Well, fifteen years has gone by since this RSD plus all its friends invaded my life making it "Hell on Earth". I think back to when it happened. If I did not go running that night or had not doubled back for a friend. Would things have bean different? (I had already passed the bit where I fell, it was the second time round, that caused me to fall).. But there are not, so its up to me to make the best of it. Most people can not cope and end up in a wheelchair at some time because of the pain and the sheer pressure of it all. WHY am I not? I am no different to them, am I? I think I am a strong person and that helps a lot in this case. I did not want to be anywhere near a wheelchair just the thought of it scared me s**tless. I did need to use one for a while though when I was not able to walk the first few years because of the severe pain. I still do if things get really bad, plus my scooter. This I did not get for two years but pleased I did because it got me out more.
RSD is like nothing else--- to start with hardly anyone has heard of it-- even most Doctors, mine did do some research to treat me with more understanding. I have never yet met anyone with it apart from online. So you have no one to discuss your problems with, NO specialist- again, you are lucky if someone has even heard of it. When I have bean in hospital-- its the Pain Team I have to deal with. I am no a big fan of them. They always make things worse for me or is it I just do not want them. When I have SEIZURES, I have to stay put as I am not safe otherwise. No walking or moving around, mostly sedated. All this time the RSD is winning and gaining more control. Once that happens that's it, game over. That is not going to happen, that's if I can keep things together. In some references RSD is called the DEVIL CURSE not without reason. RSD is similar to MS in some ways but can be more painful.
I have had very bad dark days after the SEIZURES or illness-- when I think it would be so much easier to just lay down and give up. I have on many occasions looked back at my life that was perfect to me, well-- may be not that good, but a lot better than now. I could run, walk, have fun, go out when I wanted to, sleep, and have a life with friends.
Since the RSD this has all changed. Now I can not stand loud noises, vibrations, car journeys of more than say an hour, even then I have pain and are more like a ZOMBIE when I arrive because of extra tablets. Going on the bus can cause be to scream inside with pain. Ten minute journeys that's all I am talking about, that's all. Because of the vibrations, not everytime, but most and if I have bad pain this will be worse after for sure. This restricts me a lot-- no parties, crowds, pictures. I have bean a few times but had to pick a very good day. Even then the flashing lights and then noise from the speakers, its not good. but its the best I can do. A lot of times I have to shut my eyes. Angela thought a few times I was a sleep.
When watching Glastonbury there were loads of flashing (images). (Even that sort as well) this can make me feel very unwell. This is partly to do with the SEIZURES. Colds, knocks, normal every day things that do not bother non RSD person will make my life hell. I have a heavy cold at the moment. I have given up a lot but still have things I can do. I am still able to walk just some days, still on crutches from the knee operation but hopefully soon that will be changed. Bean a longer journey than I thought it would be. Knitting on good days, sewing when I can, puzzles, (but not with fire hopefully.) I can take Summer for her morning walk most of the time. Housework a bit hit and miss. Looking after the Grandchildren, plus the children two doors away, and cat sitting. Typing this, my fingers are not good the feeling has gone and my brain keeps fogging up. I make a lot of mistakes so everything takes a lot longer. Things like this you all take for granted and just get on with it. For me very frustrating. People ask me out and are disappointed if I say no and after a while don't bother asking I try to explain but its not easy. I have got fifteen years experience and still don't under stand it. Just wanting a big hug some days, but knowing this will hurt. Disability is another thing. PIPs say I am not disabled, an ongoing case at this moment. This is very frustrating
Running is what I miss the most just the sheer pleasure of it. If you have never run you will not really understand. Just think waking one day and everything you did the day before, work, pleasure, every thing just like that gone.Then add the PAIN and how would you feel???
In the beginning I had Wietse he was an Angel in disguise. He helped me so much and without him I know I would not be as good as I am now. He used to say it was me that was doing all the hard work not him. He showed me the right path for sure. A shoulder to cry on and someone who knew what RSD was. Thank you Weitse for all you did for me. (get in touch please)
I have had some treatments that helped somethings but made others worse. I think the cure if there is one, is a long way off so all I can do is just get on with it and keep moving.