> My doctors in the hospital were basically very good. Although, they could
> not
> give me answers to many questions. Maybe some of you have better answers
> out
> there.
> Can TM return? I have become crazy worrying about every little cough and
> sniffle. I worry that I am going to loose feeling in my legs again or
> another
> lesion will develop somewhere else along my spine. (MS was basically ruled
> out) When do I know that I am as recovered as I am going to get? Does the
> exhaustion ever abate. I know these questions are a bit simplistic, since
> some of you out there have not made as good a recovery as me, but I would
> appreciate your help.
>
> I am looking forward to being in touch. I find that people just do not
> understand how I feel or what I am going through. This is especially true
> because I am walking quite well.
>
> I hope to hear from some of you guys out there.
>
Bonnie~
Hello and welcome. As we so often say, we're glad you found us but sorry you
have TM.
It sounds like you are progressing very well. One of the frustrating things
about TM is that no one really knows how much one will recover and how long it
will take. Some have recovered almost completely, some not at all, but most of
us are inbetween. Generally it seems most people experience the greatest
recovery in the first few months, but some have continued to see progress for
years. Most of us have some residual symptoms that flare up during times of
stress, illness and such, though sometimes for no obvious reason at all. Can
TM return? Well, it doesn't usually, but a few people have had more than one
bout of TM or have progressed to MS. I know well what you are going through
because I have wrestled with that fear often, especially in the first months.
I can say from experience that when symptoms flared up, those fears only made
things worse. Now, with God's help, I'm more able to "roll with the punches"
and tell myself, "This is probably just a flare-up and things will get back to
'normal' soon." And they do. But since TM "normal" is a different thing than
it was before.
I also understand what you mean about people not understanding and thinking
you are okay because you can walk. I am in somewhat the same boat. My father-
in-law has experienced this, too, after recovering from a stroke -- some of
the family say, "Well, he seems to be getting around okay," as if that is all
there is to it and almost seem to think when he talks of having trouble with
his hand or leg that he's just carrying on and seeking sympathy. Grrr!!!!!!!
That is one of the ways this group has been a blessing, to have folks to talk
to who KNOW how it feels. Yet I think it is also important in a matter-of-fact
way to let people around you know that you have continuing problems. For
instance, if you are asked to take on something extra at school, feel free to
say, "I'm sorry, I just don't have as much energy since my illness, and I just
couldn't handle it." We recently moved to a new area where, of course, I'm
meeting new people and getting into new situations and having to explain
sometimes what I can't do. I was just asked at church to work in the nursery,
and had to decline because the last church nursery I worked in, I fell --
thankfully not on some little child, and thankfully I wasn't holding one at
the time. I haven't fallen often, but I don't want to chance it in that
setting. Plus I have some weakness left in one arm that makes me really
nervous to hold babies. So I just told the lady that I had a neurological
illness a few years ago that has left me with a few problems -- I explained
about falling before -- and said I didn't feel I should, and she understood
and was very nice about it. I don't bring it up right off the bat, but if the
need arises I do, and then if the person asks, I'll explain it a little more.
It makes things a little awkward, but most people are understanding.
Well, I have taken to rambling, so I'll stop and send this off. Keep us posted
on how things go, Bonnie, and feel free to write and ask questions or "vent"
any time!!
Barbara H.