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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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Senior Member
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I'm so sorry you had such a nightmare appointment. Know just what you mean. It's awful isn't it? We know we shouldn't feel embarrassed because it's something we cannot control and didn't ask for, but we still do. I hate that you can tell that they just don't 'get it' as well, even when you are clearly in extreme pain and distress sometimes. I know they have the whole calm and rational doc act going on for our own good, but sometimes it would be nice for a bit of human sympathy at such times when you just feel completely beaten by the CRPS. As you say, it takes a while to gain control again...
No one but another sufferer can know how bad the pain and loss can be. I've only been living with this thing for nearly two years, but I've lost so much already and the future is a frightening place I don't like to think about too much. Some very bad days I don't know how much more I can bear. Most days I'm ok, but I can't remember my last really good day with it. Sad and frustrating ![]() Try not to feel so bad, and feel proud of yourself. You are not a complainer or a wimp, this condition is horrible and at times does just strike you down to a really low point. Most days you cope with everything and try to protect other people from having to deal with ots effects, you are allowed the odd (involuntary) time off that constant effort. I'm glad you were with a doc at the time this happened and not alone, but obviously the exam itself prompted the whole thing... I don't know. Cruel doesn't begin to describe such times. I miss walking with my husband, children and dog. I miss independence and being able to go shopping in my local town without having someone with me to control my wheelchair on the nightmare sloping pavements! Beaches, running up the hill from school with my youngest, sports, tourist type exploring....so many things. Mostly I just miss being active, getting stuff done and being the one in control. My poor husband has to do so much now on top of working, and although he tries his best I feel like the whole house is shouting at me for attention. Take care of yourself for now and give your body time to get over the shock of that experience, it must have really shaken you up. Things will settle down a bit again, and you will pick yourself up again. We know how hard that is to do though... Having a bad day here, my foot is awful lately and I cannot get away from it. Thought my knee was bad, but the foot thing is so much worse right now. I've just put a patch on and I'm desperate for it to soothe things just a tiny bit. So fed up today....but tomorrow might be better, you have to keep hoping ![]() All the best, hope you feel better very soon ![]() Bram. |
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