You know, I’m really not a negative person. It is hard, tho, to write about multiple sclerosis and not sound like a realy downer. And I don’t dwell on it, I think i’m doing pretty well- still working full-time, walking and talking.
I don’t dwell on it, but there are instances thru my day that remind me – when I get up out of my chair and have to reach out for the wall to steady myself before I walk down the hall, or how sometimes it takes me a few minutes to get going at the urinal, or when I can’t remember something I was just about to write down so I wouldn’t forget it – that everything is not right in Brain-land.
There is suspicion about several MS drugs, and now I read about people in England taking serum from goat blood and showing remarkable results. I think the drug companies should release the results of all of their studies, fully inform doctors and patients, and let them make their own decisions.
A little scattered today.
It really is remarkable what you can find in your own driveway. I think I already posted this image, but I just did a whole reorganization of these images (I was getting scattered, storing images on two different servers, Flickr and Photobucket, and decided to consolidate them all onto Photobucket. Which meant that the urls for every image was changed, so I had to go back and repost them all here, so I got a little messed up. What a pain.)
I have also discovered the pleasure of being able to update this site from work. I took a few minutes this morning to add some links, and I’ve been able to add a daily entry here and there from work. Now that I have a good stock of so-far-unposted images on Photobucket, I can do that more often, when I am feeling tired at night.
I am going in for a sleep study, to find out if I have sleep apnea (I’m sure I do), which I am hoping has a lot to do with my not feeling real sharp most of the time. CPAP, here I come!
Now that (maybe) spring is here, a few last ice images.
I’m tired, maybe a hangover from a weekend away. The thing about multiple sclerosis is that I’m always second guessing. Is it the MS or just normal life?
I got a book about yoga from the local MS Society chapter. It sets out a week-by-week course, which looks pretty easy to fit into my busy (ha) schedule. We shall see.
A rare bit of blankness in a shopping zone.
I work for a company that makes down comforters, pillows, sheets, etc., and there is usually a sample bed all made up in a back room. When MS fatigue is most powerful, it is hard not to sneak off for a little lie down. On those days, I usually drive to Payson Park on my lunch break and take a nap.
Not quite as rejuvenating as a featherbed and a down comforter might be, but better than nothing.
I have been enjoying watching The West Wing on TV, partly because the president is living with multiple sclerosis. I think the writers handle it very well, not making too big a deal over it, allowing it to just be a part of his life.
Even fat bald old lions still need to roar. And where better than in the Maine Maul.
Multiple sclerosis is a weird disease. It sometimes shows up in devestating ways, bringing near-complete disability, sometimes it is nothing more than the strange little tickle that’s been creeping around on my right leg, a feeling as if there is a bit of celephane tape stuck there. Strange.
In what feels like some sort of surrender, I asked my neurologist to start the paperwork to get me a handicap tag for my car, the kind that hangs down from the rear view mirror. It has not happened often, but there have been occasions where I’ve cruised a parking lot, only to have to settle for a space far from the store. Like with my snowshoe trek from last weekend, it can feel like I’m climbing Mt. Everest. So, OK, I guess in maybe a little way, I’m disabled. There, I said it. Doesn’t really feel very good though.
It’s funny though, how through difficult times, good things can happen. I’ve met some interesting people, both for real and on-line, and opened up some deep conversations that never would have happened were it not for multiple sclerosis. There is always a silver lining.
After a few days of almost balmy weather, I’m starting to beleive in spring again.
I am collecting pledges for my MS Walk in Brunswick, Maine on April 6. If you’d like to make a pledge, go here, click on the “e-pledge” button, enter my name (Stephen Harris), and click on the “e-pledge” button again. Your support is greatly appreciated. If you think you might be in Brunswick on the morning of April 6, we’d love to have you join us for a stroll.
I’ve been feeling more stiff and creaky than usual these last few days. At first I thought it was payment for my exertions over the weekend, but now I think it is due to my laziness. I used to get up at 5 every morning, do a bunch of MS-adapted yoga, or some tai chi, maybe some MS specific stretching prescribed by my osteopath.
But I’ve been lazy, and choosing to sleep an extra 45 minutes instead. And feeling more stiff and creaky than usual. Multiple sclerosis rears it’s ugly head.
So I did go out into the woods yesterday, and it was truly wonderful. The best word I came up with was “astonishing.” I started out, and thought how easy it was, how foolish I had been to think that this was so difficult, and I had a wonderful time. I was very glad, tho, that I had thought to bring the walking stick that Ben had made for me, because I stepped into some sort of sinkhole, and sunk to my hip, and were it not for the stick, I’d be there still. The snow was easily 3 feet deep, beyond the reach of my arm.
I found that all my familiar landmarks were gone, so my goal of the bench in the Peace Garden was not to be, and when I noticed the land begin to fall away down the hill, I realized I had way overshot the garden, and it was then that I started to feel a little tired, and the thought occurred to me that maybe it had been a mistake to come this far out into the woods. The walk back was like climbing Mt. Everest – one step, stop to rest, another step, stop to rest, with occasional longer pauses to try to flex my sore back. Then I saw the house, and eventually made it to the back steps, got the snowshoes off, the boots off,(best boots in the world!) and crawled thru the door to sprawl on a chair.
It was hugely exhausting “walk,” but well worth it for the experience of such a magical place. It was discouraging only in that it was so exhausting. And tho I implored my family to go out and see for themselves, none of them did. Too bad.