Quote:
Originally Posted by Stellatum
I got my handicapped parking permit today. This is a big deal for me. It's not that I couldn't get along without it, though it will certainly be a big help; instead, I think it's something psychological.
Many of us had trouble getting a diagnosis (and some of us still don't have one). Some of us have been suspected of being a basket-case of some sort. For most of us, the disease is not only invisible but variable, which is unusual as far as chronic neuromuscular diseases go! Even with the permit, I'm going to look suspicious, because I often walk normally into a store (it's getting back to the car that's the problem!).
It took me months to get myself to ask the doctor to fill out the form. I was afraid he'd say, "Well, I don't really think you need this..." That would have been devastating to me, if the one person who should be expected to actually know about myasthenia didn't get it.
I'm just saying all of this out loud (so to speak) because before I can overcome these feelings of illegitimacy, I have to put my finger on what they are, exactly, and where they come from. This forum is a huge help! Thanks, everyone, for all your support so far. It does wonders for me to be able to say, "All the myasthenics I know on-line say..." or "Everyone on the forum goes through this..." It's a huge help.
So, I intend to boldly park where I never parked before, and not give it a second thought.
Abby
|
Abby,
I got my permit very late in the game. In retrospect it was totally idiotic that I didn't apply for it before. When I was still able to drive, but not walk longer distances, I would find excuses not to come to meetings that didn't have a near bye parking lot. I ended up quarreling with one of my collaborators, because she was very cross with me for not coming for weeks. She said-"you can't be that busy" and she was right. I was too embarrassed to tell her that I could no longer walk that relatively short distance. I was surprised to see how supportive she was, when she realized what was going on. Shopping or going to museums was out of the question for me for over a year.
I applied for a permit only after the social worker in our department brought me the forms and almost forced me to fill them. I told her that I am probably not going to get it, because I can still walk on my own, and my medical letters are not very clear. I was utterly surprised when I got not only the permit, but also 100% disability. The form I got back said- "severe generalized refractory myasthenia". They didn't care if my tests were positive or negative. They were interested in my functional ability, ,and the neurologist there thought my clinical picture was convincing enough.
It was my first reality check, and also made me understand that at least part of my neurologist's ambiguity was because it involved making medical decisions regarding my care. It was much easier for the neurologist who only had to decide about a sticker on my car.
Just be glad that you often walk normally into the store, and don't feel guilty for it!
And please if you need a wheelchair, use one, before you have a serious accident. There are really nice ones that can fold into your car. And trust me it you are concerned with how you look, I can promise you that more people would stare at someone using a rollator as a wheelchair, then someone who quite naturally sits in a proper wheelchair. It took me time to understand that.
I can also understand why it is so important for you to know that your neurologist understands your illness and what it involves.
I know what a relief it was for me and my husband, when he quite hesitantly called my neurologist when I was not doing well, and instead of telling him I need an "emergency" psychiatric consult, he understood what was going on, gave him very practical advice, and even called later to see how I was doing.
Overall I can say from my experience that people understand your illness better, once you do, and come to terms with it. Most people are very supportive once they know what is going on (even if your symptoms are variable). But, are very confused and puzzled if you don't give them a clue.