Continued from 2/3
RSD is not heard of much, so when I tell people what I have got, some are numb struck especially people that have know me a long time. Some people are very strange towards RSD whether its because they are afraid or just don't care I don't know. Some ask me how I am, and then tell me about them selves or other people they know, before I have time to answer.
Friends and relatives who used to come now no longer do, for one reason or another.I get a lot of so called promises of help or relaxation times but they are not always kept and I am let down a lot. Sometimes it feels like my only true friend is Sandy, my dog. A lot of my running friends still keep in touch.
I used to be know as Gill the runner, now, Gill with the RSD. Comments like you should be used to the pain by now have all so bean said. I was told I did not like this person doing an activity because I could not do it my self. Told the RSD was caused by running and if I had stopped when told I would not have got RSD, I was not told to stop running. ANY BODY can get RSD though falling or an operation ANY BODY. Told I did not know what pain and suffering was as I was not old enough. RSD is one of the most painful condition there is. Once I was told quite rudely that I should not be in a shop on that thing (my scooter), comments like that can really hurt especially if I am down. If I went to bed at a normal time I would sleep, NO I would not I have tried. I go to bed between two and five am, mostly about four. When I so tired I usually sleep but not for long.
I was called a cripple, that really hurt. When I am in my wheelchair people talk to the pusher and not me as though I am are deaf or stupid. Some times people look at you and say there is not much wrong with you as I don't give in many times and carry on much the same when I can. Probably if I sat down all day or spent the day in bed or really played on it like some, people might think differently, but I am not like that. I need to be doing things if I can, if not, thinking about doing things
My RSD is most likely here to stay but there are things to help your self, like trying to remain positive enjoy things when you can. rest when needed, ignore people who think they know better than you, manage it the best you can after all who knows it better than you. Take no notice of people who don't care.
People walk away from very bad car accidents with hardly a scratch, I was so so unlucky to get what I did I did not deserve it. RSD is a very lonely disease as you are unlike to meet someone with the same, I can feel so isolated at times. With cancer there are so many people that have got it, or recovering from, so there is a lot more help and support.
Well I hope this better time keeps up and the pain stays low.
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