medication tango

Being a "patient with MS" means being a patient on a cocktail of drugs, most of the time. They pitch and yaw you, spinning you between spasm and lethargy, dizziness and balance, drowsiness and energy. It's like walking a balance board with wobbly bits. There's temptation on that balance board, too. But you always pay.
Today, for example, I am totally stoned. Last night I took my usual medication to stop my legs kicking violently - it's a benzodiazapine and I've stayed on the same dose for a long time, for which I am proud, as these drugs are addictive, habit-forming, and require, usually, a regular upping for effect. I might, in fact, need to up mine as I wake so often at night, but I'm fighting that fiercely.
And last night I took a full pill for my leg spasms - baclofen - the mystical drug that has put so many people into wheelchairs. See, the same controls that make your legs spasm painfully are also the ones that make them able to hold you up. Usually I take a half pill. I didn't last night, wanting to try to sleep an entire night for a change.
So today I can barely see outta my eyeballs. I am too tired to drink my coffee. Taking the dog for his morning walk was like a trip in my head - I have little remembrance of the event, not of the temperature of the day or the smells of the air or anything. I finished my shower without noticing the plug was in the tub so the water was up over my ankles. Fair enough, I can't feel my feet anyway, but I should have noticed the sloshing...
So, I'll have to adjust down again and deal with the hours of nightmares I have every night, probably caused by my waking in the midst of them. And be tired because of that. And have painful bum spasms when I walk. Tra la tra la!
Added to that, I've been taking big doses of Vitamin D, 4000 iu a day, and now I find out it seems to be tied to heart disease. So will have to adjust that as well.
Of course, my copaxone dose remains the same. Always. No matter what I weigh or how ill I am. This baffles me, and makes me doubt it's efficacy, especially since I don't seem to be holding steady in my disease.
But maybe it's all just drug reactions? Or interactions? Or something?
I hate having to learn new dance steps all the time.

does being numb make my soul numb?

Being numb now for over a year, I often wonder what other effects it has on me. I'm not totally numb - as I've noted, sometimes I have pieces of sensation. The numbness is becoming more profound, though - affecting my balance, my ability to write and type and chop bagels without injury, blocking inner sensations from bladder and bowel and other more interesting places. (Dang it!)
Neurologists invariably say they are less concerned with numbness as a symptom than the other things like muscle weakness and such. It's not supposed to be so serious. And yet, it changes our lives.
 For those of us so enclosed, it's pretty disabling. It disconnects me from the world, makes it seem like I'm watching outside me through a pane of glass - and with my blurring vision, that isn't so great. And it has this other effect, too, of making me feel distant from people, from the world, like I'm shut in a padded room where even the room temperature doesn't make me feel.
Philosophically, it makes it difficult to care. Because I feel distant, I have to constantly make an effort to reach out through the fluff to touch others. It's easier to remain inside, where I don't have to make the effort.
  Maybe the exterior numbness is contributing to depression. I know I've battled depression for years now, and wading around there in the darkness does make things seem muted, edges less sharp, needs less urgent. I find as I get more depressed or more numb, I go for exotic tastes, different experiences, more carbs.
I probably just need to exercise more, to thrash my wooly body through space so that I can get a feeling for where my limbs are. Usually that helps The deep breathing helps, too. The exercise makes me more numb, but somehow makes that all right after all.
But oh, it would be nice to feel certain things again: the fur of my puppy, the touch of my friend's hand, the roughness of sand, the smoothness of rocks, the barrel of a pen when I pick it up to write.
And let's not spend too much time on this, but it would be smashingly lovely to feel making love again. Or a bit more, anyway. 
Maybe I need those steroids. Might help my sex drive, too. Of course, would grow more hair to be fried off by my friendly local electrologist, but it could be worth it...I hear ZZTop are still doing pretty well at their advanced ages...


Here are a couple of things from the National MS Society (which as usual, is the name of the US branch - why they think the rest of the world isn't a nation, I dunno) on numbness. Reality is, if you've got it, you're screwed. Not that you'll notice...


There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation. National MS Society


http://youtu.be/jjcD7a3SB9o

No wonder I feel dizzy

It makes sense that MS would affect the autonomic nervous system, something we don't talk much about since we usually deal with the muscle problems and cognitive problems and all that other messy stuff. But apparently, according to this study, we may be losing venous pressure while sitting.
Which a lot of us do a lot of.
PS: I think it's hilarious one of the researchers is named Venturi.
I still remember reading the deadly serious warnings on our BBQ about SPIDERS IN THE VENTURI TUBES. Of course when we looked at our BBQ after the long winter, mice had nested in it, and their woven bed made out of our lawn chairs had indeed prevented any spiders from seeking a home. But that's another topic.
Note, CCSVIers, this has nothing to do with blockages, so please don't fill my blog with "Aha! Proof!" rants. It's tiresome. And this is a preliminary study...needs repetition. Still, very interesting. I think we should be aware of the autonomic effects of MS as it may help explain the weakness that we feel and perhaps some of the vertigo.

http://www.msif.org/en/research/ms_research_news/quantitative_col.html

Quantitative Colour Doppler Sonography Evaluation of Cerebral Venous Outflow: A Comparative Study between Patients with Multiple Sclerosis and Controls
		summary: This interesting paper published by a group from Italy reports data from 27 healthy adults and 52 patients with MS. The difference between cerebral venous outflow (CVF) when lying down and CVF in the seated position which they refer to as ΔCVF was found to be negative in 59.6% of patients with MS and positive in 96.3% of healthy subjects. Statistical analysis showed that negative ΔCVF values were significantly associated with MS (p<0.0001). However there was no significant correlation with clinical variables. The authors comment that negative ΔCVF has a hemodynamic significance, since it reflects an increased venous return in the seated position, and suggest that in MS it may be a result of vascular dysregulation from involvement of the autonomous nervous system. authors: Monti L, Menci E, Ulivelli M, Cerase A, Bartalini S, Piu P, Marotti N, Leonini S, Galluzzi P, Romano DG, Casasco AE, Venturi C. source: PLoS One. 2011;6(9):e25012. Epub 2011 Sep 22. weblink: click here category: Imaging related research news: click here glossary:     Cerebral     Multiple sclerosis     Nervous system     Sclerosis     Sign

Walkies?

A couple of weeks ago I was at the point of grabbing people walking down the street and shaking them by the shoulders and yelling in their faces, "Are you APPRECIATING THIS??? Are you enjoying that feeling of swinging along, not a care in the world, your legs just doing their job without question?"

It was kindof like during my marriage when I'd gone so long without a kiss I used to fantasize about grabbing strange men off the street and begging them to kiss me so I could remember what it felt like. Fantasize, mind.

You see, I was staring at my new rollator straight in the wheels and trying to imagine my life with the bulky but helpful thing and not succeeding. My muscles were twitchy and spasmy and my balance was shot and frankly I was more blue than the brilliant fall sky.
But bless this disease - for the last few days I've been able to walk - without pain, with my legs actually seemingly enjoying the travel.

It's been FABULOUS.

Have I mentioned it's been FABULOUS???

Of course, there are tradeoffs - I still do numbness, the PhD course, but I can move.
Well, sortof. Today, taking romping chutney out for his longer walk, I noticed a nasty twinge or two in my buttock. And the legs were somewhat less enthusiastic than they were yesterday, when I walked a lot and unloaded a truck and stood for several hours. Who could blame me - It was FABULOUS!

It doesn't matter if I slow down again now. At least I know I can still revert to my happy go walky ways. With any luck.
So, Mr. rollator, off to the cupboard with you! I know you're there if I need you, but for today I'm doing the solo thing.

Fabulous!

Raindrops keep falling on my head....

Sometimes this MS thing is simply magical. It's trippy. It keeps me guessing.
I know I'm going through a flare up - hey, it's been the story of my past months - legs not working right, balance off, the usual. Had a mammogram and didn't feel a thing (blessings!).
And the other night, I took the dog out for a walk late in the evening. I didn't realize it was raining, so I went out in shorts and shirt and no raincoat. Chutney went off to do his thing and I realized I was getting wet - but not feeling it - my skin was gradually feeling colder, and about every few seconds I'd feel a cold prickling on one spot or another on my arm or leg, but overall, I couldn't feel the rain at all. I felt like I was enclosed in a bubble, safe from the rain, though my hair was starting to drip a bit and my glasses were freckled.
So magical!
Of course, there are unhappier things to total numbness, but sometimes, sometimes, the beauty of the strangeness of this disease overcomes me. I hope the feeling will come back one day, but while it's gone, it's kind of cool.
Time for that tattoo I keep talking about.

Swing low, sweet chariot...

Whew. These mood swings do lay a girl low. I'm already hepped up on antidepressants and yet I sink, lower than a frog's belly. Nothing tastes of anything to me. Music bores me. Sex is uninteresting (well, I'm numb, so, what do I expect?). Even the thought of a hot bath is too much.
I find myself oversensitive, tired of speaking to people, yet hungry for company and distraction. My body aches. I want chocolate but can't taste it.  I want wine, but it has no flavour.
It would all make me quite desperate except that I know it's just another sneak attack from the MS - I've been having more difficulty with my balance and my walking, so I know something sinister is afoot, and I expect the darkness in my soul is just a part of that.
I'm hoping to avoid the incontinence thing - it's a rare problem but when it occurs I am desperate beyond measure. I live in dread of wandering about, smelling vaguely of pee, yet I know when and if it does happen, I'll just have to dig deep and keep going on. Like those books that are proliferating everywhere that say "Keep calm and carry on". Or "Eat cupcakes and carry on", which I prefer. I might be able to taste a cupcake.
I know a woman who has terminal cancer. She's not in pain yet, she knows she is going to die soon. She is the most cheerful person I know - handles it all with aplomb, is kind and sweet to all, is the sort of woman who says I love you to her spouse 10 times in one phone conversation. I'm trying to learn from her, as I pray for her. I wish I had her jollies.
Ah, I'm probably just pooped from entertaining folks. And other, grimmer events. I'm sure it will pass, because I just heard a seagull scree outside my window and I had to step out into the cool night and feel the breeze on my skin. I can feel little cheery sunshine lines springing up from my heart. they're faint, as yet, and if I let myself think over the events of today, I'll squash them out. So instead, a cup of tea, some mindless entertainment, and early to bed - and the hope for a sunshinier tomorrow. It's about time for this roller coaster to head up again.

Cheeriness, or how not to constantly spit

Today I arrived at church with my dress on inside out. I knew it was a bad day, that I wasn't fully functional, but that's the first time that had happened.
Totally shrinkingly embarassing. So I laughed and made light of it, joked about my drunken walk to communion (my balance is off, too) but one has to wonder what people think.
Sigh.
So  try to laugh and be amusing but inside I am curling into myself and wishing I could vanish.
I'm just waiting for the moment I become incontinent and don't realize it. Hoo hah.
But I'm sure I'll make a joke out of it.