Office spoons

There's a cute little analogy that goes around about how to pace yourself with MS. It for some reason equates your energy to spoons - every day you start off with the same number of spoons, and you use them up throughout the day - getting dressed is a spoon, making breakfast is a spoon, going to get groceries is five spoons, and so on. Once the spoons are gone, you have to wait til they come back.

So if you plan ahead, you can have your cake and eat it to, so to speak. You just make sure there are enough spoons left to do what you want in the day.

Aha. One problem. With MS, our drawerful of spoons is like the drawer of spoons in the office. You know, the one that one day can barely close because of all the spoons, and the next day has only one bent one in the corner, and for some reason, a pickle fork.

With MS, there's a secret someone taking away and adding spoons. So, though we may think we can do this and that when we wake up, we may go to the drawer and find our expectations have to dramatically change. We have to adapt, every day, to what we find in that drawer.

It's hard to explain this to people without MS (PWOMS). But most people understand about those office spoons.

Fighting the fatigue monster

Feeling angry and generally despairing. 

Went to an event this weekend and had to return early thanks to MS exhaustion. Beginning to realize that as time goes on and the fatigue and confusion hasn't lifted, I am likely left with a bit or permanent cog fog and a lot less ability to do things...

It is frustrating and surely one of those losses I'll have to get used to over time. As with the other losses in MS, it just becomes accepting a new normal, but along with that comes the loss of dreams for the future...dreams of travel, publication, probably even a partner.

It's interesting looking down the skinny end of the telescope as my world narrows. Things close in. Friends become so important, especially true ones. Joy becomes more valued, a hearty laugh worth everything.

I've chosen wisely. I made a move to paradise, Nova Scotia. I can be outside in a wildly beautiful spot in moments. I like the people here, and I have made good friends. Health care is great, the climate is perfect, and whenever I need the sea, it's steps away. Music is everywhere, the library is fantastically accommodating, fresh apples arrive every fall...

But I'm still grieving today.

I'll have adjusted by tomorrow. Nothing that a good rest and some PBS mysteries can't solve...and a few fresh fall Macs from our last run down the valley.

Well, I'm not happy.

Yep, the Mad Sow is positively flipping. Went for a recheck of my eyes and their visual fields today and my lovely opthamologist is sending my report to my neurologist, intimating that things are not better and are, in fact, worse. Mind you, optic neuritis, from what I read, gets gradually worse over a period of days to weeks.  Then it can resolve itself, or, alternatively, result in permanent vision loss. Lovely.
Way back when I first got diagnosed with this disease, I bargained with God.  Okay, I said, I can cope with the physical things (some of them - I really wasn't hoping for incontinence and such) - but leave me my mind. So when the cognitive/emotional things took over, I was a bit miffed. Now I'm bargaining again - listen, I know I can never find my car, or add up my bills and I over tip to extremes because figuring out 15% is just too hard - but you KNOW I love reading and writing and I kindof need to be able to see for those things.
And then parts of my vision wander off. God only knows where they've gone.  The eye doc thinks it is all quite mild right now, for which I am totally grateful. However, I'm wary. And oh so tired, fatigue being the other major sign of this particular flare-up.
I'm not happy. The whole shootin' match has joined in, making my left eye unable to hold position for the test (the vision loss is in my right) and my legs are twitching to beat the band. and if I didn't have a puppy to tend to, I'd be sleeping all the time. Blah blah blah.
But enough whining.
Things can only get worse, so I may as well enjoy what I have now. I'm off to read a book. While I can.

Crashing

I feel like an ant who comes across an ant lion trap.
For the last few weeks I've been feeling fine. No real signs of the Mad Sow, exercising like a crazy thing, doing aerobics and strengthening and able to walk and hike and carry heavy things and balance and move and filled with energy and light. Carrying and toting and sending kids off with furniture and stuff I helped load into vans, helped take off vans. I am busy with my daily endeavours, running here and there and doing important ant-like activities. I'm cheerful, glowing, stimulated and stimulating.

Suddenly I notice the sands slipping around me. It becomes harder to exercise - my balance is off - I start to risk falling as I step into aerobics. I find volunteer things seem too difficult to continue with -my brain won't take on new information. I stop eating so healthily because it's too tiring to even think of food preparation. I get tireder.

Last night, needle sharp pains start in my eyes.  I drive my car against the side of a building when I do a drive-through for coffee. I go out for lunch and am overwhelmed with the noise and chatter and can't quite make my head work properly.  After lunch, I am entirely wiped out, stagger home and crash into bed, too exhausted to move, lying flat and unconscious for two full hours. Now I'm awake, but shivering like I have the flu. I am slipping down, like the ant in an ant lion den, grains of sand slipping under my feet.

Like the ant, I'm going to pretend the jaws aren't at the bottom of the hill. I'm going to keep scraping at the sand grains, hoping to pull myself out of the trap. I'm going to rest tonight, eat healthy things, look after myself with green tea and cuddly blankets and send myself back to bed early. And hope, hope, hope the edge of the pit is closer than it looks.

But there is something nasty waiting at the bottom of the pit.

I like the healthy ant me. I don't want the illness to take me again. I don't. I don't.

Well, shoot.

So here I am exercising like a mad fiend, enjoying feeling my body react like a healthy person's would, enjoying the freedom of being able to walk a bit without having to think about it....
Yeah, it's been hot, but I've tried to keep cool, well hydrated, reasonable about activity.
And then it hit me - today - the awful fatigue.  It's been creeping up on me the last few days - I've been feeling more of the "nah, don't wanna"s and fewer of the "let's go!"s.  I've been crashing asleep in mid sentence and snoring the whole night through. I've noticed a sluggishness in getting up the last two days.
But today - the wall.  I dragged myself to my class this AM, worked blindly through it, came home, and too tired to eat, collapsed onto the sofa and slept the day away.  I'm still exhausted, since the joy of the MS fatigue thing is that it doesn't get better even after sleep.
I'm frustrated. And fed up. And feeling that same old sense of loss that comes whenever I am reminded that things just don't work properly in my body anymore.
And I'm reminded about why I am not at work. This fatigue was a daily thing when I was working full-time.  I was in a fog almost all the time, barely conscious, unable to remember what happened or went on, dragging myself from coffee to coffee to coffee to coffee.  And when I'm so tired, I can't think straight.  It's like I'm looking out through a tunnel - my vision blurs, my hearing seems less effective, I feel locked in to my interior.
It's a reminder, not a welcome one, but a reminder nonetheless. Life has changed forever.
Now to rest and heal and get myself back on track again....

Sleep, glorious sleep....

The MS fatigue is unusual. It makes me believe that Epstein-Barr virus is a cause, because when it hits it is like having mono all over again. It is total, blinding, encapsulating. I shopped yesterday, but was totally unaware of my surroundings, like walking through fog. I ate yesterday, but tasted nothing. I spoke, but made no sense. I moved, but have no body recall. I could not see through the greyness around my eyes. It is really quite a dangerous state, as I am only halfway present, and probably prone to walking into speeding cars, putting my hand on burning elements, etc.
I am, quite frankly, not all there.
Yesterday was stellar. So murky, I felt wraithlike, except for the pain. Which accompanies the fatigue. Probably a good thing, as it makes me less likely to move, thus keeping me from speeding cars, etc., above.
The day passed. I did some things. I don't know what. And I slept, a deep sinking sleep, drowning in unconsciousness, hours passing without note. I slept all afternoon, all evening, and until 9:30 this morning.
The pain is mostly gone.
But I could sleep.....
Dang. I was doing so well. So I did my usual thing - I overcommitted and did too much. When I feel good, I forget I have limitations. It's a good thing as when I don't forget them, I feel a wee bit despairing.
There is really no predicting when the fatigue is going to hit, except that the day before it hits I get a zinging feeling through my body, a jangling of nerves that makes me feel overcaffeinated, slightly disconnected, twitchy. Resting then won't keep it away, but at least I can better prepare for it.
It's adjusting to it every time that is so heartbreaking. My mind refuses to accept that everything, everything, has changed.
On the positive side, it also has its joys. Today, I woke up pain free. There is nothing to compare with the joy of that respite.

wanting it all, paying for it...

My last posting was all about wanting more - well, today the bill came in. I've been having fun, pushing the fatigue envelope, doing things when I know I should just loll about and gaze into the middle distance, but today...today was capped with a 1.5 hour wait for my bus pass. I had lovely chats with the others waiting in line and had just reached the front when a woman walked up with a cane and cut right in line. She was served, and when the other people near me became incensed, the transport people said "Anytime someone tells us they are disabled, we have to give them services before everyone else". Now I didn't begrudge the woman her access, despite my total weariness, but I felt like the guys in the "I coulda had a V-8" commercials - instead of standing forever, I could have waltzed to the front of the line and been served an hour earlier.
Pride goeth before the fatigue. Next time I'll bring my cane and take my rightful place at the head of the line. Now, I get to pay for this latest folly with overwhelming tiredness. It was already bad yesterday - I am back to skipping meals in exchange for sleeping - crashing into toxically heavy naps at odd moments...
But perhaps tomorrow I will be better. I want to be, because I have plans for tomorrow I don't want to break....

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.....

Wheezing and wobbling in worn out shoes

Took my newly stabbed buttocks for a walk today - my first since my dear doggums went to another family who could play with him (as vs lie about and look at him). It was raining, so I had my Kansas City Star umbrella with me - it has all sorts of comic strips printed on it, including the ever-wonderful Calvin and Hobbes . It was a good thing, too, as the umbrella is tall enough to act as a light cane. It swings with a sufficient swagger to make the use of it as this less disabling than it appears.

So off I went, sauntering down to the post office, Queen's Radio Gah Gah playing in my headphones. It was the perfect pace down to the post office...

On the way back, I needed a slower pace - and I had stopped for coffee and a sit down downtown....The umbrella swung with more effect now, and my old running shoes developed a gasp to match mine - each step one shoe says "eeee", then "ahhh". Quite apropos.

Tomorrow, I'm wearing more cheerful shoes, to go with the cane I'm buying. It's all part of the new DA look - cheerful but deteriorating.

Peering through the mists

Today was a "peering through the mist" day - when feeling most out of sorts, my vision narrows and I am enclosed in fuzzy surroundings, with a vague central visual field that works. My eyes squint and everyone who sees me says, "ooooh, you look TIRED!" I do. I look greyish white, my face frozen in the dead energy required to keep me responsive. I can arise, sparkle briefly, but it is like pulling on resistance bands - the return pull gradually gets harder and harder.
I'm struggling - with the change to my life circumstances, with the fear of disability, with the loss of my future career. I don't know where to put my feet next and freeze, unable to move.
Late in the day today, I had a call from a colleague and friend who knows about these struggles first hand as she watches her partner go through them. She was a beacon in the fog - a mellow warm yellow light, leading me forward.