Quicksand

Quicksand arises when there is flowing groundwater passing through a sandy pit that keeps the sand from compacting. When you hear this, it takes away the mystery of the whole terrorizing quicksand of the movies - the stuff that lies, unremarked, for years, until the bad guy passes by and is consumed. Often it's just the extra that gets sucked in, the infamous "black guy" in Star Trek that accompanies the bigger stars on a planet explore, only to die gruesomely.

Lately, I've been feeling that quicksand-y feeling. It's all part of figuring out what I should be within the framework of my illness and limitations. I no longer have a job, or the mental stamina to think about that job anymore. My children have grown up and they rarely need me now, I'm divorced, I live alone save for a feisty parrotlet named Dora. I write, but I don't know that I write well, or that I have anything meaningful to say.

I purposely moved to this city to force myself to deal with the anomie, to face it head on instead of hiding it behind old friends and things. I wanted to wend my way, find firm ground under my feet.

It's not easy. I find toeholds - good friends that support me, family who care for me, a sweet man who loves me, but the toeholds are still slippery, and I don't fully trust them. I need to find a place to put my foot flat down, to find myself again, to find a purpose for my life, so I don't feel as if I am just using up oxygen and resources (primarily chocolate, but never mind) with no output.

Is it enough to just live and be thankful for that? Is it enough to read and appreciate, and see and appreciate, and move and be thankful? I think we have a responsibility to do more than this.

I try, in my little ways. I try to be cheerful, to bring smiles everywhere I go. I offer little helps. I want to offer bigger helps, but resist because I am no longer a dependable worker. My skill set is rapidly deteriorating, my new skills are slowly developing. And gently, inside me, my MS is slowly dripping to take away the sand from below my feet.

How do disabled people find the will to go on? How do they continue, when they know they are no longer contributors to the sand pit of life? Do they rest on their laurels, as I have been counseled to do? Do they find ways to remain contributors, despite their increasing loss of ability? When do they decide to stop fighting the quicksand, and let go? (which, by the way is supposed to be the best way to stop sinking, so perhaps the Buddhists have it right after all)

I'm learning to stop kicking, but it's hard. I've always been a kicker. I've lived my life as an advocate, a change agent, a promoter of others. This giving in to a disease that cannot be seen and that changes day by day is so hard.

So while I'm trapped, I'm thinking. I don't want to be an "extra" in this world. I still want to contribute. Now to find the direction. And then to wriggle slowly, carefully, over to the dry sand.

Some days you're the tire, some days you're the road

I am so sorry to whine, but for the last month or more, I've felt just like the poor mouse in this picture, shaken back and forth by my MSCat. It just won't let me go, and plays with me and tosses me between its paws and chases me when I think I've got away for a bit.

I can hear it purring with the enjoyment it's having with me.

Last night, in amongst my leg hiccups (back in full glory, darn it), I felt something new - the teeth of the MS, as it bit on my leg. The touch of the sheet was agony. Liquid fire burned up and down my right leg, causing me to gasp out loud. All of my nerves were agitated, so that the touch of a hand was an acute irritant. Even the gentle, caring touch of a dear friend.

Sometimes, I can pull it together for short periods and seem almost fine. I can laugh, chat along with the rest of them, go to events, make love, eat foods that require chewing.

But EVERY TIME, I have to pay for it. EVERY f*^&^%*ng time. After every fun day, I have days of exhaustion and pain. After every laugh, I have a moment of sorrow.

It's almost enough to make a gal give up and decide just to sit about and watch reality TV, especially on days like today when my brain is fine but the rest of me, from my throat on down, wants to pack up and go to Bermuda - and you know what? I'd send it, if I could. Even for five minutes.

Argh.

Unfortunately they are connected, my mind and body. And the final laugh is that my mind is what is wrecking my body, as it degrades. It's all so ironic, for the gal who spent a lifetime working on her mind...

On the good side, whatever wrecks things in my brains also makes me appreciate the wrecking, like the mouse admiring the artistry of the cat as it tosses her up and down, catches her by the tail, whips her about in glee. We are marvelous things, hunters and hunted.

So for today, I'll watch and admire the killing dance. Tomorrow, I'll try to escape again. After all, the cat expects it.

Chewing on aggravation

I am feeling testy, or rather, close to royally pissed.
First, I call "Service Canada" after their threatening letter about my CPP stuff - which I sent them yonks ago and which was screwed up due to their staff's stupidity, so I have to settle it again - and they talk to me like it is all my fault for being a lazy so and so and why HAVEN'T I got those forms in yet, despite moving, errors, MS and all that.... Grrr.

And then there's the having to rent a car so I can get to a doc appointment 2 hours away so he can sign the forms that declare me disabled STILL for a disease that is never going to go away and seems never to be getting better, but I must verify it with my doc every three months notwithstanding this and I still don't have a doc in my new town...

Then I keep running into people who minimize what I am going through, tell me to cheer up, remind me that after all I could be hit by a bus tomorrow (you know who you are) which I KNOW is meant to be comforting, but which has the effect of making me feel my current, very real difficulties are of no matter whatsoever. Yeah, I sure as hell know it COULD be worse. That doesn't mean it isn't pretty bad right now. Of course, no one can see the pain I deal with, or the muscle spasms, or the discussions I have with my bladder, or the fatigue that pushes its way into my consciousness all the time, rendering me speechless.

I knew one fellow who told me I should be rejoicing in my "Freedom-50" - not having to go to work - when really I'd work in a salt mine if I didn't have to deal with this thing and live in ever increasing poverty...

And then there's just real life annoying me - huge bank charges, the cost of a good bar of chocolate, you know. The stuff everyone has to deal with.

Maybe it's cos I've lightened my antidepressant. You see, I was unable to cry. I know this seems like a good thing, but it's one thing to not want to cry, and it's a completely other thing to want to cry and be unable to. It's all part of the numbness (which, I might add, has become totally encompassing again now, making me want to fling myself against hard objects just so I can feel something, anything, other than the interior muscle pain that exists related to nothing). I can't bear it anymore. I need to sense something. So I'm cutting back, and the result is that I don't go around with beatific smiles (which, frankly, were beginning to freak me out) all the time. Now when I smile, I mean it, and it's not just some sweet nimbus-type glow.

Maybe I won't be so endearingly pleasant all the time. This probably isn't a good thing. And maybe I'm in a mood just cos I went to a MS Society thing last night and saw....and became afraid.

Life sucks. And then you don't die. And it sucks forthwith.
Okay, enough grumping. I'm off to do something practical and giving and sensible - volunteering. I'll be better soon. Sometimes, though, I should be allowed to be grumpy, pissed off, annoyed at this turn of events.

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.

Let's get physical....

I'm feeling a bit bound up. No, haven't been taken hostage, or involved in some unusual nefarious activity...
I have an elastic band about my waist, holding a pedometer and an accelerometer - part of a physical activity study I'm in from the University of Oregon. It's a well-organized study so far - they are making me wear the machines for a week to establish baseline activity levels and I fully expect we shall be doing goal setting and all that based on these levels to help me increase activity. I'm familiar with the pattern, having created a pedometer-based walking program (or, rather, adapted an Australian one) for public health in Kingston that then spread across the province. It is funny to see it flip its way back to me.
There's a different aspect to this program, though. Whereas I had regular classes with my groups, in this study, they are linking us through SKYPE to counselors who presumably will advise us on how best to be physically active with our various MS challenges. Could be interesting. Already the webspace is filled with documents I haven't seen before, about stretching and exercise and MS. I am thrilled to be in contact with someone who MIGHT, presumably, know something about the disease and be able to guide me. It's been a long lonely struggle and I am tired of reading info in books and trying to figure out everything for myself.
And while I've made good use of "Patients Like Me" for information about various things, exercise doesn't seem to be a common topic. Either people are training for mountain climbing, or they are too immobilized to do much. What about those of us in the middle?
Hoping to learn ways to stay as healthy as possible....

Dizzy, I'm so dizzy....

I'm so dizzy, my head is spinnin'

Like a whirlpool it never ends...

Today, vertigo.

Tis lovely. I suspect my eyes have been working on this for awhile as my glasses have been singularly unhelpful of late, but I can't see at all without them. This picture to the side makes me actively nauseous.

The vertigo comes because the muscles that control my eyes are going a bit spastic, not working together. It's very odd. Worsens with movement but not the way a regular vertigo does. Just went for a walk and thought I'd best bring my cane as I wasn't too sure how the ground would be moving.

There's something else afoot also - because in each eye, I can focus but only with part of my vision. Very strange. I seem to have a very narrow field of vision today and it is not very entertaining as oomies abound. So I think perhaps this is a listen to things day, wherein I give my eyes a rest. If I'm not trying to read or focus only on reading, not motion, I can cope.

So today is not a good day for watching the telly while trying to complete the scarf I am knitting to keep up with my wonderful ex-mum-in-law's donations for the homeless. I promised her I'd help take on her cause as she is losing her ability to knit, and I will, just not today. Shifting from close to near is too deadly for today.

I blame my car lust for this symptom. I've been thinking heavily about getting a car. I don't have one at present and I miss my freedom wheels. I am feeling limited but really it's my own fault as I truly can get everywhere a person would want to by bus...it just takes time and organization and there is something so freeing about jumping in a car and taking off on a whim. But on a day like today, I realize how dangerous I might be in a car - my perceptions are skewed and the vertigo is dangerously distracting. So perhaps I am better just renting a car when I feel well and need one - and maybe today is just a timely reminder to be grateful for cabs and buses and vehicles driven by others.

I'm hoping the vertigo will pass soon. It's fairly disabling when it occurs - I've had two or three bouts - and it's usually accompanied by eye pain. Not my favorite symptom.

On the other hand, I can feel tipsy for very cheap. Some people pay for this sensation....

getting organized

I am ashamed of myself. For the last few months I've accomplished almost nothing - moved, yes, filled out disability forms, yes, but haven't written much, have been negligent about my diet, haven't exercised enough.
Life lived on you tube is not enough, and I am ashamed.
Mind you, I have met a wonderful fellah, have travelled to Cape Breton, have signed up for a series of plays, caught up with some old friends, submitted a novella and a short story/essay, so it hasn't all been for naught. And I've coped with various changes in my condition, from leg spasms to total visual disturbances to more.
Still I have the sense of time washing by like a river and me becoming more and more uninteresting right along with it.
But today, things change. I've signed up for a physical activity study from the University of Oregon that promises to encourage me to get moving again. I've signed up for two on-line classes - one in editing and one in technical writing. And I've joined my young niece in Nanowrimo (National Novel Writing month) in an attempt to pull together a novel over the month of November.
I suspect my worst deadly sin, beyond gluttony and lust (two of my other favorites) is sloth. It is all too tempting, especially with the fatigue associated with this damn illness, to slump into inactivity of body and mind. Right now, for example, I just got up, and yet I can feel the pull of bed, easing me back toward the horizontal. I am soooooo tired. I suspect it is because my body dances on without me at night, spasming and twisting - when I wake (which I do frequently these days), the bed is all scattered and the comforter has twisted around so the opening is at my face. Pillows are all over the place.
I sleep better with someone with me, oddly, as this is new for me. Another body in the bed seems to control my movements a bit, or keep me from falling into the deep sleep that leads to the dancing. Or maybe it's the physical activity that often ensues that makes me rest better. Who knows?
All things considered, I am trying to think of today as a new beginning, trying to ignore the pains in my body, the fact I can't see all that well today out of my left eye, the fact that my neck is complaining, the greying skies of pending November. Life is fairly good, all in all, and the exciting new projects entice me.