Oh the sweet sweet aching disappointment of MS

I had my arthritic knees replaced in December - both of them at the same time - to help me cope with the inevitable MS flare up post-op.

I didn't go through a slump, really, denied it totally. Put myself through physio and lots of exercises and trained myself to go up and downstairs despite the warnings from my legs that all was not nice in there. Foot spasms, calf spasms, aches in my thighs, rock hard muscles.

So, now, three months later, I fully expected to be fine. I worked so hard on my recovery, I foolishly thought that my MS would cooperate with me, help me along. I am walking straighter, faster, longer. But all is not well.

Instead my MS is thrashing me through pain and spasms every night, non-dependent on my activity level.

If one more person tells me I need to pace myself I will go mad. I've lived with this disease for ten years or more and have learned how to pace myself. I can't bear much more advice to "rest", "you're doing too much" etc.

With this disease, it is so easy to simply stop. I fight this every day. It's not good for me in any way to stop. It's better to do something.

But it is heartbreaking to think you are making progress (as with my knee replacements) only to realize you remain in the same place in the end...

Sigh.

Must go stretch...

Need your input for MS and Intimacy book!

 While ago I posted a link to the Survey Monkey survey I'd put together for the book I'm writing with Karen Kalinowski about MS and Intimacy.

In case you don't know, I'm a former registered nurse, epidemiologist and freelance writer, living with MS. Karen is a Sex and Kink educator who has worked extensively with people living with disabilities.

A good many answered, but more input is needed. Some of the comments said that there didn't seem to be much focus on partners' opinions, so I've created a secondary survey for partners.

Both surveys are COMPLETELY ANONYMOUS. There is no was I could ever link your response to you, your location, anything about you. The online survey people can't do that either.

It does allow me to compile responses and gather information that will guide the book's creation. Won't you please help me put together a resource that will help you and your partner as you live with MS?

The surveys are below.
Only ten quick questions each...

Persons with MS: http://www.surveymonkey.com/s/LSLN9XN

Partners of persons with MS: http://www.surveymonkey.com/s/NCTJSLM

Not the hands, please god, not the hands!

I've dropped my keys about 20 times in the last few days. I can't open milk containers anymore without the use of a knife. Bits of paper have to be attached to me with pins or they flutter to the ground.
My hands are losing their grip.
How damn annoying.
I just started loving knitting. I have oodles of yarn to make into things. Yet my hands can't handle it anymore.
I can't read big books (I like big books and I cannot lie). Having to read on an ereader, which is okay except it dies regularly. Grr.
On the good side, I've started needle felting. And since my fingers are numb, I can stab myself with gay abandon. As long as I'm felting red things. To soak up the blood.
But I type my thoughts. What if I totally lose that? Yeah, I can use that dictation software but it's hard and bothersome and just not as much fun as it should be because you have to speak punctuation. Period. Which is annoying. Period. Or is that exclamation point? Question mark
You see how it could be frustrating comma especially since I don't often think of punctuation and just let it happen period Which accounts for a lot of my editing problems comma perhaps period.
New paragraph.
Arggh. And then there are the mystical misspellings. When I get on a  good dictatory run, I don't watch the words form on the page (partially because it is a bit slow and it's a bit like listening to a recording of you speaking just a bit slower than you do). I go back to reread and find the punctuation parts and realize a completely different story has been written.
It's not that it is necessarily a BAD story, but it isn't the one I was writing. I feel like I am in a partnership with HAL. (I wouldn't erase that if I were you, DA)
I need my hands. Take my legs. I've already seen them going. Bits of them are dropping off - the toes went first, numb and no longer available for location. My hips are on temporary strike and need to be promised increasing wages to cooperate. My knees just laugh at me. Shaving my legs invariably results in loss of blood. They need support, preferably 4 points of it.
But my hands - I like them. They are squarish, man-hands, designed for work. And I want them to work. Please?

Walking is hard!

I feel a bit like those awful Barbie dolls that used to be sold some years ago that would say, when squeezed, "Math is hard!" I can empathize with Barbie, with her spastic always pointed feet and her knees that bend improperly, her fixed hands. My body is a bit that way today, as the flare-up I've been having for the past week adds to the foolhardiness of walking all over the place when visiting my son - it was a lovely tour of Waterloo but I foolishly left my cane at home and had to buy a new one halfway through the day.
So we wandered on, and I got such a good feeling about wonderful Waterloo - I finally saw it as my son sees it - accessible, filled with easy transit connections, charming shops and restaurants, pleasant people, pretty sights. At least until my hip started giving out.
Today, I have a puppy who has spent the weekend in a kennel and returns expecting fun fun fun and a body that wants sleep sleep sleep, preferably lying flat without a young pup slobbering all over me. Perhaps I can persuade him for later in the day...Meanwhile, I dragged myself out for a walk before the expected rain starts.  Chutney the poodle kept looking back at me, waiting for me to speed up to my usual pace....but it was all I could do to put one leg ahead of the other. And now, typing seems beyond me.
I keep reading about these people who are desperate for CCSVI treatment who have fewer symptoms than I do. I don't understand the urgency.  Sure, life is grim sometimes, like today, but rest and self-care often improves things and I feel somewhat better. I'd still rather wait and see what comes of the research. All of it, including the research into other areas...

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

Lawsy, how I DO hate the summer!

I never thought I'd get to this, after a winter of grey and grey and suffusions of grey, but I hate summer.
I hate the relentless sun, the humidity that makes my sweat just lay on my skin with nowhere to go, the hot breezes, the sounds of lawnmowers and trimmers and motorcycles and wonky air conditioners. I crave shade and spring and fall and the kind of air that enlivens me rather than the heat that makes me lie about like a pole-axed sheep for most of the day.
The plants bug me.  They are so untidy. The heat and humidity have caused them to grow all leggy and unattractive and only the weeds seem to be winning the battle for the sidewalk cracks.
I hate wearing clothing this time of year, and yet, it's expected. I hate seeing people who deny these expectations. Men, for example, who wander about shirtless.  It pisses me off, me in my bra and shirt required by law (and, frankly, common decency, as an over 50 plump woman does need to shield somewhat).  Mind you, over 50 fat men don't seem to feel the same requirement.
Every day with MS, the heat saps me more and more, to the point where I feel lucky if I want to do anything.  My brain glides into neutral. Then reverse. Then it falls off the cliff.
I loll about.  I read novels. I forget what I read. I drink water. I loll.
Making food seems unnecessary and unpleasant, so I live on grapes and slices of cheese.
I get impatient with the body and brain that seem to only want to lie about, but I'm trapped, pinned like a butterfly to a board. I force myself to exercise every morning, before my body gets the message, but crash into dead sleep at eight every evening. My feet are cramping more and more, legs twitching more, as the heat gradually shoves my MS buttons.
I long for those first few cool breezes of late August...

So, what was that?

A few weeks ago, I heard disturbing news about an associate of mine. He had been living with MS for years, with no flare-ups or issues. Yeah, his life was no picnic for other reasons, but his MS was quiescent and that made me look at him enviously.

Then, just after Christmas, he woke up paralyzed on one side. No notice, no foreshadowing. It was like a climax in a story with no lead up. Stunning, and a sharp reminder about the utter unpredictability of this disease.

So today, I was well-rested, happy, feeling good. Off I went to get groceries, looking forward to replenishing my scant cupboards. I get to the store, and the buzzies overcome me. Suddenly I am having trouble doing up my coat, feel unusual, and my brain is not functioning. I start walking away from the cashier, and my legs are considering a work to rule approach to walking back to my apartment.

At two points on the way home, I almost gave up and begged for help. My legs felt as if I stood still for a moment they would never move again. Even when moving, it required messages by telegraph and then letter to them to move them forward. The messages went slower and slower, and by the time I reached my doorway, I was exhausted.

Unlike the "walking through jello" sensation that is so familiar, this was more of a loss of communication. My legs weren't just moving slowly, they weren't listening to me.

I came home, crashed into a chair, gradually recovered. A few hours later, I decided to try a work out - just a casual 40 minutes or so on the Wii Fit, mostly Yoga. The legs remain spastic, hip joints sore, rest of my body aching and stiff. I feel like those old Barbie's that had their hair on a turner thing - you could pull it out and then roll it back in. My body feels like it is in the rolling in stage - all the ligaments pulled in tight.

It's a new sensation, and not one I like.

a bag of trouble....

I feel a bit like a bag of calamaties today. It's a beautiful fall day, leaves dancing in the streets to the directions of the wind, an aluminum can spinning dervish-like along the road and executing Michael-Jackson-like poses...
The walk along my road was breezy and sunny, filled with people enjoying the respite from the rain, saying that big city exhalation of a hello as they walked by me.
I was focusing. I think I have figured out where the next big lesion dwells. It's got to be on my left hemisphere, as I am developing foot drop in my right foot that makes me need to concentrate when walking or trip. I have foot spasms in both feet, but the right one is much more extreme. My right bum is knotted up, and completely numb. And the left side of my face is in spasm and pain, eye tearing all during the church service I attended.
Add a chronic neck pain on my right side and I could wallow in self-pity for hours. Instead, I wish I could peer inside my head, see what is going on, tease out the frayed nerves and wrap them with electrical tape...would love to know what is happening in there...so that at least, as I curl up my feet to keep them from dragging on the ground I could feel slightly in control.

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....?

Oh what tangled webs we weave..

When first we start to believe....
Yesterday I felt great, super great,, body happier than it had been in ages. I actually didn't have any pressing complaints about its messages to me, I thought we had come to some sort of agreement. I exercised, but not too strenuously, just enough to get my body moving, and it felt good. I went for a walk.
And then bedtime hit - unspeakable pain. Writhing. I slept (haha) in my bed in all possible directions. No matter where I put my limbs, they were irritated, twitching, aching like toothaches all over my body. My feet spasmed, my legs jumped, my arms moved without my mentioning internally that it might be a good idea. My fingers played forgotten piano sonatas (from Stravinsky - some atonal something).
The only thing I can think is that some of the stretches I did yesterday aggravated a lesion in my spinal cord. I've always had problems with my neck, which is where the lesion is, and stretching my neck is not overly comfortable.
I've had a few nights like this. I lie there, too exhausted to get up, afraid of the pain that will scream through me when I try to stand (cos it does). After the first few agonizing steps, it's okay, but that first step is a doozie.
It is HORRIBLE. And now I'm afraid.

Acupuncture, or, Oy Vay, I have such a pain in the butt!

Went to my excellent physiotherapist today for an assessment of my legs as they are feeling distinctly weaker. She examined me and agreed, then suggested a technique she had tried for another MS patient that seemed to help her feel sturdier when she was walking. She inserted 3 acupuncture needles deep into my buttocks muscle, and attached them to a machine that sends electrical charges to make the muscles contract. She turned to electricity up to level 2, which was enough to make me cry out. The electrical current cycled on and off for 10 second bits for 15 minutes, then we switched over and did the other side.
Well, I'll wait to see what things are like tomorrow, but OH MY GOLLY, I am not a happy camper right now. My bum muscles are in serious spasm and my whole leg is unhappy, alternately sore and just plain toothachey. The rest of my body seems to have decided that since one part is cranky, the rest should get in on the act, and my neck and arm muscles are tense and sore.
So, I'm off with an antispasmodic to reduce the pain and a cozy bed to warm the muscles into relaxation. With luck this punishment will mean I can walk better tomorrow....