The daily-ness of it all... walking, walking , walking

I linger in bed as long as I can, after a night spent tossing and turning, where I turn on my radio without knowing it and then wake myself when the volume level changes suddenly. I spin and toss as my legs ache. Finally I know I have to get up because I have a dog whose bladder is no doubt at the point of rupture in the next room. I stagger into the shower and/or pull on clothing, release the hound, and it's time for the morning ramble. It starts off easily enough, particularly if I remember to bring my cane, though handling leash, exuberant and desperate puppy, keys and poop sacs is an interesting dexterity challenge. Today I can see properly, so it's a bit easier. Last night the fog was internal and external. Weather and vision. That terrifies me and I spend a fair bit of my time praying loudly that the gods preserve my sight.
But about, say, 300 yards into the walk, it is no longer pleasant. Legs and hips remind me of the MS. They start, ever so annoyingly, to add pain to the walk. Like sands through the hourglass (as the soap "Days of our Lives" used to say), each step adds a soupçon of misery. By the time we're on our way back, the dog is dragging me, looking back to see what the problem is. My legs feel like they weigh 2000 tons, like the weights in Wily Coyote's plots.
I suppose it would be easier if I used my walker, but I'm fighting that. It's even bulkier than the cane and I'm not sure how I'd hold the leash. I suspect bungee cords would be involved.
But we get home and I stagger about feeding the beasts until I can slump myself into a chair.
Which, about half an hour later, is uncomfortable. So I stand to pain.
There's got to be a way out of this cycle. Other than scotch, which does help but which isn't recommended for breakfast, for some reason...

CCSVI and the lure of the "benign"

One of the points CCSVI advocates make is that the treatment is benign, that there are few, if any risks, that it may as well be done as not.
I'm a nurse and I have to tell you the thought of introducing a catheter to any part of my body (but especially the vascular system) fills me with a bit of fear.

I know I'm a chicken. All of my rellies died of cancer (just about) by the time they hit 60.  So the fact that I am on a long term immune system modulator gives me pause, lemme tell you. Every time I inject the copaxone, I think about how a. they are not completely certain how it works, b. it doesn't seem to slow the eventual progress of the disease, just reduce flare-ups and maybe lesions, which everyone agrees don't really predict disease outcomes, c. how since I've been on it, my body doesn't swell up with mosquito bites any more and how weird that is and how there may well be cancer cells sneaking around my body at this VERY MINUTE looking for a good place to lodge and grow, happy and healthy.

I'm on an antidepressant, too - started before my diagnosis, and it's supposed to be doing something for me but again, no one knows what, or whether the depression is caused by the MS or just a reaction to it or to the constant pain, or whatever.  I've withdrawn from antidepressants before and it is some scary stuff, believe you me. They obviously do something altering to your brain and I'd feel a whole lot better if somebody could show me the "insert tab a into slot b" directions for how it worked. But they can't.

Why does the thought of a catheter thingie seem more risky than these steps? Well, I've seen the damage from bad insertion of things (some jokesters might say  - like my kids...- but I love them, so perhaps not..) I know that whenever you put something into your body of the metal or unnatural kind, in places where things are not usually put, you get some damage.  Could be little damage, and worth the risk - such as when you get a screening colonoscopy (which also result in some poor outcomes, however) - given the risk of the alternative. Placing a stent in your heart, for example, is not just one of those things you get done cheerily and wander off to be your regular self.  There is damage caused by the manipulation of tissue that is normally protected.

I've always had troubles with my neck, being a short person with significant stenosis and a lesion or two back in the spinal column. I fear chiropractors manipulating there ever since I heard of strokes caused by neck manipulation. So the thought of a snaky tube going up through those vital spaces fills me with fear.

And yet, the thought of a potential cure for the awful symptoms I live with every day is tempting. Being part of the study that is being done on all those here in Canada who are being followed up for the "treatment" interests me, too - after all, some days I don't feel I am much use except as a medical curiosity.  Every day I take up my arms in battle against MS.  Sometimes it is wearying.

But I've never viewed the procedure as benign.  And of us who have had urinary tract infections after a catheterization know of the risk of introducing illnesses.  Many people coming back from India where they have had medical care end up bringing along a superbug with them, which then spreads throughout our hospitals. And others have other bad results, from spasms to neck problems to this latest report - death by stroke.

This poor woman.  She was basically healthy, had symptoms that were nasty, and the certainty that they would most likely get worse.  But the hope of this "benign" procedure was held out to her  - and she chose it - and she lost, horribly. I know everyone has the choice in this case, but isn't there some responsibility for the medical profession to give the right advice? And maybe she received all the information and decided to continue, I don't know. But if you read the article, some interventional radiologists don't think they should be offering an untested procedure.

Brant-Zawadzki refuses to do the procedure even though people with MS are clamouring for it.

"I do think that physicians themselves believe they're helping these patients, but unconsciously there's an enablement going on of what could become self-harmful, if not a truly self-destructive process."

http://www.cbc.ca/news/health/story/2011/07/08/multiple-sclerosis-ccsvi-death.html

I've met a lot of people with chronic illnesses who do become self-harming with the various treatments they take - before I was diagnosed, I was told I had fibromyalgia.  One of the members of the support group was choking back guafenisin to treat herself based on a protocol someone had created - a dangerous idea, as the side effects are grim. Others are taking opiates for the pain, gradually increasing the doses until they become at risk of falling or doing damage to others.

It sucks having a chronic, incurable disease.  We all want a magic pill.  But we need to be sure it isn't more of a Snow White apple, laced with more poison than benefit.

My deepest sympathies to Maralyn Clarke's family.

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.

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.