the challenges of encouragement

With MS, it's so easy to become discouraged. It is the easier path, the one that comes most naturally as bits of your body fall apart, or cease to function reliably, or just plain get cranky. It's the same with most of life - looking at debt, or looking at career aspirations that go wonky, or trying and failing as we all do each and every day. MS adds a layer of mystique onto the regular challenges, making the chance of success entirely outside of our control.

There's a wonderful website, Despair.com, that markets posters and "motivational" things that play on our ease of discouragement. I love their stuff. It makes me laugh. But when I looked at their calendars, which I tend to buy every year and use as a cynical backdrop to my life, I realized something had changed.

I don't want to be cynical anymore. I want to be fresh as a daisy, cheered by a raindrop, looking forward to each new day with the hope of wonderment. I think I've always been a bit that way, but now I find I am rejecting the cynical side of me, focusing more on the optimistic side. There's no real reason for this, except that, really, most of my life has turned out wonderfully. I've even been rescued from a potentially damaging management career by physical illness. Before I could do much harm. I'm thankful for that.

But encouragement is tough. 'Buck up, buckaroo!" is inadequate, and all those posters exhorting us to let up and let God are just plain annoying.

When I was trying to encourage my children, I had the same difficulty as I have now, encouraging myself. Pasting encouragement on too thick destroys motivation. Telling myself I did well to get up and get showered this morning seems stupid. Not encouraging myself enough leads to feelings of failure - what? You only did that today? What were you doing the rest of the time?

Getting the balance right is tough. Our self-expectations are our toughest critics. How to get them on-side and helpful?

Tools to Life, an online web self-help program, touts the message that there are few things we can actually control in life - the chief one being our attitude. "My attitude is my decision" is a frequent statement, and it IS true. But how to maintain an attitude of self-encouragement without becoming a mockery of oneself? It feels silly to tell yourself that you are wonderful, but in reality, who else can do it effectively? If any external person says this, the immediate response (in my head anyway) is to say, "oh, but they don't know about...." Maybe part of accepting encouragement is learning to shut that denying part off. Maybe I'll try that.

Shake shake shake senora, shake your body line

Shake shake shake senora!
Well, I love Harry Belafonte as much (or maybe even more) as the next guy, and this song never fails to get me moving, even today, when I feel as if I've spent the last three days in the machine pictured to the left....

Shake it all the time....Rock your body in time....

Yesterday I was hit with another total body dancemachine thing.
So I called the ever-unhelpful MS nurse. Who said she couldn't possibly do anythine for me over the phone, and that I needed to be seen. At a walk-in. Sure. Like anyone there would have any idea how to treat MS. Yep, and I believe in little green fairies, too.

But there was nothing for it. By this time I was becoming an advertisement for bar shakers, so I vibrated over to the walk-in, waited the requisite 2.5 hours in amongst people with supposed swine flu, various people with unspecified coughs, etc., and was finally seated in a small room where the paint was missing here and there and where there was an unattractive smear of mucus along the wall. The ever smiling and pleasant resident told me he knew nothing about MS and so could not help me. He went to get the doctor. The doctor, a 25 foot tall guy in jeans and a loose shirt, came in unwillingly and told me he knew nothing about MS. So I begged him to help me with a muscle relaxant or something as the vibrating was getting exhausting. I was spasming while I sat there, arms shooting out in two step spasms, legs twitching. When I walked to the pharmacy nearby, I could barely stand as the vibrations in my legs shook me about. Even the pharmacist looked at me longer than the docs. Who knows if this is really part of the MS? I might have something completely different but no one is interested in finding out.

Got my drugs, went home, took one, fell asleep. Woke, still vibrating, took another, slept through the night. Today, I am not as twitchy, but my body feels achingly sore, like it would after contracting for hours and days. I tried a walk to stretch things out but am still quite wobbly and weak on my pins and didn't dare go far, especially since my feet started making nasty pre-spasm cramping things as I did.

I'm so frustrated. I keep thinking I am going to feel better, I plan my life as if I will be able to cope with a normal life, and then I get whonked up the head with more problems. And my "helpers" on the medical side are so unhelpful. It's like they expect me to just suck it up and put up with it. Well, I know, I will have to. But they seem never to take what I tell them seriously.
What am I supposed to do???? How am I supposed to live????

And most importantly:
1. Will all this shaking lead me to develop the hourglass waistline I have always craved?
2. Will I be able to dance to Harry Belafonte again? Under my alert control?

Oh Harry, where are you now....?

Oooh ooh, twitchy woman

Twitch
v. twitched, twitch·ing, twitch·es
To draw, pull, or move suddenly and sharply; jerk: I twitched my fishing line.
v.intr.
1. To move jerkily or spasmodically. See Synonyms at jerk1.

Today, I am doing twitching. I've only ever had this happen once before and it's quite a trip, let me tell you. For an hour or more, my body acts independently - of me, of the rest of my body, of rationality. I start tremors in my hands, and gradually my arms, legs, abdomen and back all get into it. My head moves on my neck. It's not like a seizure, as in a seizure, body parts tend to work together. In this case, everything dances alone, to its own beat.

It feels odd, let me tell you. At first I think it is because I've had too much coffee or am hungry or whatever. The usual tremors one sometimes gets from caffeine. But eating, drinking, etc, don't make it go away. And the abdominal twitches are beyond weird. At these times I wish for a tattoo so I can watch it dance to pass the time...

After an hour or so - in this case, an hour and a half, the twitches start to die away but isolated ones still happen - and now the fatigue, headache, and muscle pain set in.

Well, I know what you are going to say - did you call anyone? Get help?

I did. I called my excellent Copaxone nurse, Bonnie, but she hadn't heard of it related to the injection (which I had given a half hour prior to the show). I called the MS clinic, but the nurse was off for today and might be able to call me back the next day. The office staff suggested I vibrate over to a walk-in clinic for assessment but really, what would they do save admit me to hospital or something foolish and then exactly nothing would happen. So I waited and the sensations are lessening. And then I looked it up on patientslikeme, an excellent web resource. Turns out several people also have this little problem. Turns out there's nothing that can be done about it. (what a HUGE surprise). Turns out it is brought on by fatigue or illness, they think. Oh phooey.

Recommendations: more rest. Like I could do anything now except rest - my muscles are totally worn out. Off to my book and a cup of (non-caffeinated) tea.

And hope that it won't happen again. Feel quite oomy.

paperwork, or the moibus strip of government forms

Back a few months ago, I tried to apply for CPP splitting with my ex. For the unitiated, pension splitting is what happens after a divorce where one partner stayed home with the kids and is now entitled to less CPP. The stay at home partner can apply to share the CPP her spouse accumulated while they were married, thus increasing the eventual payout. I was also applying for CPP to help my disability payments -the real benefit right now is to my disability insurance company, who promptly claws back their benefit based on the CPP payment, but never mind.
So, to complete this gargantuan task, I had to take my separation agreement and my divorce agreement to a Service Canada site, have them certify it and copy it, and send it in.
The lass copied half of the documents and sent them in uncertified. They came back in six weeks, saying they were uncertified and couldn't be accepted. When I returned to the office, asking the same lass to certify them, she told me she couldn't because she didn't remember me. I'd packed the originals, so couldn't show them to her.
Recently I received another copy of the form I'd filled out, saying they had never received it. But they had, since they sent me back a photocopied form with the returned document.
So I've filled it out again, despite hand and body spasms, and now will find the other documents and try to convince them they should accept them now.
Why do I still feel they will come back to me?
It seems most unfair to inflict this on someone who has short term memory problems. It's too hard to keep track of everything. Or maybe they are testing my disability - if I snap and call in and yell at them that they already have this info, will that mean I am not disabled?

And one and two and one and two

Update on exercises, brain plasticity and all that...
Still slogging through the Wii 30 day challenge although it kills me for the day after each exercise session - and I deleted squat jumps out of the plans for yesterday as my knees felt this was altogether too much to ask. Still, my running is getting better and I can smash the targets in boxing...
So today, as my body needs rest, I thought I would try exercising my brain - and ooh, is it rusty! I know I've been choosing simpler books to read and avoiding mental challenges but I didn't know my slumming had had such an effect. I signed into a site by Luminosity: http://www.lumosity.com/ and signed up for their 7 day free trial of the games.
They are great - much better and more challenging and also cuter than the ones on Brain Age 1 and 2. You do math, identify things through memory, create words, match shapes and colours. Most of the games are a bit like the Swope test - you have to do two things at once, and the results highlight how your brain reacts to these two demands.
For example, in one game, you must click on a spot where a bird appears while remembering the letter that appears at the same time. The letter is put into a hangman-type format and you can guess the bird's name or fill it all in with "snapshots" (each bird you click uses one shot). Sometimes, while looking for the bird, you forget to look for the letter. Or you just see an edge of it. You get higher points for clicking more accurately on the bird and for solving the puzzle earlier.
Or there's the penguin maze puzzle, which I found really hard. You are racing another penguin through a maze to catch a fish (it seems nice that the other penguin moves so slowly except when he beats you and you feel very stupid) - using the arrows on your computer to direct your little penguin. The trick? The maze rotates and you have to remember the orientation of the penguin with relation to the arrow on screen to use your arrow keys successfully. I got completely confused and couldn't make my mind figure it out, no matter how hard I tried. But the penguin is cute when it catches the fish and oh so sad when it loses it so I'll be back and try again.
Math is done with raindrops...each drop has a puzzle in it and you must solve it before it adds to the pond. Sundrops come along that evaporate all the raindrops. This one I'm sure I will get after more practice - it seems when I don't do math regularly, I really forget sums and etc.
After each puzzle you are given a rating, and if you fill out your profile, you can be compared to others your age. It was quite terrifying today for me - I was only in the 38th%tile or so overall. The program rates you on several parameters, so it's easy to see where you might need more practice.
After the 7 day free trial, signup is around $10 a month or less if you subscribe for a year or more. They add new puzzles all the time and the site is backed by research.
I'm hooked. I'll keep up for the next 7 days and if it continues to be as interesting, challenging, and fun as today was (I could feel my brain aching!), I'm going to sign up.
But for now, I am taking my aching body and mind for a rest.
.

A wee chat about suicide, for World Suicide Prevention Day

Suicide.

Such an ugly ugly word.
Such a sad thing, for the person, the family, the friends, the world.

MS and suicide are rather closely tied. It all starts with the underdiagnosed depression in MS patients - often no one even enquires, or figures people with MS are just adjusting to a chronic disease and thus a bit blue.

Why does depression occur in MS? The official answer is that no one knows, since we aren't really sure why depression occurs in anyone. Some hypothesize that it is due to brain changes caused by the disease, changes in neurotransmitters or conduction of impulses, damage done by lesions in the brain. Some think it is adjustment. Others, including me, think it is a combination of the above plus the loss of control MS presents to you. MS is unpredictable, unreliable, teases you on by making you feel well, then knocks you flat. It steals little bits from you at unexpected moments - sensation during an embrace, strength during a walk, ability to talk during a presentation, ability to taste during a luscious dinner.

Some hypothesize that MS patients commit suicide more frequently because it represents a taking control over a disease process over which they have no control. I know when I was first diagnosed, I researched ways to commit suicide. I made my plan, a "just in case" plan, in case I ever needed it. I had to do this to give me that feeling of control. I make sure I always have the means available, although I will likely never do it. I just need to know that I can.

According to Feinstein's research (2002), almost 30% of MS patients harbor suicidal intent over the course of their illness. Sadovnik et al (click on title for source) found that 15% of all deaths in a MS clinic population were due to suicide - a two-fold rate of suicide compared to the general population .

Risk factors include alcohol abuse, social isolation, and unemployment. Many people with MS start to isolate themselves, because of their inability to get around, their fear of incontinent episodes, their fear of mental lapses. A goodly proportion give up work because of the overwhelming fatigue associated with the illness. This both leads to financial problems and more isolation.

It's no wonder alcohol abuse seems like a good idea...

People with most chronic diseases benefit from continuing involvement with life and with a continuing purpose. I think it is something for the health care system to think about - how to keep people involved, how to allow the patient control over their health and conditions, how to point them towards the right place for support and involvement. Often the "system" is all about taking control, wresting it from the patient, putting it in the hands of the expert. Maybe it is time to reevaluate this...

The rate of suicide in MS is highest in the first year of diagnosis, often before true disability sets in. Perhaps this is where it is most important to offer help. I know I was diagnosed and left hanging for six months with no one but my wonderful drug company nurse to keep my soul together. I don't think this is right. I think we should focus intense intervention for people newly diagnosed to get them settled on a good path to managing the disease, and with this perhaps prevent the carnage of suicide. What do you think?

In the meantime, perhaps everyone should look about you and see who might be in the most need of support, ill or not, and reach out. Suicide can be prevented. But we have to talk about it first.

Aiming for health

Before I moved, I purchased this exercise game for the Wii my youngest son generously left for me when he took off for places unknown. I finally tested it today. On lowest intensity, and with a half hour workout, I was sweating freely and it felt glorious! Kick boxing was wicked fun, and even the running was amusing, although I had some problems with the leg strap (I believe it is used to people with longer and or skinnier legs).
So I've started the 30 day challenge. Each day, more exercises. Different exercises.
The game gives you instant feedback, demonstrates the exercises effectively, and saves everything to adjust your next days' workout. I can't wait to see what it will have for me tomorrow!
Best thing? No weird looking coaches like the bluish ones in the Wii Fit program that gesture at you with gently swinging arms. I do still like Wii Fit's strength and yoga exercises, though.
Also, unlike Wii Fit, Sports Active doesn't make your body look exactly like yours does in reality - I come off as rounded but not spherical which is better than my tiny donut Mii from Wii Fit.
Much fun - highly recommended and I'll let you know how I get on, MS et al, with this tool. Apparently they are coming out with an expansion pack of new exercises soon, but I think this main program will keep me busy for some time. AND I can exercise scantily clad and gasp in the privacy of my own home...

Sleep, glorious sleep....

The MS fatigue is unusual. It makes me believe that Epstein-Barr virus is a cause, because when it hits it is like having mono all over again. It is total, blinding, encapsulating. I shopped yesterday, but was totally unaware of my surroundings, like walking through fog. I ate yesterday, but tasted nothing. I spoke, but made no sense. I moved, but have no body recall. I could not see through the greyness around my eyes. It is really quite a dangerous state, as I am only halfway present, and probably prone to walking into speeding cars, putting my hand on burning elements, etc.
I am, quite frankly, not all there.
Yesterday was stellar. So murky, I felt wraithlike, except for the pain. Which accompanies the fatigue. Probably a good thing, as it makes me less likely to move, thus keeping me from speeding cars, etc., above.
The day passed. I did some things. I don't know what. And I slept, a deep sinking sleep, drowning in unconsciousness, hours passing without note. I slept all afternoon, all evening, and until 9:30 this morning.
The pain is mostly gone.
But I could sleep.....
Dang. I was doing so well. So I did my usual thing - I overcommitted and did too much. When I feel good, I forget I have limitations. It's a good thing as when I don't forget them, I feel a wee bit despairing.
There is really no predicting when the fatigue is going to hit, except that the day before it hits I get a zinging feeling through my body, a jangling of nerves that makes me feel overcaffeinated, slightly disconnected, twitchy. Resting then won't keep it away, but at least I can better prepare for it.
It's adjusting to it every time that is so heartbreaking. My mind refuses to accept that everything, everything, has changed.
On the positive side, it also has its joys. Today, I woke up pain free. There is nothing to compare with the joy of that respite.

wanting it all, paying for it...

My last posting was all about wanting more - well, today the bill came in. I've been having fun, pushing the fatigue envelope, doing things when I know I should just loll about and gaze into the middle distance, but today...today was capped with a 1.5 hour wait for my bus pass. I had lovely chats with the others waiting in line and had just reached the front when a woman walked up with a cane and cut right in line. She was served, and when the other people near me became incensed, the transport people said "Anytime someone tells us they are disabled, we have to give them services before everyone else". Now I didn't begrudge the woman her access, despite my total weariness, but I felt like the guys in the "I coulda had a V-8" commercials - instead of standing forever, I could have waltzed to the front of the line and been served an hour earlier.
Pride goeth before the fatigue. Next time I'll bring my cane and take my rightful place at the head of the line. Now, I get to pay for this latest folly with overwhelming tiredness. It was already bad yesterday - I am back to skipping meals in exchange for sleeping - crashing into toxically heavy naps at odd moments...
But perhaps tomorrow I will be better. I want to be, because I have plans for tomorrow I don't want to break....