The creeping terror

Ah yes, well, I do like to be dramatic.
So here I've been, feeling vaguely well for the last while, exercising madly, almost able to walk without occasioning some disturbance in my motor core.  But the evil MS doesn't sleep. It's still there, and as soon as I put pressure on myself, it slithers out around the edges and does little things to me, like making my right toe drop just for the heck of it, or making my balance wonky all of a sudden so if I turn about I risk falling, or stopping my brain from chugging along appropriately. My typing degrades.  My ability to make decisions slips ever squidgewards. I make up silly words....

Marc, the infamous Wheelchair Kamikaze, pointed out the slithery dread in his blog today in talking about why there seems to be such a split between neuros and MS patients regarding CCSVI. The thing is, all the stuff they offer us just delays the inevitable.  Our brains remain twitchy, swollen, and the MS continues to kill off the myelin or astrocytes or whatever they are figuring out now, even when we appear fine. I have a good friend who has pointed out several times that we none of us know our fate, and tis true I may be run over by a bus tomorrow - but the difference is, we do know what our future MIGHT be, and it causes fretfulness. We would prefer a cure, thanks.

Every time I feel my body slipping, I can feel that dread.  I can usually compartmentalize it, promise myself that I will worry about it tomorrow, so needn't do so today, but when I head to bed and notice that, despite the medication I am on that used to work to stop my leg spasms, they have returned - well, it's scary.

Or when I go to an event and see people with MS much further along than I am - it's hard not to put myself in that wheelchair, imagining how I might cope, wondering how they find the strength to do it.

Then I shake myself and tell myself that really this just means I should squeeze joy out of whatever fit days I have left, and find extra joy in wherever I need.  It's true, but it's not always easy. Pollyanna-ishness is tiring.

It makes me want to punch things.

Wheelchair Kamikaze's excellent review of CCSVI

As always, on the target. I'd write a follow-up but he's way ahead of me here and I can't say it any better.
Marc:
http://www.wheelchairkamikaze.com/2010/10/comprehensive-roundup-of-ccsvi-info.html

Hope vs. despair

I've decided to get a puppy.  My family members probably think I'm mad.  After all, I had a perfectly wonderful dog, Dudley the magnificent (in the photo) who I loved to bits, and I sent him away to live with another family shortly after my diagnosis.  The thing was, I was fully prepared to be crippled and in a wheelchair after a year and didn't want to subject a poor wee doggums to the boring life that would mean.  Dudley went off to a family of five, with three cheerful little girls who promptly dressed him up in doll dresses and hats and who he went to happily, used to the pell mell of a herd of Bichons in his parental home.  My quiet little place must've bored the poor fellow, so I'm glad he's put his paws down in a place where he will be loved to excess. (and which has a fenced yard!)

I have cycled through pets, looking for companionship in a container I could manage.  I have my ferocious parrotlet, Dora, who tries to run my life and who lives a very spoiled existence indeed.  She's sweet and bossy and prefers me to any other landing surface which is adorable. But she's not quite enough.
This puppy is a vote of confidence - in me, in my ability to deal with this disease, in my ability to live alone and succeed at it. He's sweet and roly poly and all that, but his genes are smart, and I know if I work at it I can train him to be a great companion animal. He will make me walk even when I don't really feel like it, he will make me laugh also. I need this, more than I can admit. Living alone with an unpredictable chronic disease is lonely at times.  It's not that I want a person around, though, necessarily, though I like that.  Sometimes I just need a mute companion who will live and breathe around me and care for me.
I do hate the unpredictableness of this disease and wonder about taking on a new responsibility - but then I have hope that the progress will be slow, that I will have time to truly enjoy my new little buddy, exploring new places through dog's eyes. I have hope.

Today I awoke...

to dreams of spasms.  I'd been watching a tennis match with friends and family and we were sitting at a picnic table, when suddenly my legs spasmed up and arched over the table as I stood, seeking escape.  I ended up having to crawl away, while my vision greyed over and eventually I was blinded.
I remember calling to my mother, "Can we just please go home?"

It was the kind of dream that sticks with a person. The kind that makes your body twitch even when you don't want it to, the kind that sends your mind into unhappy areas, thinking of this disease and what it is doing within your brain, undetected.

There's yet another new theory about MS - that the problem isn't death of myelin, but instead, activation of astrocytes, the little cells that make and repair everything to do with nerve cells. If they go rogue, bad things follow.
Ah well.  I should feel reassured that as the stem cell and other research goes ahead, we are coming closer to an answer to this disease. I can only hope we figure out prevention soon - I have kids, and  my biggest fear is that they will be visited by MS themselves.

But the more I hear, the more I realize this is a very complex entity we're dealing with here.  And I just really wish it would stay out of my dreams.



http://www.nature.com/neuro/journal/v7/n10/fig_tab/nn1004-1021_F1.html

Blaming and hating

There's so much anger out there about the CCSVI thing.  It makes me weary.  I mean, heck, we're a pretty unlucky gang, we MSers, and we should be standing together, rather than trying to decimate each other. It reminds me of the battles between stay at home mothers and working mothers, where both sides just hurl invective at each other (and men) without ever acknowledging the right things about the opposing side.

It's exhausting.

I find it most frustrating when the MS Society gets attacked.  These are the same people who get people wheelchairs if they need them, find walkers and canes if necessary, look into housing issues and legal issues ( or at least refer you to someone who can help) and yes, fund research. And yet all of a sudden they are the great satan and do nothing but evil. I can't agree with that viewpoint. In fact, it seems like ingratitude of the highest order.

I know our MS branch is working so very hard to raise the money needed for client services, ongoing classes, research, education and awareness. The small group of  staff are everywhere, totally dedicated, working many hours overtime to fill in for volunteers who couldn't make it, to help make events a success.  There are many many volunteers who help with their work, many of whom feel disenfranchised by the anger directed at the society. All in all, this hatefulness is not going to get us anywhere. Except maybe the MS Society won't be able to help those folks who really need their support. Do we want that?

Research is ongoing into CCSVI. Fortunately (I believe it is not going to be a cure-all), research is also ongoing in several other areas. This is a complex disease.  A study (http://www.eurekalert.org/pub_releases/2010-09/cp-isp091610.php) today reported that the immune attack on neurons doesn't just attack the myelin - it attacks the cells themselves and changes the calcium balance. It's preliminary, but it just adds to the messiness around this disease and the very real challenge in treating something that is so different for each person.

I wish we could concentrate on working positively instead of negatively.  I wish neurologists wouldn't be so rude about it all. I wish they were cuddlier overall. Mine does not fill me with love, I gotta tell you. So it's understandable that people might get a bit angry at the neurologists.  But hey - the neuros have their own problems.  MS patients are notoriously well-informed and somewhat demanding.  We can be a pain in the arse.
Maybe we need to just chill on both sides of this thing and admit we may both be wrong. Or right.

There's one thing I do know.  The MS society folks and the neuros aren't hoping to keep us sick forever. That's just paranoia. There's plenty of work to go around.

Now the drug companies?  Well, they love it when you have to take a medication forever. It's true. I'd love to force Teva to lower the price on Copaxone, which they've been ordered to do but have ignored up till now. I'd love it if we could all get off the statins everyone is being prescribed, or the antidepressants. I'd adore a national pharmacare program here in Canada. We have fill-ins, but they involve so much paperwork it's almost not worth the trouble. Almost. Except that I'm at $1800 a month for prescriptions alone (low estimate) and that could bankrupt a gal.

Dating and the Sow

It's a challenge, this whole dating world and the Mad Sow. It isn't easy to not bring it up. I'm rather young to be retired, I obviously don't go to work, and I look relatively fine.  Questions arise. I've taken to telling people I'm a writer but I need some more publications if I am to sound persuasive about it all. Maybe I can just say I have an inheritance that doles me out a dribble of money each month?

But the question is always there - how bad is your illness?  How bad is it going to get? If I fall in love with you, will I be saddled with a cripple? Harsh, but reality is many women with MS are left by their partners. And vice versa, though less frequently. Chronic disease is no picnic to think about. And though I deal mainly with crushing fatigue and numbness now, who knows what tomorrow may bring? I don't. My neurologist says my disease looks relatively quiet. That's nice and I'm grateful. The fact that I was diagnosed older than is common could be good or bad, depending on which study you read. I take my meds, I try to eat properly, I exercise madly when I can. I'm doing everything I can to keep well, but my brain might have different ideas.

But, let's be honest here.  I'm over fifty.  Almost everyone in my age group has at least one chronic disease. Many of them don't know they even have it. Many of them will die well before me of high blood pressure or stroke or diabetes or cancer. It's the idea of having MS that scares people - the image of wheelchairs and walkers and trembling limbs and spasms. Heck, that scares me, too.

The other diseases aren't as visibly disabling in people's minds. But as a nurse, I can see them.  I can see the smoker, coughing, and visualize their lungs, see the COPD waiting ahead.  I see people who don't exercise or who are scarfing down mallomars, and I know what they'll likely be told soon.

So I get slightly crusty when I'm quizzed about my MS. I'm good now, I tell people. I have no idea how I'm going to be tomorrow.  And neither do you know how you will be. Let's just pretend we are all healthy and live the life we have, right now.

Crashing

I feel like an ant who comes across an ant lion trap.
For the last few weeks I've been feeling fine. No real signs of the Mad Sow, exercising like a crazy thing, doing aerobics and strengthening and able to walk and hike and carry heavy things and balance and move and filled with energy and light. Carrying and toting and sending kids off with furniture and stuff I helped load into vans, helped take off vans. I am busy with my daily endeavours, running here and there and doing important ant-like activities. I'm cheerful, glowing, stimulated and stimulating.

Suddenly I notice the sands slipping around me. It becomes harder to exercise - my balance is off - I start to risk falling as I step into aerobics. I find volunteer things seem too difficult to continue with -my brain won't take on new information. I stop eating so healthily because it's too tiring to even think of food preparation. I get tireder.

Last night, needle sharp pains start in my eyes.  I drive my car against the side of a building when I do a drive-through for coffee. I go out for lunch and am overwhelmed with the noise and chatter and can't quite make my head work properly.  After lunch, I am entirely wiped out, stagger home and crash into bed, too exhausted to move, lying flat and unconscious for two full hours. Now I'm awake, but shivering like I have the flu. I am slipping down, like the ant in an ant lion den, grains of sand slipping under my feet.

Like the ant, I'm going to pretend the jaws aren't at the bottom of the hill. I'm going to keep scraping at the sand grains, hoping to pull myself out of the trap. I'm going to rest tonight, eat healthy things, look after myself with green tea and cuddly blankets and send myself back to bed early. And hope, hope, hope the edge of the pit is closer than it looks.

But there is something nasty waiting at the bottom of the pit.

I like the healthy ant me. I don't want the illness to take me again. I don't. I don't.