2008 January - Me and my MS in 2007

For those of you, who know me, or for those who are familiar with Multiple Sclerosis this might be boring to read, but for all others, and myself I wanted to put it down (black on white sort of speak) really which troubles and side effects I was confronted with in 2007 (and a little bit before, and a little bit ahead that time). If you've ever scrolled through all my blogs you know it all anyway…

As I wrote in those blogs: you won't be able to tell I'm sick, or retired by just looking at me. When I feel bad due to any health issues, I stay at home in the first place. So yes, MY MS treated me kind this past year. And I'm very happy and content about it! Thank God!

But 2006 ended with incredible itching all over my body, wherever I could lay my hands on… I scratched… to a point where I had eczemas all over the place. This led me to a skin specialist in January 2007.
This doctor denied that the itching sensation is due to the Copaxone I have to inject myself everyday since January 17th 2006. It must be my nerves (haha, sure it's my nerves, hello? I got Multiple Sclerosis, a nerve disease!), I should take more care of calming down, stress less, relax and stuff. She prescribed tons of oily shower stuff, body oil things, pills and ointments against itching and so on.
Well what can I say? It took a couple of months to go away, but I never had to see that doctor again. But… the year ended with 12 eczemas at the time. Every time I get tense or nervous, or forget to cream and oil my body I start scratching again!
So, no, you can't see that, no, I still look perfectly healthy, do I?
:(

I also ended the year 2006 with heavy, heavy menstrual bleedings. Actually it started in May 2006, and lasted all the time through to spring 2007. I saw two different gynaecologists in the meantime. Those bleedings lasted 3 weeks at times. Days where I needed tons of 'diapers' ;-/ and it still went through. I had a hard time just living. Sitting was a hassle, standing up, or climbing stairs, or laying down, having to get up from sitting or lying down… a pure torture. It feels like you're a water faucet, it's just running out of you like pee… Sorry guys for having to read this, but it was real, one couldn't tell that there's something wrong with me by looking at me, you're right. I looked and acted totally normal, although I would bleed for weeks in a row, have like 7 normal days in between, and start my period again. For those of you who didn't know, yes, we are still TTC (trying to conceive), and as you can imagine, this way… it just won't work.
And again, that one doctor said that it's not from the Copaxone I'm taking on a daily basis. It must be my weight. (!) Sure, if I'd be smoking they'd say it's that, and if I'd have an alcohol problem they'd say it's that, right? :( So guess what? I changed the gynaecologist. The new one, got my hopes up again on getting pregnant, no matter what age, weight, or illness I have. I just love him! He gave me something to finally stop the bleeding. I had to start taking the anti baby pill for 6 months again, until my period was on schedule again. And it worked. For 4 months.
2008 now started exactly on the 1st with heavy, heavy, heavy bleeding again, all the time during our ski vacation, until today. That's why I went to the doc again. He's trying to 'reset' me, like a computer, so I am 'bleeding out' right now. I don't even recall through HOW MANY packs of Camelias I went at the moment, and there's more to come.
But then, so he said, we can 'work' on the baby issue again… ;-) And if that doesn't work out until I'm 45 (I said so) he can help me with hormones to work on my weight issue. A nice guy that doc, I really like him.

Cognitive deficits it's called in German. That's bugging me a lot. Which means, I can't concentrate, I can't focus, can't remember things, even after hard thinking things don't come back to mind… I overhear things said. So with all my important errands to run, or appointments to make, I'm accompanied by my boyfriend. He's my brain then, sort of speech!

When I worked fulltime, back in 2005, before my retirement, I did laundry on Friday afternoons. Three to five loads per week. Nowadays it is a big accomplishment to do 1 load per day (skipping the next day, doing the next load the day after that one). Why? Because it means having to climb stairs (from the cellar to the 2nd floor) 6 times! The problem always is the downstairs.
But guess what? After our vacation at the beginning of 2008 I have all the energy in the world, I can walk, concentrate, and the fatigue seems gone (extreme sleepiness due to MS, loss of energy, which can't be compensated through lots of sleep or relaxation before hand or afterwards, one is tired like normal people having worked 24 consecutive hours). It might have been the ajurveda- (hot oil) or acupoint-massages (acupressure/stimulation of energy points of the body) I've been getting, or it might have been the refilled iron I had to take in because of the high blood loss, I don't know, but I sure feel good!

In August 2007 the MS-hug struck me. I wrote a whole blog about it, called 'pain'. Please go ahead read it. It was awful, frightening, terrible, exhausting. The most painful experience I've ever had in my life, except giving birth! To me the MS-hug feels like I'm in a vice-like grip, as if an elephant sits on my chest, and I can barely breathe.

It all came and went, either single, or all at once, or accompanied by other things like…
burning sensations of the feet, flush of the face, my legs would just fold like a knife during walking, diarrhea, loss of bladder and bowel control, hurting knees, headaches, neck aches, vomiting, numbness of various body parts, tongue twisters (speech problems), sight problems (had to see the eye doctor, got eye drops now for irritations and such problems. He too said, it's not from the Copaxone, although the accompanying medication slip says so…), walking troubles (a walk like drunks have), sleeping problems, problems swallowing, extreme heat sensations (a lot!), and then being extremely cold, problems with circulation. Just take a pick.

I am diagnosed with MS for 2 years now (I might have it for 3-5 more years, we just don't know), and in my eyes it seems, as if we two (the MS and I) get along very well now. I know how to handle all these problems. My household may look like a mess at times, but I know for sure that the illness paced me down to a level we can both live with, to a level where I don't have fresh flare ups, or new inflammations. I take my daily shot of Copaxone, treat my body accordingly to my side effects or troubles, relax a little bit more, and we're just fine, to the point where people say…
"But you don't look sick!" (One of my favourites…).

And now I don't want to think about being ill any longer. Like my doctor put it the other day, when I said that I had a good health year 2007, he didn't respond he'd expect this year 2008 to be alike, but replied: "Then I wish you a much better year, and improvement of your health!".
Let's just leave it at that.

Hopefully I can be an inspiration to all my MSer friends out there, and to all you others being sick, or knowing somebody ill. Just because we don't look troubled, doesn't mean we are in perfectly good condition or shape or health!

For 2008 I wish for all of you
my friends & family & for myself:
lots and lots of health!