I’ve had RSD for 3 years, 11 months and 2 days. I’ve lost my ability to work and do anything I enjoy. I spend my days fighting this dreadful disease. I have to watch very carefully what I do and limit my activities greatly. Every moment is done with RSD on my mind and knowing the consequences. I have to ration the steps I take to limit the pain and the swelling. My hand is always on fire. My sacroiliac prevents me from getting into any comfortable position. Yet, I have tried to appear normal. The people around me don’t understand RSD even though I have told them about it and given them written information. Sometimes I think that they think it’s all in my head and that I’m crazy. (Yes, RSD has driven my crazy to an extent). I try to hide my pain from them because no one wants to be around a grumpy, sick person. But they could still have at least a little compassion and ask how I am doing. They don’t acknowledge it.
Monday is the day I see my grandson (the one thing I do enjoy now). I plan, as we have to with RSD. Last night I called my daughter to arrange the details and she informed me that my grandson would not be coming over today. She was very snippy and said she made other plans. I reminded her how I have to plan for it and not do much the day before and plan a day after to recover. I told her how I had gone shopping and planned dinner for them. She went on about how she wasn’t going to do Mondays anymore. He sees his other grandmother on Thursdays and I asked if she was still going to do that and she hesitated. I don’t know why I’m being dropped. Everyone appears to be having a good time here & I don’t complain. Maybe they don’t want to be around a sick person. I’ve lost friends who drifted away since I got RSD. It hurts! The emotional pain on top of the physical pain is way too much for me to handle. I’m pretty much isolated. It’s so difficult for me to go out. Last week I got ready to go to a wedding and couldn’t get my shoes on because my feet were so swollen. Depressing. It’s like I can’t plan things because I don’t know whether I will be able to make it or not.
RSD has taken so much from my life and it is so difficult spending my life just fighting it. I don’t have a support system. My husband is getting tired of it. I just don’t know what to do.
I haven’t slept much, cried a lot & know a flare is on it’s way.
Thanks for letting me vent. Hopes to a low pain day for you all.
Linmarie