I was looking at the notes feature that Facebook has started and came across entries for a blog I started in late 2009 but gave up on, probably because it was just too difficult mentally.
I am struck by just how little my thoughts, experiences and outlook on life have changed (or rather haven't) in the two years since I wrote them. So I am adding these to this blog as they may help other CRPS sufferers. I had had CRPS for four years when these were written..... here is the first.
Originally written Wednesday, 11 November 2009
I'm sure anyone who suffers from chronic pain, or any other chronic condition has gone through periods of depression, frustration, despair and the biggie.... suicide. I certainly know that I do to a greater or lesser degree all the time. I admit freely that there have been times when I have felt suicidal, especially in the early days.
How do you cope with an illness such as CRPS that literally rips your life apart, takes everything that you did, hobbies, day to day living and so on? My life changed overnight, and I constantly seem to fight to retain the little quality of life that I still have.
It never ends, the condition doesn't give up, you can't cure it so you're stuck with it for life. If you let it life becomes a constant frustration. There is so very little that you can do for yourself, you are constantly reliant on someone else. In my case it is my husband who has become my full time carer. It breaks my heart that I have ruined his life, even though it isn't my fault it's the condition. Thankfully we were very happily married and so work incredibly well as a team. We have to....
At the end of the day though, life for someone such as myself is a battle against pain, and the associated exhaustion and depression that comes with that. I am stuck in a chair all day and then sleep in that chair at night as I can't go to bed. For much of the time I can't do anything except read and then sleep. I can perhaps use the computer for a short time, play a video game, do some puzzles. Going out is a military operation, what with being helped to dress, get in the car, get in the wheelchair etc etc etc. Doing anything makes the pain and exhaustion worse, so should I dare to do too much (which is nothing compared to what I used to do) I get punished and have to just sit in my chair doing nothing.
There are times when I get so frustrated, not being able to do things drives me nuts. Nothing is spontaneous anymore. I can't just nip down the road to get some shopping. I can't go out alone, I have lost all sense of independence. Isolation seems the right word. I will never work again, just getting through life from day to day is battle enough.
I happened to chat to someone, didn't know her, but at one point she said 'You're very positive'. Reflecting on that prompted this post because I thought about why I manage to be positive. I have always been stubborn, bloody-minded and focused. I played sport and so have always been competitive. So I suppose I channel these qualities into my fight against CRPS. That is what life for someone in pain is all about I think.... fighting and not letting it win.
So I try to do what I can. There are days when my only 'achievement' of the day was to have a bath. On better days I might get to go out. I might go out regardless of how I feel because I won't let it win. No matter how small, if I have done something each day then CRPS hasn't won. I accept what I call the 'punishment' for doing things (pain worsens considerably) because doing those things makes me happy and perhaps fulfilled.
The way I look at it is that it doesn't matter if you feel sorry for yourself, do nothing, give up or whatever compared with trying to do things and make the most of the life you have. The pain etc will be the same regardless.
So my philosophy remains that you may as well try and make the most of it, be as positive as you can be. Otherwise what's the point of living? That philosophy is sorely tested more times than I would like to mention but touch wood, I'm still managing to stick to it.
I am struck by just how little my thoughts, experiences and outlook on life have changed (or rather haven't) in the two years since I wrote them. So I am adding these to this blog as they may help other CRPS sufferers. I had had CRPS for four years when these were written..... here is the first.
Originally written Wednesday, 11 November 2009
I'm sure anyone who suffers from chronic pain, or any other chronic condition has gone through periods of depression, frustration, despair and the biggie.... suicide. I certainly know that I do to a greater or lesser degree all the time. I admit freely that there have been times when I have felt suicidal, especially in the early days.
How do you cope with an illness such as CRPS that literally rips your life apart, takes everything that you did, hobbies, day to day living and so on? My life changed overnight, and I constantly seem to fight to retain the little quality of life that I still have.
It never ends, the condition doesn't give up, you can't cure it so you're stuck with it for life. If you let it life becomes a constant frustration. There is so very little that you can do for yourself, you are constantly reliant on someone else. In my case it is my husband who has become my full time carer. It breaks my heart that I have ruined his life, even though it isn't my fault it's the condition. Thankfully we were very happily married and so work incredibly well as a team. We have to....
At the end of the day though, life for someone such as myself is a battle against pain, and the associated exhaustion and depression that comes with that. I am stuck in a chair all day and then sleep in that chair at night as I can't go to bed. For much of the time I can't do anything except read and then sleep. I can perhaps use the computer for a short time, play a video game, do some puzzles. Going out is a military operation, what with being helped to dress, get in the car, get in the wheelchair etc etc etc. Doing anything makes the pain and exhaustion worse, so should I dare to do too much (which is nothing compared to what I used to do) I get punished and have to just sit in my chair doing nothing.
There are times when I get so frustrated, not being able to do things drives me nuts. Nothing is spontaneous anymore. I can't just nip down the road to get some shopping. I can't go out alone, I have lost all sense of independence. Isolation seems the right word. I will never work again, just getting through life from day to day is battle enough.
I happened to chat to someone, didn't know her, but at one point she said 'You're very positive'. Reflecting on that prompted this post because I thought about why I manage to be positive. I have always been stubborn, bloody-minded and focused. I played sport and so have always been competitive. So I suppose I channel these qualities into my fight against CRPS. That is what life for someone in pain is all about I think.... fighting and not letting it win.
So I try to do what I can. There are days when my only 'achievement' of the day was to have a bath. On better days I might get to go out. I might go out regardless of how I feel because I won't let it win. No matter how small, if I have done something each day then CRPS hasn't won. I accept what I call the 'punishment' for doing things (pain worsens considerably) because doing those things makes me happy and perhaps fulfilled.
The way I look at it is that it doesn't matter if you feel sorry for yourself, do nothing, give up or whatever compared with trying to do things and make the most of the life you have. The pain etc will be the same regardless.
So my philosophy remains that you may as well try and make the most of it, be as positive as you can be. Otherwise what's the point of living? That philosophy is sorely tested more times than I would like to mention but touch wood, I'm still managing to stick to it.
No comments:
Post a Comment
Comments are always welcome....