I'm a long-term TM patient: 29 years this month. And for much of that
period, I wandered around in the dark the way you are now. From that vantage
point, let me offer a few comments:
First, you probably need to find a new neurolgist. I don't know exactly how
to tell you to go about that; perhaps some other folks will have better ideas.
But I will check with my neurologist and see if he can give you any pointers.
He is Linton Hopkins at Emory University in Atlanta. I only found him, by
chance, this year, but he's the kind of person you need. He makes his staff
available for questions such as yours and will give you a call back when you
need one -- without charging steep office visit fees.
Second, many people say what you gain back in your first year or so is all you
get. To a large extent that is true. I had TM when I was 5 and regained as
much as I have had since by the time I was 8. That means, in my singular
experience, you could have up to 3 years of improvement. Other folks will
tell you they got back to very nearly the level of physical ability they had
before TM. That sort of depends on your body and what the damage was.
But there are other factors involved. One is your mental attitude and another
is your continued ability to keep trying, physically and emotionally. As far
as mental/emotional attitude is concerned, you're going to have lots of ups
and downs. It is very difficult to lose something as critical as your
physical self image and to maintain a happy face. You have to go through a
period of mourning for the loss, to learn to accept what you did regain as a
gift, and to move beyond the initial phase of grief into a new mindset. You
can't always do that alone. You can use this group to help you, but sometimes
you may need other help. Look into counseling options where they are
available. If your insurance will pay, take advantage of whatever you can get
out of it. Otherwise, check into options like college counseling or psycology
department interns and public mental health agencies. Talk to your friends
and family members. And write out your thoughts.
Also, think of yourself as an athlete in training in the sport of life. You
will have to work harder than other people to do the same things and you will
get tired more easily. Some doctors will tell you you have to give up the
things you used to do. And some of the things you used to do may be beyond
your current abilities. That may change over the course of the next couple of
years, but probably not much. That doesn't mean you should give up. You
aren't a crip. You've got a lot more back than some people ever do. And you
should keep doing the physical things that make you happy. Some options are
swimming, where you won't get as tired as quickly -- heat will always make you
fatigued faster, and bicycling or horseback riding, where you can learn to
compensate for some loss of lower body motor control. I also enjoy canoeing.
Like you, I maintained most of my upper body strength. I did lose a great
deal of lower body strength and some motor control. But in a canoe, you are
mostly dependent on upper body strength and it's a great feeling to learn to
handle a canoe. Also, I find that being on the water is soothing.
Remember, you need exercise to keep from losing muscle tone. If you do lose
muscle tone, you'll find it very hard to regain. You'll also find that if you
left a very physical lifestyle to become more sedentary that you will gain
some weight. Sometimes your medicines will make it more difficult to keep
weight off and carrying around extra pounds makes you more tired and affects
your mental/emotional image, too.
Just remember, when you're working your body, you need to be sure you're
drinking plenty of fluids -- particularly water -- that you're not getting
over heated and that you plan your activities to include rest afterward. Eat
healthy. That's part of the athlete in training concept. And if you don't
feel like you can do something you planned, maybe it's not a good day for it.
That's not to say next weekend won't be better. But sometimes your body is
going to say it needs rest and sometimes you have to listen to it.
Here are some symptoms you need to understand may be part of TM, not all in
your head. Tingling or numbness in your lower extremeties. Sudden weakness
in your legs. Muscle cramps and spasms (there are medicines that can help with
that). Intermittent pain below your injury level, sometimes intense pain.
(Watch out for doctors who will hand out pain meds instead of trying to help
you. You can get addicted easily to some of them and that's very dangerous in
that it keeps you inactive and makes you feel depressed and dependent.)
Recently in this group, we've discussed ringing or buzzing in the ears and
sensitive teeth. I don't think anyone is really sure whether those are
entirely TM related or partially med related, but they seem to be fairly
common and I wouldn't have known it without this group's feedback.
The lack of bladder or bowel control may be a constant issue for you.
Self-catheterization is really a God-send. I didn't learn it was an option
until recently because I wasn't really being treated for problems associated
with spinal cord damage until recently. I think this issue is one that really
gets to your mental/emotional health more than some of the others. Learning
to understand that it isn't a failure on your part because you can't regain
full control is very difficult. Don't be embarrassed to ask your doctor or
nurse for more insight into your problems and for help resolving them. Stay
in control by learning how to function with the degree of ability your body
settles on in that area.
You may find you are more prone to urinary tract infections, especially if you
aren't getting your bladder to empty fully. I find, even with self-cath,
sometimes muscle spasms cause my bladder to clamp shut before it is drained.
That's where the problems arise. It's not normally that you didn't keep clean
enough. But my urologist's nurse told me one way to keep the bacteria from
growing is to keep the acid level up. You can do that by taking vitamin C
every day.
We also discussed recently the slow bowel issue. You may find that you aren't
getting rid of wastes as quickly as you did before. If your gut is sticking
out and you feel uncomfortably full, that's probably why. Eat fiber or take a
fiber supplement to help keep things moving. Lots of fruits are good for
that. I drink lots of apple juice to help, too. And if you're sitting there
straining and it just isn't working, try rocking back and forth. I don't know
why, but it helps.
Ask us if something is going on with you and you think it may be related but
you aren't sure. Somebody probably has had similar experiences.
On the sex issue, I think this is a pretty common issue for lots of women
who've had similar experiences to yours no matter what kind of spinal cord
injury they had. Even some women who have had difficult pregnancies and
injured their lower backs in the meantime have similar issues. You are still
a sexual being even though some of the feeling in the genital area is gone.
Since I was so young when I had TM, I don't have the same comparison you do,
but I can tell you you can still have good sex without full feeling. I think
in some ways, women are luckier than men in that our sexuality is somewhat
different. Get in touch with other erogenous zones. Also, if you already
have a partner, look into counseling and books and web sites on sexuality and
disability. Face this issue frankly with your partner and learn how to make
it better. And never ever let anyone dis you or make you think it's all your
fault if it isn't working. Try to make your partnership work on all levels.
If you don't have a partner now, don't let your own mental images get in the
way of a budding relationship. Now that's a tall order, but it's one you will
need to work through.
As to your final question: Every one of us sometimes feels like crying.
Depression is pretty common. But this group can help you with that, too.
We've all been there. As far as everyone else around you looking good and
being whole -- remember you are whole. We're all different. I don't want to
get to the cliche level because I know your question is a serious one. By
asking it, you are doing the right thing. You need to understand what is
happening to your body and to your mind. And you need to learn to recognize
some of the more destructive tendancies we all have sometimes. Don't put
yourself down and don't let anyone else put you down. If someone stares at
you or you catch a glimpse in the mirror or a plate glass window and it makes
you want to cry, you are dealing with part of the grief issue I mentioned
before. That doesn't ever entirely go away, but you have to learn to
recognize the mourning element of it, to take the mental image you want back
and can't have and hold it for a moment, then let it go. Then you have to
start to build your new image into a more healthy one.
You went through something most people don't have to face until they are much
older, but we all have to face the loss of mobility sometime. That's only
part of it. Because you did what you did and because you worked hard to learn
how to do the things you do now, you are stronger. You'll find you are
stronger than a lot of people are. Think about it. You know people who
couldn't handle it as well as you have. (If forced, most people can do a lot
more than they think they can, but you know it because you did it.) You are a
strong person and you are a whole person. You know yourself better than a lot
of people do and by working through this to rebuild your own image, you will
learn more about yourself than a lot of people ever even give themselves the
time to learn. So you are more whole -- or at least you're on your way to
being so.
Part of what you have to do now is to give yourself the private time to cry,
to pitch little fits, to feel like the whole world is against you, to feel
like kicking and screaming. But while you're going through the bad times,
keep that little voice in your head as a constant reminder that this is just a
bad day and that you deserve a little bit of grief. And keep it telling you
the next day will be better and that you are strong, you are able. Allow
yourself some bad days with the recognition that they aren't all bad. And
don't wallow in self-pity. Get out there and do something you enjoy. Make
time for yourself.
One other very important key to keep your mental attitude good is to keep your
brain busy. Find things you enjoy that don't give you a chance to think of
anything but the now. Life is good. There are so many things of aching
beauty in it. Find them. They make all the bad days pale in comparison.