Category: multiple sclerosis
Swim or Bike?
Way back when, it was kindly pointed out to me that it’s hard to have MS, a full time job, and an exercise program.
Well, I don’t have a full time job any more, so it’s time to get cracking.
I’ve been either pushing the wheelchair or hand cycling several times a week for almost two years [...]
Multiple Sclerosis & Exercise
When I started exercising, I didn’t really understand very much about the relationship between heat and fatigue (and other increased symptoms), so I went hunting for more information. I’ve now started to accumulate a list of resources about MS and exercise, and thought I’d share them here:
Multiple Sclerosis & Exercise Resources
Karen Stone
I was dismayed to read of the death of Karen Stone in this month’s New Mobility (and surprised that I hadn’t heard already).
Karen Stone, who used illness and writing to teach, dead at 62:
“She wrote about it (having a disability). It was a big thing when she was writing. She wrote about it as a [...]
(Full Post)Multiple Sclerosis Postcard Blog
Multiple Sclerosis Postcard Blog - some serious talent out there:
Image description: a postcard. The background is a few strands of grass with drops of water clinging to them. A picture of a Drill Sergeant’s hat sits at the top. The words read:
I have become my own drill sergeant
Calling a cadence in my head
one step
no [...]
Ugh
What a depressing week. I’m not sure I should even write about this.
My various bosses and my husband all worry that work is too taxing, and this week was the poster child for that point of view. Every day was worse than the one before it. I managed to completely blow away the development environment [...]
Trite
Phrases I don’t ever need to hear/read again:
But you look so good!
I have MS, but it doesn’t have me!
I’m gonna beat this thing!
You either give in…or fight it. I’m gonna fight it!
It’s all in the attitude.
Don’t you worry—a cure is around the corner…look how far they’ve come with cancer.
You’re still walking though, aren’t you?
It [...]
Jinxed
It’s a freaking jinx. Everytime I write about how well I’m doing, I slide back. Remind me never to say anything about it again.
(Full Post)The Trouble with Remission
There’s no trouble with remission. Remission is a wonderful thing.
The interesting thing about remission is that there’s nothing to write about. Life is so much less irritating when you can walk and see straight, and don’t have to spend 10 or 12 hours sleeping.
Going to the Deep Impact party (hundreds of people crowded into two [...]
Concert Report
I went to work in the morning. I got home about 2 pm and took a nap. Unfortunately we’re having a sudden hot snap - two weeks ago it was snowing, yesterday it was 95 degF, and nobody’s ready for it. My bedroom is the hottest room in the house, and when I woke up [...]
(Full Post)Today
I went to work. I had my mid-year review (apparently they still like me). I went to the library for lunch, loaded all my books into my backpack, started crutching into the library, lost my balance and fell over backwards (onto the backpack, not my head). Unconcerned strangers walked by. Two concerned strangers helped hoist [...]
(Full Post)Taking it easy
I sewed buttons on my son’s concert shirt (you know those super-cheapie shirts where they don’t knot off the buttons, and all you have to do is tug and the whole thing unravels?), but that wasn’t super successful, between the lack of fine motor control and the slightly wonky eyesight.
Then I slept.
I’ve just taken a [...]
All right
Fuck this! Fuck this precipitous, disastrous descent into disfunction.
It’s like I can’t even think anymore. Everybody around me has speeded up double time, there’s no way to catch up.
Tantrum
I know exactly how stupid what I am about to write sounds.
Jody is right. I am doing too much.
I don’t want it to be too much. I want to do all the things I am doing. I want to help with the remodeling, to tile my own bathroom and paint my own walls. I love [...]
Remission bubble burst?
A bad day: vertigo, foot drop, exhaustion, a frightening inability to remain upright in a chair, a definite tendency to fly off the handle (somehow a work day ending with me in the program manager’s office at 5:15 telling him I’d like to slit my throat has a certain je ne sais quoi). Stay tuned.
(Full Post)Bummer
Anti-disability poster boy Clint Eastwood got four Oscars.
Just as I was getting sucked in, distribution of Tysabri was suspended (how many different emotions can a person have in 30 seconds?).
We’ll have to see what other fun stuff is in store for today.
Elocution
Today:
Saw an acquaintance from a distance at lunch. As he passed me, I said, “Back to work?” He stopped, looked me over carefully, and asked, “Did you just call me a dork?”
Went to the high school for the talent show. Parent-teacher conferences were yesterday. I greeted the orchestra teacher with, “I heard you had a [...]
Walking Upright
Second day using crutches at work. Wow, I’m tall! Wow, the ceilings are low.
I’m wearing walking clothes (as in, I have walking clothes and sitting clothes - walking clothes include looooong jackets and pants that are the right length).
Many coworkers telling me “Glad to see you up again”.
Migraine, MS
Bad things starting with “M”?
What this migraine lacks in ferocity, it makes up in length (three days so far) and general ugginess (is that a word)? Using crutches exacerbates my already very painful neck and shoulder muscles.
Anyways, bitch, moan, whine, etc. It’ll be better soon (she says hopefully).
Sleep that knits up the ravell’d sleeve of care
Stand down from red alert — fourteen hours of sleep have improved the hand situation noticably. This is good.
(Full Post)Oh, no, not the hands!
Couple of weeks ago, I started feeling very, very perky. So perky, in fact, that remission seemed to be in the air. And so it was. I’ve been leaving the wheelchair in the car and using crutches in the house. I even walked up and down the stairs a couple of times.
Then came Christmas Eve, [...]
West Wing, II
I’ve now seen “In the Room” (getting ready for China trip) and “Impact Winter” (China trip). Yes, there were some stupid things. Having the Surgeon General say that losing the use of your hands is like having a headache — deeply stupid. But the essense of the statement — you’ve lost functionality, what are you [...]
(Full Post)West Wing
I haven’t watched West Wing for several years. Now I belatedly realise that I probably should have watched the last three episodes (the president’s MS kicks in with a vengeance). Anybody know when it goes into re-runs? I don’t have cable.
(Full Post)Falling
I was talking to a guy with MS recently. He maintains that if it’s one of those split second terror things, it’s a fall, but if you sort of slide down to the ground in a controlled fashion because you don’t really have any other choice, it isn’t. His home health aide maintains that any [...]
(Full Post)Dress or Eat?
I’ve got an all day dress rehearsal tomorrow. We’re breaking for lunch at 12:30 and have been informed that we must change out of costume to eat - “no exceptions!” I’m not sure I can cope with two full clothing changes in a ladies’ room, so maybe I won’t eat. Another stupid idea. Maybe [...]
(Full Post)Very Little Candle Left
I’m tired. My candle is pretty much gone.
Note to self: next time somebody asks you to do something extra, say no.
I’m off to Lynchburg VA tomorrow, via Charlotte. I’m worried about getting out of the house by 5 am. I’m worried about my connection. I’m worried about getting my wheelchair back in Charlotte. I’m worried [...]
Moan
It should be against the law to have MS and migraines.
(Full Post)Finding time to exercise
My Beloved and I went to the Rec Center over the weekend to play with the weight machines. I could barely do a leg curl, even without weight, but I could row at the highest resistance for ten minutes.
My Beloved believes (or tries to believe) that whatever ails a body can be cured with exercise. [...]
How to Help Someone with MS
I came across Erik’s MS Blog via mdmhvonpa (someday I’m going to have to figure out what that stands for so that I can remember how to spell it - all I’ve got so far is that I think “pa” = Pennsylvania).
Erik’s postings reveal how very consuming an MS diagnosis, the symptoms, and the treatments [...]
Woo-hoo!
I managed a half hour of weeding in the hot sun before collapsing on the field and being dragged off by my daughter. I must be going into remission.
(Full Post)Stress and the English Language
Stress makes Multiple Sclerosis worse more evidence
I would have titled it “More Evidence that Stress Makes Multiple Sclerosis Worse”, or maybe “Stress Makes Multiple Sclerosis Worse: More Evidence”, but what do I know?
Entitlement
Why would a highly paid, highly educated scientist with MS be using a clunky 50 pound depot wheelchair that is difficult for him to push and clearly doesn’t fit him?
Because he got fed up with the roadblocks his insurance company put in the way of getting a properly fitted lightweight chair, and in a magnificent [...]
Isolation or Freedom?
Isolation or Freedom?
I personally, made a choice to use a wheelchair to continue working and to liberate me from the bondage of my fatigue and weakness I experience everyday.
Perceptions of My Seated Life
I may have an illness, but I certainly don’t feel sick. In fact, I feel quite well, thank you!
Both articles by Thomas R. [...]
Which Came First?
The immune response or the myelin deterioration?
New Data Challenge Theories of Multiple Sclerosis
Disclosing
CNN.com - Comedian turns multiple sclerosis into a laughing matter - Oct. 10, 2003
One of the reasons I disclosed my condition is because it is much easier to live with MS than to pretend you don’t have it. If I could convince everyone of that, my job here is done.
And the Living is Easy
Still working on the wireless problem - I’ve moved everything pretty much back to where it was and upgraded the firmware on the wireless access point, and now I’m worse off than before - the computer has trouble even finding my access point. I did get a really long Ethernet cable, though, so that’s easing [...]
(Full Post)Being Julie Andrews
or, trying to be normal.
Tuesday I had choir rehearsal at 6:30, so I just went straight from work.
My leg was so spastic it was getting painful to sit up, so I laid down on one of the benches that are scattered around the room, held my music in the air over my head, and tried [...]
Falling
One of the bizarre things about MS is the variability. Some mornings I wake up, push the covers off, scoot over to the side of the bed, pop into the wheelchair (no problem!) and head off to the bathroom.
Some mornings I wake up, push the covers off, try to sit up, collapse back onto the [...]
Walking on my Hands
My shoulders hurt. And my arms and hands are numb and tingly. My wrists hurt, too. This is Not a Good Thing. As a wheelchair user, I am essentially walking on my shoulders and arms. I use my shoulders to shift in bed, to transfer into the chair, onto the toilet, in and out of [...]
(Full Post)MS Websites
In response to a recent post on Wheelchairjunkie I’ve been doing some surfing looking for good MS info, which I haven’t done in quite a while. I’ve revisited some good websites and found some great new ones:
Multiple Sclerosis Sucks - very candid personal examination of many aspects of MS. The author warns that it’s strong [...]
Relapse
Maybe I should just pile up a bunch of empty journal entries: relapse, remission, relapse, remission, relapse…
On the other hand, it’s better to have remitted and relapsed than never to have remitted at all.
Started getting more wobbly last week, did the cane, no cane, one crutch, one crutch and a friend, two crutches thing until [...]
Remission!
I’ve waited a couple of weeks to write anything about it, kind of for luck. It’s so amazing what you can get accomplished when you can walk! Today I washed my very own car for the first time probably in a year. This is great. At work I’m not using crutches but am lurching from [...]
(Full Post)Relapse
Man, big relapse. Haven’t been able to stand without assistance since last Saturday, which means no standing pivots, harder transfers, over an hour to take a shower and get dressed in the morning. Trying to do the good spirits thing. I think I’ll have to take a couple of days off from work; I slept [...]
(Full Post)Catching up
Whoops! I must have taken the summer off when I wasn’t looking! I’ll try to catch up.
On the house front, we moved in June. The new house is still not accessible, but we think it will be easier to modify than the old house. It’s much closer to grade (14″ vs more than twice that [...]
Falling down
Got up this morning feeling pretty good. Didn’t use the shower chair. After my shower when I was wiping down the walls I tipped, smacked into the wall, fell down, hit my head. Great way to start the day. When I tried to get up, I couldn’t. I had this horrible squeezy feeling all around [...]
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