Short answer is no. I have had M.E. for over 10 years now (in the States they tend to call it CFIDS, but my belief if that it is slightly different). Anyway, like you I do not go out and friends gave up on me years ago. However, due to any circadian sleep cycle (it is 4.35am where I am) I cannot work, yet if it wan't for that part of my illness I probably could as I managed to get an MA after my name. I understand how you feel.
When I was diagnosed, I was told that I would be in a wheelchair within a couple of years and I refused to accept that. I do not have a wheelchair. I accept the disabled parking badge, but my illness will not stop me driving (even if I don't go very far). That is how I feel about my illness, but if you think you need a w/c then get one. In Scotland, our malls and supermarkets have wheelchairs and
ECVs to borrow, but I do still try to resist and just lean on a trolley (cart) for as long as I can. A wheelchair would help me quite a bit, but with it I would lose my fight with this illness; the fight with my body that doesn't act like my body.
To anyone looking, my legs function. What they don't see is the way that you learn to smile through the pain just to stay that little bit more independent. They don't see when my legs give out and I fall down the stairs or the amount of rest it takes to recover from a small walk. I am in constant pain, but I won't let it stop me trying. I do get a w/c for long days in Disney (hence our 4 week holidays), but I also just do what I can and then leave. No-one else can feel what you feel so I can't even say if a w/c is right for you- only you can answer that bit. Never put yourself in pain/danger because what other people think. I do it to keep my sanity, and not for a single person other than myself. I listen to people on the board talking about fakers, and to look at most would think I was, but they cannot feel the pain, the fog, the exhaustion...the list goes on. In fact, most people still think of 'yuppie flu' and think that M.E. is about being really tired. It is like saying someone with alzheimer's is just really forgetful. My preference for an alternate (and accurate) name for M.E./CFS is 'Living Death Syndrome'.
I understand about the normal life statement. You will have to make changes in your life to get this (I'm still working on it) to get that and if a w/c gives you that then DO NOT let any other person have any influence on trying to achieve a 'normal life'. It is your life! They are the same people that couldn't take the time to understand your illness and remain your friend so they have absolutely no right to try to influence your decision. Your mother does have some say, as she loves you, wants the best for you, and is your only true friend in the world.
I am almost 25, have been ill for nearly 11 years and am closer to a hermit than you can imagine. I will not feel guilty for trying to make my life better. If a w/c is right for you, ignore everyone else. (And this will go down like a lead balloon here, but I don't care). I really should be in a w/c, but I fight. I have to give in at Disney or I couldn't go. But in saying that, so what if people think I want a w/c as a 'cool toy'? It is rather a novelty for me because when Disney is over, I have to leave my 'toy' and keep fighting for the rest of the year (and my life).
What I am trying to say is: If it makes your life better, get it. But, try only to let it be a physical 'crutch' and not a mental crutch. Use it when you need it and be grateful for the pain you feel in your legs sometimes (because you can still at least feel them). Don't let anyone keep you out of w.c if you need it, but don't let other people's opinions keep you in it either (like if you feel people will look at you funny because today you need it and tomorrow you don't or you need it to get around the mall but want to walk to the bathroom yourself while your mother gets the lunch). You know your body and it's limitations. A Dr. who thinks that should go back to medical school- provide him with some information and education about your disabilities as you know more than him.
I hope that makes sense and doesn't seem like I am telling you what to do. If anything I hope you know that I can relate to a lot of things you have said, and that I truly feel for your situation. Reach for that 'normal life' and grab it with both hands!
Lisa
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