Why going to the gym is so entertaining, or not...

Okay.
I've been going to the gym seriously for months now. Three times a week, give or take, an hour at a time, weights and machines and stretching and all that stuff. I usually come home and collapse, body in spasm and totally wiped out. The thing with MS is I don't get to progress upwards like "normal" people - as I exercise, I feel like I should be getting better, stronger, quicker ("We can remake her, better, stronger...").
But it just ain't so. One day I cheerily work through a 30 minute elliptical session without dying. The next day I can barely do 10 minutes. I'm trying to increase my walking capability so I can go on this boat cruise in Newfoundland - which involves a 3 km walk through moose and bug infested territory. I can deal with the bugs, but outrunning a moose might be challenging, and I really don't know how they'll react to my walker...but the views look fantastic and I really really wanna go. So I struggle on, pushing my unwilling cramping muscles through yet another session.
Today I got extra exercise plotting the demise of an exerciser on one of those bouncy machines. She was doing extra knee lifts and swinging her arms around in circles and punching up in the air and lacked only the leg warmers to pass for Olivia Newton-John getting physical. She was working on the machine at level 15 and increasing the level every few minutes.
I wanted to push her over.
Just a little bit.
She was so damn perky.
She even had perky HAIR, for gawd's sake. I instantly hated her with a vile passion matched only by the vileness of my sweat as it flattened my non-perky hair to my skull.
What made it even worse is that my favourite gym guy, the one with the sexy accent, was flirting with her. The flirting was bad enough, but what I really envied was that she could do her high fast stepping while swinging her arms and listening to music and flirting back, without falling over! How the heck?
I was falling over walking on the treadmill. Slowly.
Totally annoying. I much prefer the overweight older men who sweat honestly and suffer along with me. We at least have the honour of our suffering.
Couldn't kill her lest I lose the fondness of the sexy gym guy. So I pretended to find her funny while I turned a delicate shade of green. Why the hell didn't I use my body more when it worked properly?
Ah well, too late, she cried, and waved her wooden leg (as my parents-in-law would say). I'm obviously going to have to find another reason to keep going to the gym. Hmm. Maybe this would work...
http://youtu.be/NOMOwyHCHmQ

Oh CCSVI - why won't you die???? Maybe if we inject you with stem cells....

Every once and awhile, some search engine finds my blog and I get dive bombed by CCSVI protagonists. This time I also got messages from those recommending stem cell transfusions. Which, I must quickly add, have even less science support than CCSVI does, and which have been tied to rather severe side effects, unlike CCSVI overall (though don't get me started about stenting, which seems to have a shockingly high fatality rate, or the rate of restenosing, which also seems unacceptably high)
Strangely, these dive bombings come from places where neither procedure is allowed on the countries' own people.

What does that tell us?

I dunno, but my "sucker alert" becomes activated. You know - that little beeping sound that tells you there are people out there seeking to take advantage of desperate folks with deep pockets - or worse still, desperate folks with shallow pockets, who go broke trying to cure this dratted disorienting disabling disease.

Now, I can understand the desperate people. I've been there. Heck, I already have my suicide plan in place and review it regularly. Not for use now, I add - heck, I can't even decide if I should get rid of my dog. No, it's for later. Just in case.

I don't understand the people on the other side. The ones who seem willing to rip off sick people for unproven and even dangerous therapies (by this I mean stem cell treatments and stenting).

The pro-CCSVI people go on about how big pharma loves we MS endurers cos they make tons of money off of us. Well, follow the money, people. Look at what CCSVI has brought providers. Look at what repeated treatments bring them. Look at how they treat and then send any complications back home where they don't have to pay the costs. Just saying'.

I know, some people say they've had wonderful results from CCSVI. And they may well have. God love 'em. And I'm happy for them. I'm less happy about the paranoid rantings against anyone who raises a question about the procedure - that just makes we MS people sound like crazy people and I have had my care suffer because of this.

Me, I'm waiting for the science. And yes, each and every day I lose a bit. Like sands through an hourglass, as the old soap used to say, my abilities slip endlessly through the narrow neck of no return. I exercise my body and my mind in an attempt to stall the flow. I take my medicines like a good patient, most of the time. But I'm not a pawn of big pharma and I fight taking any extra meds. I do my research and am glad I took the time to study nursing and epidemiology and health policy so that I can, in fact, usually understand what I am reading.

I know the tipping point may be just around the corner, where I can no longer walk dependably. But it's not intolerable yet. I am alone, so must learn to be dependent, and this is killing my soul. Or making it grow. I haven't figured that part out yet.

I'm not yet willing to give some manipulative money grubbing individual my carefully saved thousands of dollars for a treatment that may well not work, only to be left with not enough money to afford the wheelchair I will now need. I've seen far too much of that out there, and it breaks my heart.

If I do eventually succumb to temptation and try out CCSVI, there's no way I'd agree to stents. There's nothing good to say about them.

And I damn well will not give my money to someone who plans to inject me with stem cells - those cells that can turn into ANYTHING and that don't show any promise unless you actually kill off all the regular immune system in your body. Even then, the risk of death is high high high.

Listen to your sucker alert, will you? Let's stay safe out there.

Oh blessed drugs!

One of the things about this foolish, changeable disease, is that you have to do so much self-management, sometimes in spite of your doctor. One can always hope to be on the same wavelength, but occasionally the focus differs and you have to think it through yourself. My neuro told me that the Baclofen I'd been prescribed by another doc for spasticity wasn't really needed in my case since I didn't have any spasticity.
Well, true, then I just had twitches, not spasms. So he gave me drugs for twitches.  Fair enough.

But I've been unable to walk more than a block without pain for weeks now. Some of it is no doubt due to the kidney stone thing, but even once it was gone, my legs weren't working together.  One foot spasmed regularly. Pain and I became close personal friends.  And as someone whose big kidney stone was found halfway down the ureter (and I was in minor discomfort), when I feel pain, it should tell me something.
So today I decided to try a baclofen.  And you know what? It worked. I just came back from my first fast walk in weeks. My legs worked together with my knees and I could hoof it as I like to, fast enough to satisfy even the rampant poodle.  My hips swung along like they are supposed to, easily, cheerfully, enjoying the movement. It was f-ing amazing.
Motion is so wonderful to experience when you've lost it for awhile. There is something so mystical about the way a body works together, the way the hip swings in the socket, the way the shoulders move within the framework of muscles, the support and flexibility of the spine.  I am almost giddy with the joy of it all. Those of you, who can move easily - go for a walk. It's a true gift.

"Well, it looks like you've just gotta live with it...."

Isn't getting older grand?

The thing with having MS is that you never know if a new crazy thing going on with your body is a transient (with luck) sign of your MS, or if there is something else wrong ticking away in your body.  After all, a ms body is, as we say in the fiction game, an "unreliable narrator". It makes one feel a bit of a neurotic.

I remember being in agonizing pain for several months, thinking it was just fibromyalgia, only to find I was suffering from bursitis in my hips and a torn rotator cuff. I mean, really.  One night a few months ago, I had agonizing pain down one side and thought it was a muscle spasm, hopping in and out of the bath several times to relax the muscle and wondering why it wasn't working.  Well, it was a kidney stone, so no wonder.

Now I have lucked into an excellent nurse practitioner who actually believes in preventive health care. She has sent me for various tests and picked up all sorts of interesting things, none of which are acute enough yet for the people she refers me to to find interesting.  So I am in the bizarre situation of waiting to get worse.

Which is pretty funny when you pair it with the MS thing of "going to get worse". So I am under observation for my kidney stones to see if they grow any bigger, am waiting for the gallbladder attack to demand removal of my gallstones, and now just returned from a rehab doc who looked at my knees (and my insurance) and said, "hmm.  Well, they don't look too bad - even if you can't walk on them reliably.  So let's just leave them, shall we?"

And she explained that the reason my knees were malfunctioning was that my hips were weak.  This after months and months of squats and exercises of the hip variety.
So I suppose this is where the rubber of my body hits the road of the MS. I remember early on going to a physiotherapist because one leg remained weak despite exercise. I guess the exercises are helping me stay relatively okay but not really improving much.

I just wish, sometimes, that someone out there would say to me, just once, "Well, I've got JUST the thing for that. Let me go get it and in a few minutes you'll feel as good as new!"
No wonder people are flocking to CCSVI despite the dearth of positive results and the gradually accumulating negative outcomes. We're just so tired of hearing, "Well, it looks like you're going to have to just live with it."

Unfortunately (and here I would like to add "Merde alors! piss piss piss!" as I do in situations that are fraught with disaster), I think they may be right, and we will just have to adjust to our bodies gradually getting worse every day, until they become bad enough that they become interesting.

And hope that we stay boring for just a wee while longer.....

MS Society of Canada's web presentation of What's New, What's next

Includes a very serious discussion of CCSVI as well as other treatments and gaps in the research.
Sensible discussion, I think.
http://mssociety.ca/en/help/education_nes.htm#video

I want a new drug

I want a new drug, yes I do.
Huey Lewis and the News
I want a new drug
One that won't spill
One that don't cost too much
Or come in a pill

I want a new drug
One that won't go away
One that won't keep me up all night
One that won't make me sleep all day


One of the most awful things about MS is the endless piles of pills that are prescribed to you to manage the symptoms. They cost all sorts of money, they interact with each other, causing more symptoms, they rob one system to manage another.
I've fought the drug thing as much as possible and even resent taking the ones that are supposed to be managing my disease (the endlessly expensive Copaxone)
Lately, though, I've found a new drug, one that I had forgotten about.
My symptoms are relatively quiescent at the moment, so I'm doing the exercise thing, and I tell you, if you can force yourself past that 10-15 minute barrier and break out in a sweat, those endorphins are fabulous.  I could become an addict, easy. Today I was singing along as I gasped through 30 minutes on the elliptical trainer - at least until someone else came in. Sweating like anything, no glowing for this gal. It was wonderful, joyful, painful....;-)
I'm trying to be careful, keeping cool, trying to keep my fluids up - but once I start it is so hard to stop....
Love it.

Oh the joys of being able to move!

I feel bipolar. On the days when my MS body won't cooperate, I am grouchy, depressed, hostile, unmotivated.
On the days when it works, the sun comes out and I spring about, filled with the energy of muscles screaming to break free.  For the last three days I've managed a 30-45 minute aerobic workout, loving every minute.  I even did the deadly Wii Active today (sure, just the easy low impact one, but still!), breaking into a sweat so prodigious I daren't be seen for at least a half hour or so til it all stops pouring out of me. I can feel my tummy getting tighter, and it fills me with joy. And my legs remain strong, my balance is good (until after the exercise, when I develop a listing to one side like a sailboat tacking upwind).  My lungs feel open and exercised and aerated, my brain is functioning better, it's all wonderful. And I feel less like smoting anyone who annoys me...
I get done with my workout and immediately start thinking of doing another, my mind and heart willing, my muscles and nerves ever so affirmatively NOT. But I try and work in a walk as well later in the day, just because I can, and there are all those days when I can't that my muscles have to make up for.
And then, at night, when I crawl into bed, the pain starts - the muscle spasms, the contractions, the hip flicks. I try not to whimper, but it hurts, damn it, especially when my back flips my legs and they are pooped from the day. Fortunately, I am usually so tired that I fall asleep before too much whimpering ensues, but I'd sure as heck like to know why the spasming starts when I am at rest.  And maybe how to forestall it. Maybe I'll find out when I see my neuro on Friday....

Meanwhile, I'm riding this active horse for as long as my body will let me.  It feels so GOOD! And I can't help but think, if I exercise now while I can, maybe I'll get a grip on all those other monsters that have come to live with me - overweight, diabetes, high blood pressure...of course, the main problem is that when I exercise, I get very very hungry....;-)

Help Mii!

Ah Mii.
Any of you who read this blog know I love my Wii Fit. It's perfect for we wobblies, as it helps balance us, and adjust its expectations day by day so we need not die from over exercise....

But I've got some issues.  First of all, I created my Mii, designing it short and round, only to get on the board and have it readjust me shorter and rounder.  It's harsh.

I got over that shock - after all, I'm still cute on the picture despite my poundage - but then came the weigh in....

The line flows upwards, the BMI is over in the red area, and my Mii shoves out its not insignificant tum and wiggles it while the program says "That's obese!"

Okay, okay, I get over that and even learn not to take the cracks about the balance test not being my strength to heart(it was a bad balance day) and not to cry at the days when my Wii fit age trots up near my real age...and sneer back at it when I haven't exercised for a day and it gives me grief...

Unfortunately, now I am trying to lose weight somewhat dramatically as have diagnosis of diabetes to add to the thrills of MS, and the scale part is important. But it varies extremely depending on where on my carpet I place it. One day it soared by 4.5 kilos!!!! I know water retention is one of those things we wimmen have to cope with, but migods - ten pounds of water?  Unlikely. I hoped.  I rearranged the board.

"Ooh" it cooed when I stepped on it. "Your weight has changed.  Continue?" I continued. I still ended up 3 lbs heavier than I'd been the previous day, but at least I didn't feel like I needed to lie down and die.

Now, though, I don't trust it. I test my weight at least three times during a session. I'm becoming obsessed. It tells me my weight will vary by kilos depending on time of day...it mocks me with its red line and tummy wriggling...it nags me to exercise exercise exercise to get that posture of mine better, alternately praising me for excellent posture and telling me I wobble (dang left ankle) and need to work on my core. It's like an inconsistent parent, giving conditional love.

Help!

In praise of Wii Fit Plus

There are some wonderful technologies available that help me cope with my everyday degradation with MS. I like Dragon Naturally Speaking if I can't type, for example.

But the Wii fit stuff - both this program and the other fitness videos - well, they are a good help for me generally.

I like to exercise within my capabilities, but it's so hard to estimate these with MS. I can set out on a walk, feeling fine, only to realize I have planned badly and ended up far from home, unable to walk without pain. I haul my sorry hide back, step by painful step, afraid of the time when that won't be possible.

My legs are completely numb. My feet feel nothing today, and I am numb all the way to my hips. Exercise can be dangerous in this state - it's easy to get myself into a position where I can do myself damage. I'm not sure where my legs are in space, or how I am balanced. But I need to move, or lose my senses completely, to say nothing of my muscle strength.

The Wii fit gives me feedback for every exercise. While I can't FEEL where I am in space, the little mark on the yellow circles tells me how to hold my body to get the best stretch, to balance effectively. The more I can focus on keeping myself in the yellow area, the better my core strength gets, the better I hold myself, the safer I am with regard to my life.

I am always amazed at how much better I feel even with a very little bit of exercise and stretching. The Wi Fit isn't a difficult workout, really, though after an hour of it, you'll feel it. I mix it up with the Fitness Coach one, and Just Dance. I still try walking although that is not working out very well of late. I SHOULD go biking or exercise biking - there's a gym across the street that remains untouched by me, lazy as I am.

But there's always that fear of doing myself an injury. It takes me such a long time to get back from injuries now....

The Wii Fit, though, fills me with confidence, allows me to focus my workout to match my energy, and tells me all the time how well I am doing. The feedback is invaluable, the coaching helpful. I highly recommend it.