NeuroTalk Support Groups - Just have to say....

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Just have to say.... (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/23862-just-have-to-say.html)

Quote:

Originally Posted by JOAN_M (Post 125300)

...rsd is a monster. that is for sure, but monsters are able to be tamed, or trained or slayed if necessary .... i think you need to literally visualize this monster, and then decide how you want to deal with him. i have accepted my monster and some days he tries like heck to bite me, but i refuse to let him get my spirit, and sometimes i have to get tough with him...

Great image, Joan. For years, I described my own personal "monster" as a huge alligator clamped down on my leg, with sharp teeth at the knee and ankle and an unrelenting pressure. Someone asked me if the 'gator had a name. Once I thought in those terms and named her, I was on my way to deal with it better. I could actually talk to the 'gator. (NEVER out loud or when others were around - I would have been locked away LOL! :D )

I think of mine as 3 year old monster child who is totally out of control. If I give in to every demand then I only have to put up with the "normal" terror - but if I DARE to do ANYTHING AT ALL then I will suffer endlessy for it. It allows me to have an "ok" presentation to the outside world, as long as I "explain what is going to happen" before I go out (2 hours + in bed), go out for less than 3 hours (unless it has a tantrum) and am willing to spend a certain amount of time in bed (giving in afterwards and rewarding it).

It is an absoloute monster and I have found that whilst it no longer controls me, I MUST change my life to try and life in harmony with it. Whilst it doesn't stop me doing things - I must be willing to accept the repercussions for doing things.

However, the biggest "monster" I had to fight in order to learn to live (with some quality of life) was FEAR! fear of pain, of disability, of being different, of the unknown, of depression (or leaving it). In fact, FEAR of (at the time) being a 16/ 17/ 18/ 19/ 20/ 21 year old girl who is suddenly very disabled and in agony and yet who is expected to be normal, not show pain on the "outside" and deal with being different...

but, I did it, and now, (some of the time) I live in harmony with the monster, and some days she punishes me, but, I do have some quality of life! even if it is with a monster, a wheelchair, a carer and a sick bucket! ! ! !

Love

Froggsy xxxxxxxxxxx

Mines a gremlin, I discovered the lil monster back in the summer of 05.

It works to consider it a petulant terrible two year old... holey he was a cholicy baby.. If I raise him well can you promise he will leave home one day?

yep :P treat him well, and look forward to the day you send him to school so he's out of your hair for a couple of hours, and then send him out and away with all his bags asap!!

xxxxxxxxxxxxxxx