29.4.09

Achoo!

Okay, this is rather unfair. Having MS and being sick with a foul cold (I hasten to add, not the swine flu) is a bit over the top. My poor body doesn't know where to start or finish or ache or spasm.
I've attached a photo of the proper way to contain a sneeze or cough - after years of being told to cough into our hands everyone has now just realized we put those hands on everything....far better to use the elbow. Click on the title to be taken to quite the funniest video about sneezing you have ever seen.
Anyway, another new thing to learn about my newly damaged body - how long does it take to get over an infection when you are on immune suppressors for MS? I've already had a couple of unusual skin infections, and now this respiratory treat, that seems to be hanging on a bit more aggressively than usual, but it could just be a very fierce rhinovirus that enjoys stomping about in the respiratory system...
Needless to say I can't GO anywhere. Just like during SARS, no one wants to be around a coughing person as the swine flu starts popping up here and there.
So I'm lurking and sipping ginger ale. And coughing into my sleeves.

27.4.09

Bitterness

A sign in front of a Baptist church said "Bitterness kills, gratitude heals"
Yeah yeah yeah.
I know.
Doesn't mean that every once and awhile I can't turn on the lemony face and spider tongue and complain about life, does it?
Yeah, I AM grateful - for friends, for enough money to have a home and my planned KD and Tuna casserole for tonight. I can almost receive CBC on my radio out here in the country, I can almost do the things I want to do. Almost.
It just isn't fair when what I've lost gets rubbed in my face, is it? I mean, who can avoid bitterness then? Yes, I know. A truly great person would be able to overcome it. Most of the time I can. Usually with laughter, or a walk outside, or a piece of music or a friend.
Sometimes, though, it bites me hard. And with MS I don't have that sweet little thing called an interior monologue. So out it comes, dripping with hostility and loathesomeness. I wish it wouldn't in many ways, but I know from years of not speaking when hurt, keeping it inside's not healthy either. A happy medium would be nice...but tis not to be.
I have always hated being frustrated. Waiting for my house to sell is frustrating. Waiting to feel good enough to do stuff is frustrating. Waiting for something good to happen is frustrating. I feel a bit trapped of late, and that is never good for the bitterness thing. It fills it, makes it juicy.
So, I'm off to write another murder mystery, killing off people virtually that I feel bitter about. Fun!
Oh, and I'm grateful I found a character to begin with....

24.4.09

The MS Nurse, and the care team

There are two quiet angels working with me on this MS life. One is a very serious sounding lass from the MS Clinic who, I'm sure, must go home and strangle hamsters or stomp ants or cry endlessly because her life is filled with people like me calling and telling her how awful life is today and why won't it get better and when can I get some help and why aren't you taking this seriously when my life is OVER, OVER, completely OVER. She has an astonishingly calm voice that makes me wonder about quaalude use. But she's a lifeline, a source of the arcane knowledge needed for managing this disease. And she returns my calls and for that reason I am developing a fondness out of all proportion for her. I am worried about her day to day life, about how she destresses...I am starting to think of how I can cheer her up when I go for my next appointment...
My other angel is the nurse from the drug company that owns my "Disease Modifying Drug". At first, I was worried her job was to force me to continue with the medication, and as the weeks passed and all I had to show for it were welts and itchy places and maybe a slight cognitive clearing, I grew to fear her call, too. She's a cheery lass, not too cheery as that just wouldn't be appropriate (for some reason everyone involved with MS talks to us in tones of care - either they are terribly sorry for us or they fear we'll go ahead and burst into tears. They have voices similar to funeral managers...which is NOT encouraging...). She calls every month to see how I'm doing. Usually I whine at her too, although she has a sense of humour so I at least try to whine in a funny way. She laughs at my jokes and that makes me feel better.
This month, though, I couldn't wait to tell her about my walking - how I can do it for quite a long time now without pain or cane. I was so excited to say something positive for once! She was cautiously optimistic, but when I went on to say, "But when I feel good, I think I should go back to work", she demurred. "Many people," she said. "find that the liberation of not following their former path leads them to much healthier lives overall. Being able to avoid the stress of working fulltime allows them to remain well, and they often get a chance to do those things they always wished they had." I snorted. "You mean - like eating macaroni five days a week?"
She laughed, but stayed firm on the doing what you love thing.
It's a sign. So heigh ho, heigh ho, onwards I go. Can't ignore advice from an angel...

22.4.09

I dreamed a dream

I dreamed a dream in time gone by
When hope was high,
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving.

Then I was young and unafraid
When dreams were made and used,
And wasted
There was no ransom to be paid
No song unsung,
No wine untasted.

But the tigers come at night
With their voices soft as thunder
As they tear your hopes apart
As they turn your dreams to shame.

And still I dream he'll come to me
And we will live our lives together
But there are dreams that cannot be
And there are storms
We cannot weather...

I had a dream my life would be
So different from this hell I'm living
So different now from what it seems
Now life has killed
The dream I dreamed.

-from Les Mis Click on the title to hear Susan Boyle sing it...

20.4.09

I coulda been a contendah!

Sometimes, the envy of the fit overcomes me. I am bitter, yes. About many things - the military lifestyle with my ex that had me locked in part-time casual jobs for years and years, that made me complete graduate courses in isolation, in fact, live in isolation. Then I started full time work and within a few years had created a niche for myself where I was respected, recruited, wanted for projects, information, research, everything. In 10 years of work I was within reach of executive director positions. And then MS pulled that support out from under me. So now I get to be poor, disabled, alone, tired beyond all reason, in pain, isolated. It is intensely frustrating.
Most days I can grin and bear it, decide to enjoy what life I have left. But every once and awhile, when others jet set about, or casually speak of purchasing yet another computer or car, or complain about being able only to put $800 per month in their RRSP, or when I hear about others in loving supportive relationships, I get consumed with envy and bitterness. Because all that COULD have been mine if I'd married differently, if I'd insisted on my right to develop, if I'd had the spine to push more, if I'd had any guidance or help at any time.
The only time I had such guidance was when I lived in Nova Scotia and had a lovely group of Women friends. They made me feel valued for the first time in my life. And they gave me the strength to push, for the first time. I honor and love these women and I have just got to go see them again.
Oh, and now that my kids, the wonderful people that came from my marriage and my only happy thought about it, are grown up, they offer me advice and support - sometimes wanted, sometimes not, but usually right on the money. They are fantastic individuals and I'm proud to know them. So maybe it all worked out all right after all.

17.4.09

Walkies!

In my town, curled along the shores of Lake Ontario, there's a wonderful free for the walking park called Lemoines Point. Today, with temperatures soaring to the high teens, I knew I wanted to go for a wander there, so I packed up Mavis (my cane) and picked up a new friend, and off we went.
When we got there, I stepped cautiously out of the car. My legs have been in pain for days now and I wasn't sure how they'd react. To my utter astonishment and child-like glee, my hips and legs worked FINE! No pain to speak of, I could stride quickly or slowly, my hips worked like they were meant to. I left Mavis in the car and threw caution to the winds and walked for about 4 km. And I could!!! It was wonderful.
Now maybe it was the company, which was quite lovely. Or maybe it was the sunshine and the birds and the cool but warm day, or the sparkling water shining through the bare trees. I don't know, but I am so happy to have had a days' respite!

Fun in moderation, or what not to do...

So last night I cut loose and went out a-karaoke-ing for the first time. It was such fun, really - and my partner for the evening sang well, if a bit wobbly in the later bits. Might've been the beer that he persisted in buying us. So all the singers gradually sounded better and better, and the evening became somewhat blurry. We're talking 3-4 small beer here, but add that to a balance problem and fatigue and impulse control, and you have a potential powderkeg of bad behaviour. Or fun. Whatever.
Then my poor friend tried to get me up to dance the Texas Two Step. I begged him, please don't spin me! He spun me. I did the first few spins but then he did a multi spin move and that was it for me. My ever present vertigo reached up it's cold squirmy hands and spun my eyeballs about. I could hear the optic nerve a-twanging with the music. Oh, and my wobbly walk made me look tremendously smashed almost instantaneously.
So today, I'm reticulating my splines, as they'd say in the Sims. A little shamefaced at some of my behaviour (nothing dangerous or bad, just a little out of range). And to my everlasting relief, despite the dizzies and general buzz, I did NOT get up to sing.

13.4.09

Weakness and decay

I used to be a strong wee thing. I mean, I'm barely 5 feet tall, but I used to be able to press hundreds of pounds with my legs, lift refrigerators in a single pull, wrestle small trees out of the ground, etc. I'm built muscly.
One of the things MS has taken from me is my strength and it is so FRUSTRATING. This weekend, an unusually strong wind blew my garage door open and pulled the wood apart, breaking it in two. No problem for me, right? I charged up my power drill, pulled out my extra super deluxe deck nails, and headed out to re-attach it. Only problem is I have to lift the door to put a log under it to make it even so I can screw it back in where it used to be. And I haven't got the strength to lift it.
Which means I have to ask for help. I hate this worse than anything. I prefer to think I can do most anything by myself, even if it isn't that great a job. At least it will suffice. But no more. I've already had to hire someone for my lawn maintenance, to clear my driveway, and now this. I used to be able to do almost everything and I didn't appreciate it nearly enough. Now, the mixing of a batch of cookies tires my arms...
Growl. I think I'll head downstairs and try lifting some weights, put a stop to the decay. Maybe. With luck. So that a strong wind won't split me in two...

12.4.09

laughter, or tickling the hypothalamus

This weekend, laughter has been bubbling through my brain, spilling out in crackly mylar-sounding bits, dredging itself up from the base of my lungs. My son has been visiting, and I think I've had more belly laughs this weekend than I have in months, bless his furry little hide. And a friend just called me and gave me an opportunity to laugh out loud again, so loudly I had to pull the phone away from my mouth for fear of deafening him.
I cherish the power of laughter and those that share it with me. I've always been known for my laugh, sometimes told I laugh too much, told people know where I am because they hear my laugh. How much more wonderful is that than being known for a sharp voice, a temper, a sad face, clicky shoes?
I've been on a longish, sad journey of late, and this laugh holiday has been so wonderful. I feel rested, renewed, ready for the world again, all through the healing power of a ha.
I recommend it highly.
(oh, and see Monsters and Aliens to get started)

10.4.09

Easter and loss of faith and finding some



Easter is for me a complex weekend, filled with remembered religious things, the death of my mum (it was Easter Saturday when I learned she was going to die), but really a non-holiday for me. I feel more pagan than anything, yearning towards spring. And the whole crucifixion story is so pagan, really, so descriptive of spring – death, waiting, rebirth.
It was this weekend that I finally lost patience with the Catholic church, and perhaps god, too.I went to the Easter vigil at the church on the base at Shilo to have a little talk with god and ask him why he persisted in killing off the people I loved in horrible ways. The priest wandered in and was astonished I was there. He came over to speak to me, which I didn’t really want since I was in silent argument with the deity and hey, he was interrupting. He asked why I was there. I said, through gritted teeth, that I was there to ask some serious questions as I had just found out my mother was dying. He replied, “Oh, I know how you feel – my mother has suffered from terrible sinus problems for ever!” Then he wandered off. Turned out later he was sent to Edmonton for diddling young soldiers without consent.
It is quite a funny parallel with the story of my dad, wasted away to nothingness by lymphoma, lying in his hospital bed at home, listening to my uncle the priest going on about how he suffered with sinus problems. I remember hearing him making sounds that I thought were crying after the fellow went downstairs, but when I went in to check on my dad, he was laughing so hard there were tears pouring down his face. “Imagine!” he said, gesturing to his wasted body. “Here I am like this, and he’s complaining about his sinuses!” He just kept rocking his head on his poor skinny neck while we laughed together, astonished at the selfishness of human beings and priests in particular.
Still, I suppose we all battle with our own particular demons at any given moment. One would think that a priest could rise above a little at times of crisis. It was like going to see a doctor about crushing chest pain and him talking to you about the trouble he was having with a fungal toenail.
And seeing my dad be able to laugh at that time taught me that the god I believed in was the one that gave us our component characteristics, our sense of humor, our ability to find a glimmer of joy in a dark grey room, our intelligence, problem solving, persistence, and depth. The god who knit together the sweater of our DNA, making it cozy enough for a lifetime of chills.

9.4.09

perspective

Sometimes, some people, not me of course, but some people get too deep in their own struggles with the undertow to look about at others'. It's not that you can rescue those others, as you all battle the tides for control. But it's rude to ignore those in the water with you, or not to notice that some have slipped away.
This has been a difficult week for people I swim with in the undertow. One has died, suddenly, leaving a community grieving. Another, dearer to me personally, has decided to stop kicking. It is just a matter of time til the tides take her.
I understand her decision, and I pray it is an easy tug, a gentle detachment from this planet, and a successful entry to the afterlife she expects and deserves.
It makes my personal struggles seem silly, foolish, unworthy of complaint. Not that I'll stop complaining - I mean, heck, I have my "good for 10000 complaints" card and I'm not afraid to use it.
But just now, I'll be silent. Life is precious, no matter how wobbly.

7.4.09

Median Cumulative Number of Gd-Enhancing Lesions


Was just reviewing the side effects of the Copaxone therapy I'm on to see if my stiff neck could be due to this (no surprise - it could be! As could my generalized state of weakness, my body pain, my depression - maybe...), and fell across this title and it made me laugh.
Gd is short for galadinium or something - the dye they make you sign your own death warrant for as they inject it - the active lesions in MS light up on the MRI when this dye runs through them. But it could also be short for god damned enhancing lesions, or just plain god enhancing lesions.
Perhaps all of them are true.
One of the interesting, challenging, and often wonderful things about MS is the weird emotional reality it gives you. Yes, there's the weepiness - but there also is the infectious and unstoppable laughter, the lift in mood when you discover that, yes, you can hold your head up today...the visual disturbances and vertigo and hearing wobblies that make you feel akin to an origami swan, set sail upon the winds.
Sometimes, it's a gift. Sometimes, just sometimes, the breeze across your face feels like a benediction, because this time you can feel it, a gentle touch that you thought you'd lost forever.
And depending on where those g-d enhancing lesions are, you may have lost your ability to deny these feelings, to overlie them with the sensibility of every day, to turn away from the breeze and file papers instead.
And sometimes, as with the gods in Terry Pratchett's wonderful Discworld, you just need to believe in these feelings to make them grow.

6.4.09

Thunder and electrical crashings

I'm feeling a bit disrupted of late. Not like this picture, but pending this picture, if you know what I mean - the crackly built up electrical feeling that you get in your skin just before a lightning storm, where you can feel the wind just wanting to start up but it hasn't quite yet, where your hair stands on end just the slightest bit.
I'm sure it's because I am bored out of my skull.
The weather is nasty. I am sick to death of driving to Kingston for entertainment, an hour each way give or take, and it is still pre-summer dead here - no one about, stores shut, can't even find a decent newspaper half the time. The library is well stocked with mysteries and romances, and not much else. Rural Canada is all very well but right about now I'd sell my firstborn for a decent radio reception and home delivery of the Toronto Star. Well, I'd probably sell her for a cup of coffee at present, but be that as it may...
I am longing for easy access to friends, bookstores, coffee shops, people to watch, things to do. This tail end of winter combined with my overwhelming fatigue is making me ever so slightly stir crazy. It would be so great if I felt like doing anything, but I am awash in nausea and fatigue and stiff neck and pain and oh god I sicken myself with my self-obsession.
Tomorrow, come hell or high water, I will get out for a walk, finish my short story, and start work on my novel revisions.
Provided I can get out of bed. Please god, let me be able to get out of bed.
Ready to explode.....

1.4.09

Revenge...

"They" say the best revenge is living well.
I've been thinking revenge-ful thoughts lately and they are both refreshing to daydream about and somewhat sad in reality.
You see, living well is not really an option for me. I can live happily; I can live thinking of joy; I can nap freely (part of the MS so not really as much of a treat as one would wish!), but reality is not so much of the living "well" thing, more of the living "poor but cheerfully" thing. You see, they still haven't figured out my EI. So no money for DA. And I'm still not better, although I look wonderfully rested and plump enough to cook from enforced inactivity. I popped in to work today and honestly did not feel the tug, the need to be there, the need to be important there. I am already redefining where I need to be important, what I need to do to make life worth living. I have my plots for volunteering and I vow that if my house sells I will get myself to Kingston ASAP and help out where I can, finally free to help as I wished but couldn't do while working.
Of course, I beat myself up about my shallowness about not volunteering before, not realizing the fatigue I was feeling was part of this disease....
Today, though, I thought I might feel a bit of joy about a wee push of revenge (a cheery smile and hello) towards someone who had treated me badly at work. Instead, I felt sorry for the guy, trapped like the cat in an uncomfortable cage of his own devising. I could fly away, like the bird, smaller, maybe less significant, but so much happier. Even if my wings are weak, and I fly into a wall - at least I get the chance to spread those wings.