3.08.2014

Running running running, or how MS can act like a bull(y)

I've been hearing about this young lass, Kayla Montgomery, who runs like the wind. She has MS and because of this, as she runs, her body temperature goes up and she has what the docs like to call a "pseudo exacerbation" - her legs lose all sensation and she feels no pain as she pushes herself to the max.

So she can run very very fast, whereas other girls running hear their muscles screaming "no more, no more."

I'm happy for her, I'm glad she's having a good time and fast runs, but I'm a bit afraid for her, too. Our bodies feel pain because they are warning us of potential damage. If she can't feel anything, and loses all ability to stand at the end of her run, is she doing her limbs harm?

I know what I'm talking about. I used to go swimming three times a week. It was wonderful exercise and I found quickly that I could swim 20, 30, 40, 50 lengths of the pool. See, my heart and lungs were okay, and the rest of my body went numb shortly after the tenth lap, so I was in bliss as I swam back and forth and back and forth (and back and forth).

Until I tore my rotator cuff muscle. I've been going through months of physiotherapy and it still isn't better, had cortisone shots and I still can't lift my arm up over my head without pain. I damaged it by overdoing it (I never could swim 50 laps even when I was a KID) and didn't even notice.

Now fortunately, I am numb generally anyways, so the pain in my arm is negligible most of the time. When I feel it, I know it remains damaged. I never know when I will feel it. Sometimes I think it's better and I exercise using it, forgetting that it is still not right, and I end up the next day unable to put my coat on.

So that's why the picture of the bull goring the man...or as mums used to say, "it's all fun and games till someone loses an eye."

I think exercise is fabulous for MS. In fact, I think it is the only true thing that works in MS in terms of delaying progression and keeping able. I'm even attempting self-immolation by trying the Bluenose Marathon in May - a 5 km walk, just me and my Nordic Poles or rollator, followed by the MS walk the weekend afterwards.

I know I'll pay, I'm hoping for the aforesaid numb legs so I can do it without too much agony, but I'm 55. I'm perishing anyway, bits wearing out, stuff falling off.

Kayla's just a young thing. I hope someone is looking out for her, really looking out for her. She's far too young to end up damaged.

2.06.2014

Once more into the fray, my friends...

May seems terribly far away, as I sit here gazing out at piles of snow and the deceptive sun that hides a freezing wind. But it's slipping up on us...
I'm doing the MS walk in Halifax again this year - I usually volunteer to help out with registration and then haul my sad legs around the route as well. Hoping I can still do that this year.

In honour of the walk, and of my father, who knew how to make every day something worth living, I herein record the joke he used to tell that always comes up in my head when I think of my draggy legs...

Harry kissed his wife and went out for his usual foursome of golf one sunny Saturday morning. When he returned, many hours later, he looked awful - sweat streaming off of him, brambles in his hair, muscles spasming as he walked.
He came in and crashed in the first chair he came to, begging his wife for a drink of anything, anything.
"My gosh, Harry! What happened to you? You look exhausted!"
"Oh it was terrible," Harry said, mopping his brow.
"It must've been. What happened?"
Harry took a long sip of water from the glass. "Well, everything started out fine, me and the guys, gorgeous day, though a bit hot, if I was going to complain...and we'd just started off. Had to wait for the first tee - busy as hell out there today."
He gulped more water.
"Then, we got to the second hole, and doesn't Ralph just up and have a heart attack right in the middle of the fairway! Dropped dead right in front of us."
"Oh no! How horrible," his wife said.
"I'll say. The rest of the eighteen holes, it was hit the ball, drag Ralph, hit the ball, drag Ralph..."


I'm looking for sponsors for my walk - if you'd like to sponsor me and Ralph, please go to my personal page for the MS Walk.  I'd really appreciate it!


1.18.2014

What now?

So here I sits, like the cat videos, me in a box. A box made of certain limitations, certain walls, some openings, some slides and ladders.

I'm not limited enough that most of my day is spent dealing with my MS, and for that I am absurdly grateful.
I AM limited enough that a large proportion of my day is affected by my MS, and for that, well, I am grumpy.
I have had to retire, from an interesting and challenging career. I left work at 50, after staying home with my kids while we moved around for years for my husband's career. I don't begrudge staying home with the kids. I don't even begrudge moving around. But I feel as if I haven't had a chance to show my abilities yet. It's frustrating to get to a place where things were interesting and then find myself unable to do them anymore. And five years in, I'm starting to wonder what lies ahead.

I had a lot of fun working, using my creative mind on problems. I made a lot of mistakes, I had a few successes, I LIKED it. And then I couldn't do it, I couldn't remember what I was doing, I was so tired I could barely walk, I became hyperemotional and had a breakdown from the disease.

It's more common than you at first hear. I should have known, when I was diagnosed with depression, that my brain was wearing out. I've never been depressed in my life. Until MS came along. Now it's something I battle daily, along with fatigue and pain and decreased mobility.

But I'm young yet. I'm just 55. With luck I have another 25-30 years ahead of me - to do WHAT? There are only so many crafts. I've tried writing, I don't have the mental stamina for it. I volunteer, and I can continue to do that, provided I can have a nap regularly. But is it enough?

I don't know. I search on, looking for some way to make some sort of contribution.

11.20.2013

Sometimes, serendipity is a scary thing...

I took nursing back in university. My favourite favourite class was microbiology, so much so that I often wondered if I should have hung out there instead of going on to be a nurse.

We had a great prof, who would spice up his 8:30 AM lectures (with many many slides) with unusual pictures,  beer tasting, jokes, and other things that actually kept us awake despite the early hour and the darkened classroom.

My favourite bacterium was Clostridium Perfringens, primarily because it is the cause of the nauseating-sounding gas gangrene. Plus it also hangs out in gut bacteria and leads to food poisoning. 

And it has a cool name.

From Wikipedia:
Clostridium perfringens (formerly known as C. welchii, or Bacillus welchii) is a Gram-positive, rod-shaped, anaerobic, spore-forming bacterium of the genus Clostridium.[1] C. perfringens is ever present in nature and can be found as a normal component of decaying vegetation, marine sediment, theintestinal tract of humans and other vertebrates, insects, and soil.
C. perfringens is the third most common cause of food poisoning in the United Kingdom and the United States though it can sometimes be ingested and cause no harm.
Infections due to C. perfringens show evidence of tissue necrosisbacteremiaemphysematouscholecystitis, and gas gangrene, which is also known as clostridial myonecrosis. The toxin involved ingas gangrene is known as α-toxin, which inserts into the plasma membrane of cells, producing gaps in the membrane that disrupt normal cellular function. C. perfringens can participate in polymicrobialanaerobic infections. Clostridium perfringens is commonly encountered in infections as a component of the normal flora.In this case, its role in disease is minor.
The action of C. perfringens on dead bodies is known to mortuary workers as tissue gas and can be halted only by embalming.

It's a nasty bacteria with a nasty name that rolls off the tongue in a most satisfying way. Imagine - GAS gangrene! It sounds like something out of Harry Potter. I adored it, I loved saying it, I think I even cultured it in the lab.
And now it turns out it may be one of the causative factors in MS:
Of course, early days yet, and I still think Epstein-Barr has the greater role, but I think it's rather amusing that my favourite bacteria might be the cause of my illness.
Of course, I do have holes in my brain, so perhaps I'm not thinking properly about what is funny and what is not. But c'mon, say it with me:

Clostridium Perfringens!

On the good side, every discovery is another step closer to treatment and cure. But maybe, just maybe, first year microbiology students shouldn't be culturing this creature.

11.18.2013

Montel Williams and the whole MS thing

Normally I am resistant to the whole "I'm a celebrity and I'm suffering with a disease and therefore I can tell everyone else how to live" deal. That started with one of the first books I read about about a celeb with MS who talked about how she had to get her chauffeur to drive her closer to places and how the nanny had to take more hours with the kids, etc. I just don't think the whole illness experience is the same when you can afford multiple live in help people and vacations whenever you want as it is for we regular folk.
Oh and let's not get started on the MD on call thing…
But Montel Williams seems somewhat different. Yeah, there's all this "I feel good" stuff about how MS will "never have him", but most of what he posts seems to be reasonable, and he seems to follow the research, taking the effort to review CCSVI and denounce it for the fraud it is.
On the other hand, he's pushing outrageously expensive multivitamins with mystical ingredients and whopping doses of Vitamin B, and I'm not too sure about all that stuff.
I'm glad Montel can exercise and keep fit and chat with all the experts and all that but his website seems to be pretty much the same stuff you can get from the MS Society (Except they don't push supplements or Fampyra). He might be able to help keep you motivated to exercise (which I think is le plus ultra treatment for MS) with cheery let's go messaging and he is, let's face it, a kind of handsome guy, so not difficult to look at - so if you think he'll help, go sign up for his program.
If you do, let me know what you think. Does he make any sense?
Or is he another very rich guy with personal trainers and cooks who lives well with MS because he can hire everyone to do everything for him?


http://www.livingwellwithmontel.com/Healthy-Living/MS.aspx

11.13.2013

Numbness and by the way, will I notice sex ever again?

I'm sending out my book proposal for the MS and Intimacy book sometime next week. It's sort of funny, because right now the only intimacy I have is with my new adopted cat, who comes over and kneads me.

But all I can think of is the line from "The Truth about Cats and Dogs", where the vet is taking calls from the public on her radio show, and this guy calls in and says his cat likes to lick him and keeps doing it and he seems to have developed a rash (location unspecified). The vet, Janeane Garofalo, says, "You can love your pets, but remember you can't LOVE your pets."

Still, it's nice to be kneaded. As it were.

Meanwhile, numbness continues. If I weren't such a chicken I'd attempt cutting just to see if I'd feel that but heck, I'm in enough pain already, why go ask for more? Besides, the blood is messy.

I remember from my past intimate moments oh so very long ago that one of the fun things was that since so much of my body was numb, the spots that felt, felt EXTRA. It was like a treasure hunt. Nothing, nothing, nothing, WOW, nothing…Fun for play and exploration with a patient partner.

I also remember the summation principle -where the more I was touched, the more synapses would light up so that I could actually feel things, even if they didn't feel where they were touched, but elsewhere, so to speak. Like someone would stroke my arm and I'd feel that in my knees or something. Still felt wonderful. It was as if my partner was adding current to my fried wiring and after a certain point, the lights turned on.

Sometimes it's alarming for my partner, I think. There I am, la di da, yes this is nice, whatever. Did I shut off the stove? And then, kerplowie. Not necessarily THAT kerplowie, but fun anyway.

Anyway, since the cat, handsome as he is, does not have that effect, I'll simply have to remember what it was like for my book.

Memories are nice, too. mmmm.

11.09.2013

"I have MS but it doesn't have me…"

What a load of malarkey.
Every time I hear this or read some cheery news about how wonderful life with MS is, I want to scream. Really loudly.
Except that I can't because I'd like to accomplish something tomorrow and extremes of emotion exhaust my fried nerves.
It's not that I'm not grateful. Honestly. If I had to have a chronic debilitating disease, MS is at least amusing. It changes and wobbles and is completely unpredictable. It makes every morning an exciting trip of "can I feel this" and "can I stand up without falling over?" and "will I need to nap half the day today?" It's exciting.
But it also sucks, absolutely.
I am tired of trying to live normally only to be hit upside the head with a flare-up or a sudden inability to do math or fatigue so intense I can't get myself out to buy milk, let alone do anything else.
I used to be a can-do type of gal, taking things on and throwing them about, accomplishing three things with my right hand while juggling another two with my left. I could multi-task. I could work with music on in the background
Now I find myself typing okay with one hand while the other lolls about and goes on strike or types at a different speed. My brain packs up and wanders off at odd moments and words go walkabout.
Most of the time I'm fine.
But I can't predict it, see. When my brain goes out on me, it's a sudden thing. I become exhausted in a moment, crash and burn.
And so I find myself limiting my activities, withdrawing from things, gradually detaching myself from positions of responsibility, backing off, choosing things that can be cancelled in a heartbeat.
So, I have MS, and yes, it does have me. By the throat.