2007 July - Experiences

My own experiences with Multiple Sclerosis..:
I understand it this way:
MS is simply just an inflammation of nervs in the brain and spine. That injures the covering of the nervs. If the nervs are hurt, depending on which location, it takes impulses longer to get anywhere in the body. Everything slows down basically.
So depending on which nerv is injured, the body has problems with for instance the sight, the speech, the memory, sleepiness (fatigue), feeling/touching, bladder, and all of ones extremities.
In my case it occured in autumn 2005, that my whole right arm turned numb all of a sudden, from the fingertips up to my shoulder. It felt as if my arm fell asleep, but that wasn't so, and it didn't get better. I kept on working for another 2 weeks, before I decided to see a doctor.
I knew this tingling sensation from earlier on, but before I really recognised something was wrong, that tingling, funny feeling on my skin would go away. And I always had it on body parts that weren't that important, like one half of my behind, or on my stomach, or on my thigh. I mean I could still walk then, it just didn't feel normal when I touched the skin of the other thigh for example.
It must have started in 2003 I suppose.
So this time it was serious, I went to plenty of doctors, and none could really help me. We tried several treatments, and at the beginning it seemed to help, but then it worsened. At the end my arm was just hanging on my body. I couldn't write, couldn't comb my hair, couldn't use flatware (no spoon, no knife, couldn't hold it), and finally I ended up not being able to wipe my own butt.
To shorten this a bit: I was told I had a tumour in my upper spine, which would be dangerous to operate. If they'ld do that I could have ended up in a wheelchair if something would have went wrong, plus I would have been hooked up to a lung machine, my lungs wouldn't have been able to work on its own.
With this scenario in mind, after having settled all my belongings and paperwork (child custody, legacy, patients decree) I had to stay at the hospital.
Being 39 years of age that isn't to much fun, I tell ya! That are plans for being 60 or 70, but not being that young!
Soon a neurologist found out that it's "just" MS. They put me on Cortison right away, the inflammations softened a bit, all of a sudden I could move my arm again! What a delight! After 3 weeks at the hospital I was sent into a rehab program, which worked out very well.
The complete feeling never returned in my right hand up till now, but oh well.
Thanks to all that my boss fired me with some excuses, I fought a long while against him, lately I could have went to court to fight him further, but I'm so tired of all that. I didn't even get a good reference from him. As if I got ill on purpose! Anyway, he had to pay me some money, at least that hurt him in his pocket, and I trust in God, he'll pay them back somehow. Even the law is on my side, so not everything is as bad as it looks like.
All that stress made me have another "push", how they call it. My left leg "fell asleep". But this time I went to the doctor right away, got my Cortison, and it got better. That was Christmas 2005.
I found me a new doctor in January, a neurologist, and she put me on daily prophilactic injections. Which I take since then, plus some pills to balance what I mess up with eating wrong things, or not enough things like vitamines.
Now I have to explain something about MS again: it basically is an auto immune desease. That means, that as soon as I should catch any bacteria or virus, my body doesn't fight them, it starts fighting the myeline (the covering of the nervs) of my own body - IT STARTS FIGHTING ME. And what the daily prophylactic injections do, is simply that they program the brain for 24 hours to fight against the intruder and not me.
I had to cope with all of this, and because it's so hard to get a psychiatrist in Germany for things like that, I let it out somehow else: I wrote a book. Oh well, I'm just one of 30 co-authors of that MS book, and one of 3 lectors, okay, but I wrote a book. We promoted it last summer. I don't get a dime out of it though =(
Sure, I have something they call the "Uthoff phenomenon", which means, as soon as I heat up to much, or have too much stress my symptoms worsen or return. But this I can handle, and I can live with the side effects of the injections, too.
Every day is different for me. Getting up I have to check how I feel first, before I can plan the day. In the meantime I had a second rehab, they've tried to send me back to work. But my energy level shrunk down to less than 3 hours a day, so it was decided to send me into retirement. Luckily I was insured against things like that, which doesn't make me a rich woman now, but I have a better income now, than back when I used to work fulltime!
My next blurb will be about the various symptoms.
I feel good, one can't tell I'm sick at all, I minimized stress, ok it's not that tidy in the house anymore, because there's a lot of things which just exhaust me too much... But... I have two busy helpers here =)
I love my life, I found my way back into faith (I just loove Joyce Meyer, wished I could see her live in July in L.A.), I made peace with my German family, I found out who my real friends are, and dissociated from the other ones ;-) Found new friends through my illness.
What more can you want in life?