Car Trip...

My darling aunt passed away last week. She lived in St. John, NB, a pesky part of the province that seems severely underserved by public transit access. The only real way to get there is by car. The only way for me to get there was to drive myself, 2500 km. roundtrip.
But my aunt was such an important part of my life, and her children and husband are so precious to me that I couldn't conceive of not attending her funeral. So I hopped into my long-suffering car with my long suffering body, and headed out, thankful for cruise control.

I also wanted to prove to myself that I could still do this sort of thing. With increasing disability on the horizon, I needed to feel that I had a starting point that would grant me some time.

So off I went. Other than an overwhelming feeling that the whole country could easily be hemmed in the middle, taking out some trees and stitching the quilt together (there are many many many trees in Quebec and northern NB, almost too many to understand), the trip there was tolerable, I stayed awake, and I was doing okay.

Day two of being there brought on the Mad Sow. I leaned on relatives to drive me about as the thought of negotiating St. John streets was scary. I couldn't understand the map I bought and spent several moments driving in circles trying to find my cousin's home. My feet started spasming, my legs started wobbling.
By the trip home, I was weaving attractively as I stopped in the rest stops, I'm sure making more than one motorist vow to stay out of my drunken way. I fell asleep a couple of times, but pulled over for coffee and rest. I arrived in Ottawa twitchy and spasmy, but I had made it.

Today, I'm recovering. Barely able to open my eyes....but I'm glad my MS hung out in the background long enough for me to honour my aunt, a women of true grace and grit under duress. May I be half the woman she was.
Much love for my aunt Dorothy Anne - wishing you rest.

But what about sex?

Woke this morning thinking about love and lust and all those things that make the world go 'round and the birds sing their throats out in my backyard. And got to chuckling about what the MS clinic had to say about it all. I told them that I was lacking sensation, and that as a young 50 gal, this was leading me to some frustration...
So, here was their suggestion. "Some people find that if they put a bag of frozen peas on the area for a few minutes beforehand (as it were), the sensation gets better..."
OMG. So, so here you are, in amongst the awkwardness of dating sex, where you are trying to undress without revealing too many stretch marks or that unwise tattoo or the fungal toenail or whatever body imperfection is playing with your head that day (I remember obsessing for a week about my short toes, for example), AND you are trying to get socks off without bending into an unattractive pretzel, all the while trying to keep the sexual tension high because let's face it, over 50 guys need that....
And now you are supposed to excuse yourself for a minute, race to the freezer, and put frozen food on your groin, all while "maintaining the moment"?
The mind boggles.

Hmm. Maybe Cool Whip.....

A stitch in time....

I feel as if I am completing an intricate part of a tapestry panel - one of those bits where the stitches are new and you have to look from the instructions to where you are sewing several times before the stitch is complete - and then do the same thing for the next stitch.
I'm learning, slowly, how to do these new MS stitches. And I'm making progress on the tapestry that is my life.
Fortunately, I've had good teachers as I progress. Old friends who are supportive, family members who keep me sane, newer friends who tease me and make me laugh, MS friends with whom I can share this adventure and contribute some teaching of my own.
The challenge of the changing stitches, the need to fit them in around the pattern I've already done, makes the overall picture immeasurably richer, even as it makes it more dificult. Sometimes it feels like the project is too big, that I've messed it up, that there is no reason to finish.
Then my helpers arrive, and show me how much I've done already, remind me that I still have more to add. Bless them. And give me my needle back. I have a flower to add in this corner here.....

My dream wheels, phase two

Time and MS wait for no woman. After my clinic visit yesterday I realized that hey - yep - got this thing. Gotta learn to live with it as well as I can. Nope, it's not going to go away.
So what do I do? Look at cool toys. When I was first diagnosed I got all excited about the thought of a walk-in tub, like those ones on TV. Now I'm thrilling to the thought of a big wheeled Rollator that will allow me to walk fast for long distances and rest when I need to. Cool, huh?
And then I still have a scooter to look forward to.
In a way, hearing and seeing my right foot's lack of movement was a bit - I dunno - affirming. The thing with MS is you look fine to people - but you know you aren't. Everyone tells you to buck up, think positive, take supplements, fight. But your brain doesn't always listen to those cheerful encouragements and things do change. And they don't change back. And in a way, not fighting this is thinking positive. It is accepting the real limitations MS places on you and trying to make the best life you can, nevertheless.
There's no point in shaking your fist at the rain. But you CAN get a cool, mega trendy umbrella to make the sky bright.
Rolling onward as long as the wheels will let me...

MS clinic day

Well, well, well. Or rather, not so well, not so well, not so well.....
Today was my biannual MS clinic day, where I get to meet with the neurologist and the MS nurse to discuss my various symptoms and the nothing they can do about them.
So today, I talked about my right leg, and how it needs a fair bit of encouragement to get moving. We did a little tap test to see if I could tap my foot. Left foot - Allegro. Right foot - Largo. No wonder it seems to be having troubles walking. My right hip flexors: unimpressive. Left: better. Balance - well, It was handy the walls were close by.
None of this is stuff I wasn't expecting, of course. It's just a bit interesting having it evaluated and finding it considerably worse than 6 months ago.
So I asked about the numbness thing, the weird Stay-Puft Marshmallow feeling that surrounds me all the time, puts me at risk of burning myself, etc., ruins my good time...(although searching for the spot where DA can feel today is a fun game). The MS nurse, smiled at me then looked away and down...."well," she said, very carefully and slowly, "Usually the numbness goes away, but when you have had it for such a long time....it...usually...stays..." Both she and the neuro were very careful to offer no hope of any recovery - the best I can hope for is a slowdown of symptom development. Not that that has been happening to date, mind you.
So, Stay-Puft I am, and Stay-Puft I will remain, I guess. They did like my idea of the nifty rollator, but I might let my hair go grey first. It just seems wrong to go rolling along with brown hair. Fortunately, it's just a dye job, so I won't have to wait long.
Overall outlook: Life will suck and then I won't die.
Well, at least I won't have falsely raised hopes!

GROWWWWWWWL

Well, I've been whining about life on Canada's social safety net or lack thereof - but now I've heard something that makes me really really mad. I always knew Ontario Works payments were criminally low - they are designed to make starvation the alternative to seeking employment. ($572/mo for a single person). Of course, this assumes an environment where jobs are available even to those with no money to clothe themselves or take care of themselves. That is horrible enough.
But for people who qualify for ODSP (the disability support plan), who have been deemed by the mighty province to be unable to work, the rate is equally horrid. Yep, they pay some of your drug bills, but the additional expenses of living with a disability aren't always covered. And the benign rate offered by the government for disabled persons? Oooh. $1072 a month. You'd better hope you don't want to live in a city or anything. Or a house. Or a decent apartment.
I've just been looking at apartments in Ottawa and for a one bedroom, it's over $700. Add the costs of food, utilities, transport, and clothing and you've got nothing. Oh, and yeah, you can get coverage for some things, but that means your doctor has to fill out yet another form. Because one just isn't enough.
I feel stupid that this outrage is just hitting me now - I've always known in the back of my mind life was horrid, but I've had the privilege of meeting a few folks on one or the other of these generous plans lately and I am so impressed they haven't rioted in the streets - or maybe I'm not. I know they are tired from lack of food and housing, and I know they fear the Provincial overlords who spend millions on checking for welfare fraud instead of spending it on the people who need the money, but this is outrageous. And it's my fault I've never taken the time to research the actual rates, relying on the Province to act somewhat in line with their stated goals - fool that I am!
For me, I have some luck - I have been approved (I think) for my businesses disability program, which will give me a living amount, though I won't be rich. But these people - so many of them - there must be something we can do!
Nah, it's too tough to think about. Let's watch "So you think you can dance" one more time...GRRRRRRRR.

I'd like you to meet....uhmmm...

You've got to love MS. It's like a constant game of "Who's on First?" One day, the legs aren't so good. The next day, for some reason, I can recall words (and whomp a friend in scrabble) but can't add up the scores (hmm. Perhaps did not whomp after all..) The next day, I turn to one of my best friends to introduce her to an acquaintance and forget her name so completely that I don't even have the first idea of what it is. No initial, nothing.
Fortunately, everything doesn't yet hit at once, so I can still smile with my facial muscles and pretend it doesn't matter.

Yeah, yeah, everyone says this happens with age, etc. But I'm not old. 50 is NOT old. I am but a young lass, still yearning to grow. Just not sure what grow means in this context.

Actually, I feel a bit like chickweed. I grow in all sorts of wiggly areas, trying this and that, attempting new skills like learning Spanish, following old paths like walking, but with a new angle (literally!). It's an adventure, and yet I still feel I have some power to cover the earth before the killing frost.

Life can be good, as long as I have understanding friends about me. Just don't ask me to remember your names!

It's all fine and dandy

Until I try to do something....I've been coasting on an excellent writer's conference for the last few days - feeling as if life might have a purpose after all, as if writing might be a place for me to put my head, holey or not. It has put a wide smile on my face and a song in my heart.

Then I dared a walk downtown. It's a whole mile round trip and I foolishly picked up flour and sugar at the grocery store. With bags and cane and etc, twas a difficult drag home. I made it, but realized that ol' right leg just isn't worth much anymore - without the steadying cane, I swung back and forth across the sidewalk like I'd been tippling....

Hmm. Tippling. Sounds like a good idea. After all, most writers drink, right?

Money money money

Money money money....or rather the lack of it! I'm at the end of my government-sponsored holiday, also known as Employment Insurance (hahahaha) for disability. Mystically, the powers that be have determined I am only unemployably ill for 15 weeks. Hard to rationalize when I have a chronic thing like MS, but there you go.
I am now waiting for the "long term disability" insurance from my employer, which I believe is arriving at the end of July. Because they pay it in arrears. Of course.
Meanwhile, the house is unsold, and expenses mount. If I were to take a part-time job, I'd be punished by having my disability cut. Of course, I don't know it I am up for a part time job anyway, after sleeping all day today after a visit to a conference on the weekend...
Phooey. And I now have to start paying for the health insurance I daren't let lapse...not with meds at $1400/month!
Not sure how this is going to go.
Suffice to say I pick up dropped pennies these days....

Two kinds of people...

I've just finished re-reading the luminous "Coventry" by Helen Humphreys. It's a lovely book, filled with light and darkness, tales of the bombing of Coventry and the grace and selfishness within that context. The two main characters are Harriet and Maeve, and the author captures their spirits exactly in two short descriptions.
Harriet, despairing of life, is left with nothing after the loss of her husband. "All she has left is the outdoors, and most days this is a noon-hour head down tromp through the muddy farmers' fields that surround Coventry, where she tries desperately to be moved by a single dog rose or the flower of the blackthorn hedge."
Maeve, who has had a challenging life, views it in the opposite way. "But she knows that she has been happy. Her life has been perfect. Even on the bad days there is always something to cleave to, something small, the way the leaves show their undersides in the rain or the way the rain falls in great veils, sweeping down from the darkened sky."
Rereading this was an echo of the conversation I had had that evening with a dear friend, where I described the world as filled with two kinds of people - those who see things and judge them and those who see things and appreciate them.
I've tried to be the appreciative sort. Sometimes this leads me down dark pathways that I don't realize are creepy until I am too far down to turn back. But in my work, being critical was what I did - it was my job - and it gradually turned me into someone I didn't want to be.
In a way, MS has liberated me from that, requiring me to appreciate the little things, the small joys, since looking too critically or too far ahead leads to depression and despair. Sometimes, as with Harriet, my search for cheering sights is a grim, head down one, but I aim for more Maeve in my life. Like Tarot's Fool, I like to look upwards while not necessarily watching where I tread.

Wallowing in self-muck and the saving grace of a good soundtrack...

or...walking on sunshine.....(click photo for Katrina and the Waves)

Today, the sun came out a bit, and the chill of the unseasonal June lightened a little. I'd been wallowing a bit in self pity most of the day, matching my mood to the sky. My whole body was restless with the sunlight, wanting to get moving. I've been listening to books on my MP3 player as I walk, but my book player was tuckered out, so I took my music one. Good choice - I was immediately surrounded by my "walking tunes" - fast paced rock and roll, Joe Cocker singing Leonard Cohen's "First We Take Manhattan", Glass Tiger's one hit wonder "Don't Forget me when I'm Gone" that always makes me smile, Queen, Smoke on the Water, more. The fast beat let my legs move, and while I wasn't quite in the singing mode I usually am when working out is going well, I was moving swiftly and with a smile.
Ran out of speed when I was almost home - it's funny with the MS - it's like your battery runs down, and your legs move slower and slower. even if you want to keep up. I crept up onto my lawn very very slowly, but I'd made it around a long town route in record time. Thanks tunes. And thanks, handy cane - as I swing it along I can travel much faster and safer than I could have alone.

I want a re-deal....and more access to Community Chest...

One of my MS friends pointed out that those of us with MS should really get a "get out of the rest of life's shittiness free" card, to use over and over again. After all, MS brings its own lovely load of the brown stuff - why should we need any more?
But it's not so. We still get nailed with the everyday things: the inconstant lovers, the thoughtless friends, the disastrous investments, the grumbly/sick/cheery relatives, the other health challenges.
Hardly fair, and I'd like to say that, while I am willing to take my share for the team, I think I have a big enough chunk for right now.
I am now on two months without any income. The 1984-ish titled "Employment Insurance" only gives 15 weeks for disability. My Disability insurance only kicks in at the END of the following month, although coverage starts as of the beginning. It's just too bad my mortgage and etc. require payment in the middle of the month, isn't it?
I need one of those Community Chest cards that says "You are judge at a beauty contest - Win $50" or something. But the cards being dealt now don't include that one....