Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 12-14-2013, 09:13 AM #12
Brambledog Brambledog is offline
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Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
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I'm sorry, this turned into one of my essays...

Murgir, you are not lazy in any way. This monster we are fighting affects us all differently, and many folk here have had to stop working. I am very lucky that I was able to do something part-time that I can manage. Without that I would be on benefits too, and glad to have them.

You will keep yourself busy anyway, because you've been used to doing things. Only someone who has never had a long-term illness (or known someone close with one) could think it would be fun/easy/relaxing to have to spend months off work and not doing much... We all know that it sucks, that you would like nothing more than to have your good old reliable body back and work, than to have to slowly move about with this one.

It's really important that you don't blame yourself in any way for what has happened and what is happening to you. Look yourself in the eye in the mirror and tell yourself that you have done everything you can to prevent this, and that sometimes, stuff (not the word I'm thinking of) happens that we just have to accept.

Your best chance for remission or less pain is to try to come to terms with your losses, and to get rid of some of the stresses that have built up inside your body. When things have settled into a bit of a routine, find yourself a bit of time each day to do some relaxation and gentle exercise, meditation, massage, etc - whatever helps you relax - and mentally give yourself a break. You didn't ask for this, you didn't do this to yourself, and you could have done NOTHING to prevent it. The fact that you get up each day and still face the world is something you should be immensely proud of.

I remember well the dark months early on when I first had to admit that I wasn't going back to my job, and that the future I had planned for myself and my family just wasn't going to happen anymore. We all had to adjust, and even though things have been tough for my family, I never pretend to myself that I have not had it hardest. The guilt, the pain, the grief at the loss of things you didn't even realise you cared so much about - working, independence, shopping alone, walking the dog, getting the house clean... The irony is vast - they say you never appreciate what you have until you lose it. Well yep, it is indeed true, but of course you can't know that unless it happens. Chicken and egg.

I know the routine now, I know what I should think, i know what i am responsible for and what i could not change, and most of the time I manage to bury the guilt and anger and 'why me?' deep down, and get on with life - but those things are still there, and sometimes they jump up and get me for a while, and I grieve all over again... We are only human, not robots after all.

I had a night like that too when it first happened, and I'm so sorry you have had to deal with so much hurt and pain and loss. Remember though that you are no less a person now than you were before this. If anything you are stronger and more resourceful, because you have to be. You are aware of your life and your body in a way the healthy thoughtless munchkins outside are not. Use your strengths to find other things that give you a sense of accomplishment and usefulness, that give you pride and make you smile. Things that still get your heart pumping, and allow you to sleep peacefully at night.

Things will never be the same again, but the old sayings have it best - when one door closes, another opens. Find those new doors and open them for yourself, and be proud of yourself even if your accomplishments seem small to others. Remember that their scale of normality is just different. One day they will learn the same lessons, hopefully not for many many years, but for now you know more than they do.

Stay strong and don't let this beast of CRPS get you down for too long. I'll be thinking of you, and I'm sorry if this has seemed preachy. I'm a wordy soul at heart I know, but I mean well, honest

Bram
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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