As my wife heads off to go skiing today (another thing MS has taken from me), I prepare for a day of house cleaning. Whoo hoo! What used to take an hour, vacuuming the downstairs, now takes all morning, as I have to take frequent breaks to rest. And I try to get it done as early in the day as I can so I can rest in the afternoon. I’d much rather go skiing. I have seen quite a bit about these ski-bikes, which I am very interested in, which might be a way to get me back onto the slopes.
I saw a mention of Women Against Multiple Sclerosis, and thought that there should be a Men Against Multiple Sclerosis. (Although I’d prefer Men Living with MS, less negative, and more reflective of the reality.) I have not really searched for it, so maybe there is something out there. Hey, they get Terri Garr, we get Squiggy. And Montel. Maybe that’s something I need to look into more deeply.
But I have to get started on my vacuuming.
I went today to Popham Beach out in Phippsburg, and while it was a beautiful day, and the waves were very dramatic, and I was very glad to be there, and I would have loved to stay there all morning, I quickly became very tired, and had to pee, and it was all I could do to get to the outhouse and then back to the car. All I wanted to do was lie in bed and sleep. I kept thinking how much I hate MS.
Driving home, I thought that perhaps the worst thing about multiple sclerosis for me is all of the negativity it leaves me with. It is very hard to talk to people about how hard it is, when taking a walk on the beach becomes a big ordeal that I have to cut short and ruins me for the rest of the day. When people ask how I’m doing, even if they really do want to know, I don’t like to start in on how angry it makes me, or how hard it is not to get completely discouraged, or how it feels to enter into something as simple as walk on the beach knowing that it will end with complete exhaustion. I don’t know how to deal with all the negative emotion. I came home, lay down in bed, and slept for an hour. I could easily have slept all afternoon. I know that rest is very important, but I always feel like I’m wasting the weekend if I spend too much time in bed resting.
Have I mentioned lately how much I hate MS?
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.