
Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.
Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.
The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.
I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.
One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.
Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.
Fear is one of those things that can seriously get in the way of living a productive life despite illness.
For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.
I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!
Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!
Am I still scared?
Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.
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.
Tuesday, 27 March 2012
Being kind to myself
I have been feeling sad since I got home from hospital at the end of last week.
Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved.
Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.
My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years.
Deep down, I know that this isn't a helpful attitude, but how to change things for the better?
First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?
Where do I start?
1. Take a long, hot bath
2. Paint my nails
3. Smother myself in my favourite body lotion
4. Put on my prettiest pyjamas
5. Play some feelgood music
That done, I'm ready to adjust my attitude.
I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all.
I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.
It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.
So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.
My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it.
Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone?
1. Spend time with friends
2. Wear lipstick
3. Ask for help
Simples!
Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved.
Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.
My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years.
Deep down, I know that this isn't a helpful attitude, but how to change things for the better?
First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?
Where do I start?
1. Take a long, hot bath
2. Paint my nails
3. Smother myself in my favourite body lotion
4. Put on my prettiest pyjamas
5. Play some feelgood music
That done, I'm ready to adjust my attitude.
I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all.
I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.
It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.
So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.
My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it.
Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone?
1. Spend time with friends
2. Wear lipstick
3. Ask for help
Simples!
Monday, 7 November 2011
A Bad Case of the Monday Blues
Mondays often find me in contemplative mood, and there are certain questions that come up in my mind again and again, week after week.
Will I achieve anything this week?
How many plans will I have to cancel because my body lets me down?
Will I end up spending days in bed or even in hospital this week?
There is a certain amount of fear associated with these questions. Fear that the next severe asthma attack or anaphylactic reaction will be my last - not just landing me in ICU, but worse; fear that my friends or husband will eventually get fed up with me being sick all the time; that I'm no use to anyone.
There is also the unnamed fear that I might not be strong enough to handle whatever comes next. My body likes to throw curve balls, and also seems excessively fond of my local hospital, despite the food. I find hospitals scary places, which seems an odd thing to admit, given the amount of time that I spend in them, but every time I get that scared, tight feeling in my chest, and would like nothing better than to stick my head under the duvet until it all goes away.
But, as many of you will know from personal experience, that isn't an option. The pain, nausea, fatigue, dizziness and shortness of breath will follow you under the duvet. They are in this for the long-haul.
So I have tactics. I try to be prepared for the unexpected (I still need to show you my hospital bag and handbag), and try to make friends with the doctors and nurses. I keep good 'emergency lists' so that the ER doctors are able to treat me appropriately while they wait for my medical records, and so they can see the most important points in my medical history without having to spend several days poring through my (extensive) notes. I try to stay well hydrated so that my veins are as prominent as possible, keep my phone, kindle and laptop charged, keep a hospital bag packed, and keep plans with friends as flexible as possible.
Every Monday, despite my fear of what this new and unknown week may have in store for me, I try to remember that it may have wonderful things in store. There are beautiful and amazing things to be found in each new day, and I try to spot them and be grateful for them. I am so grateful to you, dear reader, and to my friends, husband and family for giving me the strength to face this new week, and the hope that the good in this week will outweigh the bad.
Will I achieve anything this week?
How many plans will I have to cancel because my body lets me down?
Will I end up spending days in bed or even in hospital this week?
There is a certain amount of fear associated with these questions. Fear that the next severe asthma attack or anaphylactic reaction will be my last - not just landing me in ICU, but worse; fear that my friends or husband will eventually get fed up with me being sick all the time; that I'm no use to anyone.
There is also the unnamed fear that I might not be strong enough to handle whatever comes next. My body likes to throw curve balls, and also seems excessively fond of my local hospital, despite the food. I find hospitals scary places, which seems an odd thing to admit, given the amount of time that I spend in them, but every time I get that scared, tight feeling in my chest, and would like nothing better than to stick my head under the duvet until it all goes away.
But, as many of you will know from personal experience, that isn't an option. The pain, nausea, fatigue, dizziness and shortness of breath will follow you under the duvet. They are in this for the long-haul.
So I have tactics. I try to be prepared for the unexpected (I still need to show you my hospital bag and handbag), and try to make friends with the doctors and nurses. I keep good 'emergency lists' so that the ER doctors are able to treat me appropriately while they wait for my medical records, and so they can see the most important points in my medical history without having to spend several days poring through my (extensive) notes. I try to stay well hydrated so that my veins are as prominent as possible, keep my phone, kindle and laptop charged, keep a hospital bag packed, and keep plans with friends as flexible as possible.
Every Monday, despite my fear of what this new and unknown week may have in store for me, I try to remember that it may have wonderful things in store. There are beautiful and amazing things to be found in each new day, and I try to spot them and be grateful for them. I am so grateful to you, dear reader, and to my friends, husband and family for giving me the strength to face this new week, and the hope that the good in this week will outweigh the bad.
Subscribe to:
Posts (Atom)