I work full time with the devlopmentally disabled I also have a husband that is very visually disabled. When I see these young people at work in wheel chairs and they are really stuck in their bodies they cannot move , some are very much with it and it is amazing to me that they come in with smiles are their faces . I have one favorite and he is an amazing young man., his body is a wreck , really can't move anything his arms very little, but he comes in and makes me laugh every day and I make him laugh. At first when I got this disease I was hysterical , I was always a person with lots of stamina., now ugh!!!!! I get angry because I am 60 but feel 80., I have just developed rhumetoid arthritis also. Erin, you were one of the first people on this board that amazed me., how you cope and what you went thru...you were an inspiration and always will be. I just wish more people would understand you don't have to look like hell in order to feel like hell. But sometimes even my own family forgets. I guess we take one day at a time and keep pushing., I know it is hard for me to work full time, but I need to work too more years to get a small pension., but that is better than none.
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Originally Posted by teresakoch
You hit the nail on the head about "looking" just fine - it's hard for others to understand how sick we are, and there is absolutely no way to describe it in a way that those who don't have it can fully appreciate.
It's good that you have supportive parents - speaking as a mom, I know that they want to make sure that you are taken care of. You might be able to qualify for some government disability services, which might make it easier for you to get around. It's a tough call - being at home means that there will be someone around to keep an eye on you and make sure that you don't hit a crisis.
I think it must be harder to get this diagnosis when you are younger - you want to be able to get out and do everything that everyone else your age is doing, but your body betrays you. It sounds like you have a good attitude, and that is so important -  |