December 31, 2009
December 30, 2009
Increased blood vessel density and endothelial cell proliferation in multiple sclerosis cerebral white matter.
décembre 30, 2009 par Oldcola
Increased blood vessel density and endothelial cell proliferation in multiple sclerosis cerebral white matter.
Holley JE, Newcombe J, Whatmore JL, Gutowski NJ
Neurosci Lett. 2009 Dec 24; doi:10.1016/j.neulet.2009.12.059
Multiple sclerosis (MS) is primarily considered an inflammatory demyelinating disease, however the role of vasculature in MS pathogenesis is now receiving much interest. MS lesions often develop along blood vessels and alterations in blood brain barrier structure and function, with associated changes in the basement membrane, are pathological features. Nevertheless, the possibility of angiogenesis occurring in MS has received little attention. In this study we used triple label enzyme immunohistochemistry to investigate blood vessel density and endothelial cell proliferation in MS samples (n = 39) compared with control tissue to explore evidence of angiogenesis in MS. The results showed that in all MS samples examined blood vessel density increased compared with controls. The greatest increase was found in subacute lesions where numbers of positively stained vessels increased from 43.9 ± 8.5% in controls to 84.2 ± 13.3% (P = 0.001). Furthermore, using an antibody against endoglin (CD105), a specific marker of proliferating endothelial cells, which are characteristic of angiogenesis, we have shown that vessels containing proliferating endothelial cells were more pronounced in all MS tissue examined (normal-appearing white matter, acute, subacute and chronic lesions, P ≥ 0.027) compared with control and this was greatest in the MS normal-appearing white matter (68.8 ± 19.8% versus 10.58 ± 6.4%, P = 0.003). These findings suggest that angiogenesis may play a role in lesion progression, failure of repair and scar formation.
See also:http://www.angio.org/ua.php for a description of angiogenesis. It is what is responsible for diabetes related retinal changes, etc:
December 20, 2009
What is a sweet little trusting soul to think? I am so so tired of having my happy little illusions of the world crushed. It's bad enough the economy is tanking, the wars continue, my body continues to fall apart with MS and my dear ex-mum-in-law continues to perish from ALS.
Do we have to dash my hopes that there is some good in the medical world?
I've worked in the Ontario Community Health Care sector for years. I know how very few patients most of the physicians in this salaried model take on. I used to administer these docs, and on my teams, ever doc had at least 1000 patients, supported fully by a multidisciplinary team. The CHC that I have applied to for care - their docs have way fewer patients. Some have only 400-500.It is an appalling waste of resources. And they will not accept me as a patient because I am complicated, despite their avowed focus on people who suffer challenges. Well, I'm broke, unemployed, disabled, and without a physician. Surely that counts for something.
I am a client of the MS clinic in my former town, and guess what? They never offer any solution for anything, and even though they return my calls, they never want to see me or evaluate me. They expect me to just suffer on. They are of no help. They have kept me on an expensive medication that is not working despite my reports of same. They cancelled my appointment even though I have been complaining about increasing symptoms. They suck.
And then this, an article from a man who very clearly delineates the awful fighting lines of the various players in the MS game. I try to believe the people out there are trying to make us better, if not well, but his arguments make a lot of sense.
Suddenly, I feel a bit like Little Red Robin Hood, cheerfully setting off down the forest path to do good, only to start hearing suspicious sounds in the woods around me.
Unlike, Robin Hood, I have no intention of being eaten by the wolf. I am starting to get angry now. My faith has been misplaced. Even though the only person who has been kind to me in this journey (of the medical side) is my Copaxone nurse, Bonnie, I am still furious about the conflicts of interest that seem to be dragging any hope away.
December 18, 2009
I have to admit I fell for it, too - one whole day of my life spent dreaming and hoping and wishing and wondering about what life would be like when I was all better, instead of gently deteriorating as I am now and have been for the past 20 years. What would it feel like to actually be well? What would I be like with no limitations? It was intoxicating.
Then my questions started raising their ugly heads...like how safe this procedure really was... and how come so many people needed to have multiple operations...and why would this have such dramatic results when most of these people necessarily had generated collateral circulation from their brains (or else they would have been a lot worse off or dead).
And why was there no difference in outcomes 18 months after intervention between people with progressive MS and control subjects? Surely there should have been some slight improvement, shouldn't there? Unless we are talking about a complex disorder here, perhaps more than one....
I am reminded of the discovery that breast cancer was really two different diseases depending on when it occurred in a woman's lifetime, that it responded differently to treatment depending on which disease it was. I'm also reminded of ulcers and the discovery than antibiotics cured them, most of the time.
Fact is, we often get things wrong first time around in medical and other research. Rather than immediately jumping on those cautious about the possibilities and accusing them of wanting to keep people ill (which I imagine must be very dispiriting for the researchers who want to replicate things and ensure they are right before jumping on the bandwagon), we should be thankful for the doubters.
I know how the MS people feel, being one myself. I know desperation for cure. I also used to be one of those people who wanted to always move forward, without looking behind to see what was falling off the truck as I sped along. I've worked for people like that, too.
But being off and unwell with MS for a year now, almost, has given me some perspective. Let the experts review things. Yes, push for research, broad, diverse research that may give us some clues. Push for free research, unbound by results orientation, as free research is often where the "ahas" are found, rather than in research that looks at how to make a pill 0.00002% more effective. Let the scientific brains do their random walk and discover miracles.
But wait until the proof is in before leaping to try untested remedies.
What worries me is that many people will beg for surgery, get it done, and die or suffer greater problems, and this will end the funding for further research into this promising area of CCSVI.
Be patient, people. We are all desperate. Breathe deep.
December 17, 2009
December 6, 2009
TN, both acute and chronic, is a frequent gift from the Mad Sow.
"Trigeminal neuralgia (facial pain) is characterised by brief episodes of intense, stabbing, electric shock-like pain on the face. These episodes occur spontaneously or can be triggered by light touch, chewing, or changes in temperature (i.e. cold). The pain is so intense as to be completely disabling. In addition, weight loss is common because oral triggers prevent affected individuals from eating enough to maintain adequate nutrition.
A less common form of the disorder, called" a typical trigeminal neuralgia", may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs."
Okay, this is all very jolly, as is the comment that it is a very treatable condition. Surgery, medications, nerve assassination all can help...however...
First, one has to see a doctor to have it treated. As my MS clinic makes a game out of not seeing patients, this seems unlikely to happen in my case.
Secondly - weight loss? Well, that could be true - fact is, with the pain and my difficulties in swallowing, there are few things I have the will to eat. Unfortunately,
What I do notice is fatigue and pain when I have to talk, always present facial pain, total facial numbness, and the feeling of dropping ice cream, mallomars and fudge out of the corner of my mouth....smiling, one of my favorite things, needs to be paced during a bad stage, or I live to regret it, with needle sharp pain up along my eyes and into my nose. I have a constantly running nose and frequently running eyes...
("Does your nose run and do your feet smell? Why, you're built upside down!")
It's SO attractive. Of course, I probably feel it more than it is visible, but on days like today I feel like my eyelid is drooping, my lip is spasming, and my cheek is protruding into space.
On the good side, I've lived with the pain for so long that it is no longer completely disabling. It's just a constant undercurrent, sometimes more turbulent, sometimes calmer. It's hard to believe it has been my constant companion since 2002. It snuck in, feeling like a gentle caress on my face, fingers stroking my cheek like an inattentive lover to the point of irritation. Then sharp pain along the line from ear to nose. Then tearing, and lip numbness, and hearing problems, and all along a sneaky chronic pain that I live with until an unwary smile knocks my socks off with a fiery line from ear to face.
Unlike my other varied MS symptoms, I don't ever enjoy this one. Some of the others are kindof amusing for a while, but I suspect that's because I never know what I get next. The ones that hang around lose their amusement value. So far I have this facial pain thing and now chronic spasticity in my flexor muscles in my legs. I'm getting bored with both of them. I'd ask for a new symptom, but I'm afraid my body would agree!
December 3, 2009
Or is it: Ich habe den Plan verloren (I've lost the plot)?
November 15, 2009
November 4, 2009
October 28, 2009
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.
October 25, 2009
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.
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....
October 22, 2009
October 20, 2009
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.
October 16, 2009
MS has livened up my life by adding some V-E-R-Y strong spasms of my thigh muscles, those ones that pull your legs up into a marching position. Sometimes, if I'm lucky, they'll both go at once. If standing, I'd be jumping. Fortunately for my downstairs neighbors, it seems to mostly occur when I am lying down.
I am beginning to suspect this is all an evil plot of my body to exercise one muscle at a time. After a solid week or more of hip spasms, I feel I could lift Paul Bunyan and his Ox single handed with my legs. Now, if only it would work on my abs I could be the glorious specimen of womanhood I've always wanted to be. Bruises from the shots and all!
September 30, 2009
September 24, 2009
Well, I love Harry Belafonte as much (or maybe even more) as the next guy, and this song never fails to get me moving, even today, when I feel as if I've spent the last three days in the machine pictured to the left....
Shake it all the time....Rock your body in time....
Yesterday I was hit with another total body dancemachine thing.
So I called the ever-unhelpful MS nurse. Who said she couldn't possibly do anythine for me over the phone, and that I needed to be seen. At a walk-in. Sure. Like anyone there would have any idea how to treat MS. Yep, and I believe in little green fairies, too.
But there was nothing for it. By this time I was becoming an advertisement for bar shakers, so I vibrated over to the walk-in, waited the requisite 2.5 hours in amongst people with supposed swine flu, various people with unspecified coughs, etc., and was finally seated in a small room where the paint was missing here and there and where there was an unattractive smear of mucus along the wall. The ever smiling and pleasant resident told me he knew nothing about MS and so could not help me. He went to get the doctor. The doctor, a 25 foot tall guy in jeans and a loose shirt, came in unwillingly and told me he knew nothing about MS. So I begged him to help me with a muscle relaxant or something as the vibrating was getting exhausting. I was spasming while I sat there, arms shooting out in two step spasms, legs twitching. When I walked to the pharmacy nearby, I could barely stand as the vibrations in my legs shook me about. Even the pharmacist looked at me longer than the docs. Who knows if this is really part of the MS? I might have something completely different but no one is interested in finding out.
Got my drugs, went home, took one, fell asleep. Woke, still vibrating, took another, slept through the night. Today, I am not as twitchy, but my body feels achingly sore, like it would after contracting for hours and days. I tried a walk to stretch things out but am still quite wobbly and weak on my pins and didn't dare go far, especially since my feet started making nasty pre-spasm cramping things as I did.
I'm so frustrated. I keep thinking I am going to feel better, I plan my life as if I will be able to cope with a normal life, and then I get whonked up the head with more problems. And my "helpers" on the medical side are so unhelpful. It's like they expect me to just suck it up and put up with it. Well, I know, I will have to. But they seem never to take what I tell them seriously.
What am I supposed to do???? How am I supposed to live????
And most importantly:
1. Will all this shaking lead me to develop the hourglass waistline I have always craved?
2. Will I be able to dance to Harry Belafonte again? Under my alert control?
Oh Harry, where are you now....?
September 21, 2009
v. twitched, twitch·ing, twitch·es
To draw, pull, or move suddenly and sharply; jerk: I twitched my fishing line.
1. To move jerkily or spasmodically. See Synonyms at jerk1.
So, to complete this gargantuan task, I had to take my separation agreement and my divorce agreement to a Service Canada site, have them certify it and copy it, and send it in.
The lass copied half of the documents and sent them in uncertified. They came back in six weeks, saying they were uncertified and couldn't be accepted. When I returned to the office, asking the same lass to certify them, she told me she couldn't because she didn't remember me. I'd packed the originals, so couldn't show them to her.
Recently I received another copy of the form I'd filled out, saying they had never received it. But they had, since they sent me back a photocopied form with the returned document.
So I've filled it out again, despite hand and body spasms, and now will find the other documents and try to convince them they should accept them now.
Why do I still feel they will come back to me?
It seems most unfair to inflict this on someone who has short term memory problems. It's too hard to keep track of everything. Or maybe they are testing my disability - if I snap and call in and yell at them that they already have this info, will that mean I am not disabled?
September 18, 2009
Still slogging through the Wii 30 day challenge although it kills me for the day after each exercise session - and I deleted squat jumps out of the plans for yesterday as my knees felt this was altogether too much to ask. Still, my running is getting better and I can smash the targets in boxing...
So today, as my body needs rest, I thought I would try exercising my brain - and ooh, is it rusty! I know I've been choosing simpler books to read and avoiding mental challenges but I didn't know my slumming had had such an effect. I signed into a site by Luminosity: http://www.lumosity.com/ and signed up for their 7 day free trial of the games.
They are great - much better and more challenging and also cuter than the ones on Brain Age 1 and 2. You do math, identify things through memory, create words, match shapes and colours. Most of the games are a bit like the Swope test - you have to do two things at once, and the results highlight how your brain reacts to these two demands.
For example, in one game, you must click on a spot where a bird appears while remembering the letter that appears at the same time. The letter is put into a hangman-type format and you can guess the bird's name or fill it all in with "snapshots" (each bird you click uses one shot). Sometimes, while looking for the bird, you forget to look for the letter. Or you just see an edge of it. You get higher points for clicking more accurately on the bird and for solving the puzzle earlier.
Or there's the penguin maze puzzle, which I found really hard. You are racing another penguin through a maze to catch a fish (it seems nice that the other penguin moves so slowly except when he beats you and you feel very stupid) - using the arrows on your computer to direct your little penguin. The trick? The maze rotates and you have to remember the orientation of the penguin with relation to the arrow on screen to use your arrow keys successfully. I got completely confused and couldn't make my mind figure it out, no matter how hard I tried. But the penguin is cute when it catches the fish and oh so sad when it loses it so I'll be back and try again.
Math is done with raindrops...each drop has a puzzle in it and you must solve it before it adds to the pond. Sundrops come along that evaporate all the raindrops. This one I'm sure I will get after more practice - it seems when I don't do math regularly, I really forget sums and etc.
After each puzzle you are given a rating, and if you fill out your profile, you can be compared to others your age. It was quite terrifying today for me - I was only in the 38th%tile or so overall. The program rates you on several parameters, so it's easy to see where you might need more practice.
After the 7 day free trial, signup is around $10 a month or less if you subscribe for a year or more. They add new puzzles all the time and the site is backed by research.
I'm hooked. I'll keep up for the next 7 days and if it continues to be as interesting, challenging, and fun as today was (I could feel my brain aching!), I'm going to sign up.
But for now, I am taking my aching body and mind for a rest.
September 11, 2009
Such a sad thing, for the person, the family, the friends, the world.
September 10, 2009
So I've started the 30 day challenge. Each day, more exercises. Different exercises.
The game gives you instant feedback, demonstrates the exercises effectively, and saves everything to adjust your next days' workout. I can't wait to see what it will have for me tomorrow!
Best thing? No weird looking coaches like the bluish ones in the Wii Fit program that gesture at you with gently swinging arms. I do still like Wii Fit's strength and yoga exercises, though.
Also, unlike Wii Fit, Sports Active doesn't make your body look exactly like yours does in reality - I come off as rounded but not spherical which is better than my tiny donut Mii from Wii Fit.
Much fun - highly recommended and I'll let you know how I get on, MS et al, with this tool. Apparently they are coming out with an expansion pack of new exercises soon, but I think this main program will keep me busy for some time. AND I can exercise scantily clad and gasp in the privacy of my own home...
September 4, 2009
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.
September 1, 2009
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....
August 30, 2009
But the future of increasing disability is pretty chilling. I’ve been for help but most people look at my exterior and think I am coping wonderfully or offer ersatz help, like “are you taking supplements?” or “play the recorder – it will make you feel better…” Well, I learned to play the Recorder at age 12. I’d like to think I could do something more significant with the rest of my life than blow on a wooden tube, no matter how pretty it sounds.
And I think that’s the general claim of my MS – no, wait, I need MORE! More life, more chance to give back in gratitude, more learning, more time to love and be loved, more walks in the woods, more skating on the canal, more exercise, more touch, more air, more rain, more sun, more….
Every day becomes a greedy grab for anything I can get, even if it’s a smile from a small child in a restaurant, , a breath of fall-freshened air, a cheerful “have a great day” from a cashier, a kiss, a taste of a perfect raspberry, or a slurp of a slighty melty chocolate bar. Like my two year old self, I think “I wantit!”
Sometimes it leads me astray; too much chocolate leading to that unsightly swelling about the tum, or relationships with unsavoury individuals who have won me through that kiss.
Sometimes it makes me decide too quickly, and pay for my errors later. I apologize more than ever before, unsure of whether I have offended through some unwary utterance.
Sometimes it leads me to bliss, like my glass blowing class that taught me the joy of creating from molten hot semisolids, or the meeting of someone wonderful through sheer luck and happenstance.
August 21, 2009
I've been feeling groundless of late, losing a sense of purpose, increasing in depression, and I know this is from the quiet of only looking after myself.
So today I took action. I've already signed up for classes and fun in my new town, but today I started with the giving back stuff and contacted the MS Society to see about volunteering. It was wonderful to feel welcomed, and enthusiastically, for my skill set and interests. It does my heart good to think that this brain I spent $1000's to develop might have a few bright helping sparks to give, after all.
Helping you helps me and all that. So true. I feel better already!
August 13, 2009
Today was a wasted day, and for some reason a wasted day seems MORE wasteful in the big city than it did in my little town. There's a whole world of fun things to do out there, and I didn't do a single one of them - just sat on my balcony, feeling the breeze, read "The Phantom Tollbooth" by Norman Juster (a fabulous book about words and language, filled with puns and more). I have a dozen writing contests to prepare entries for, and lots to do, plus the wonderful potential for exploring the city.
But the heat defeats me. It's 30+ degrees Celsius (90F) out, plus humidity. It's insane. Even the thought of it fatigues me, and I'm unwilling to get all sweaty and potentially induce brain swelling right now. I'm still dragging my body about recovering from the move, which all seems unreal to me.
One thing I should learn is that making decisions in times of brain fuzziness is not wise. I keep doing it, and live to regret it. But what seems like a good idea when I see myself in a hole and need to dig myself out of it is too tempting. I keep jumping to the Island of Conclusions, as Milo did in Tollbooth. And once you jump onto the island, it's hard to get off again. Let's just talk cell phone contracts, for one thing...
The cognitive changes in MS are one of the hardest things to cope with and understand. As a new friend told me last night, if you are irrational, would you be able to judge yourself as irrational? Do the mad know they are mad?
When life gets foggy like this, I know I need to go to ground and pull the covers over until I can see clearly again. It's hard to make others understand my sudden absence from things. But if I don't pull back, I know the mistakes I make will grow -and they may get past where I can easily correct them.
So, it's time for me to struggle off that island of conclusions and try and do things sensibly. Maybe a cooling drink would help....
August 10, 2009
Usually, I feel like a winner. Despite the MS, or even because of it, I feel I have succeeded in life so far, that I still have something to offer, that I am valuable as I am.
Today hasn't been good for that.
My new bathroom has mirrors hung at the level of my too large tummy, got that way through depression eating and not enough exercise. This morning's shower was a bit alarming. I am quite quite good at lying to myself, and I had told myself I couldn't possibly have gained enough weight to look like this. Hmm. Note to self: lights OFF for next bedroom encounter. All of them. And stop wandering about the apartment in the nude.
Then I (dressed) went to sit outside with my breakfast on my comfortingly noisy balcony (I can't get over how much I am enjoying traffic noise!), and, carrying my coffee and healthy cereal the ten feet to the balcony proved too much for me, as my ankle had different thoughts. It thought lying down would be best. Since I have no feeling or proprioceptive imagery in my feet, it took me a fraction longer than it should have to self-correct. I flew a bit. The coffee flew a bit more. My healthy cereal, laden down with helpful healthy fibre, stayed relatively put.
And, since I'm tired and living among far too many collapsed boxes and mess, this all spiraled into a shortish, brutish talk with myself about the levels of failure this MS has forced me into. Oh, how annoying.
I hate when I get this way, and so does my universe. Messages start popping up everywhere I go, from an article in the Walrus about Alice Munro, to a Facebook posting about John Hughes, about the importance of believing in your purpose and working towards it. Even my horoscope told me to stop being so hard on myself.
Well, far be it from me to doubt these messages from the ether. So I'm taking a day off from self-judgment and instead focusing on creating beauty (and softer corners) all around me.
Oh, and washing the carpet.
August 8, 2009
Moving day + 3 and I am upset my apartment still looks like some large department store (of the Kmart or cheaper variety) dumped all of its seconds into a bin...My den is somewhat tidier, books unloaded, computer and bird set up, music crooning to me from the speakers. I am surrounded by useless objects that had seemed important in my former house-owning life...
And I realize this apartment will be a challenge if my abilities lessen, which means perhaps another move in my future. On the other hand, I love the neighborhood, can't wait to explore more, can see the mountains, can feel a breeze, can hear people talking without caring about what is happening (unlike small town life). The sound of traffic is soothing, like waves on the ocean, after the periodic noise of summer in a tourist small town.
The move hasn't been easy on my MS symptoms, but I'm grateful things seem to be adjusting. I developed my first instance of esophageal spasms yesterday - ouch! I actually thought about whether it was, in fact, a heart attack. Called my MS associations to ask - they didn't know about it - but the web did.
For all of you who don't know, esophageal spasms are not uncommon in the general population, mainly due to reflux. It only requires a little gastric fluid to cause it. Not heart burn, this is more like a muscle spasm of the esophagus. Think of a charliehorse in your throat and midchest. It is astonishing.
I could still swallow, but didn't trust anything chewy, and am still hiding from these substances today.
Eventually it eased, after a couple of Robaxicet and some sleep. Not my favorite symptom, not atall.
August 1, 2009
And would falling the last few days before my move be smart?
Ah, the heck with it, I thought, and climbed on - and I COULD RIDE. I did not wobble. I wasn't filled with vertigo.
I could feel the freedom of the wind as I rode, even through my helmet - it was wonderful.
Tomorrow, I'm going again......
July 30, 2009
Well, aren't we all, really?
I'm plotting my evolution over the next while after I move to the big city, where opportunities abound for physical exercise, arts, pottery, jewelry making, mind expansion...while recognizing the way my body is seeking decay.
Can I sign up for cross-country skiing lessons now, in the summer, not knowing how I will be in January, if I will be able to walk, let alone ski in January?
Today, walking home, my right foot tripped me several times on the uneven pavement. One time I nearly tipped forward into a fall, even with my cane. How fast the decay? I don't know.
Can I sign up for hand building pottery, or will my hands be too weak to press the clay into shape? Will they spasm with pain after each session, or will it strengthen them? I don't have any idea.
Can I not sign up for these things and concede defeat? I don't think so. I hate being defeated.
I think, as always, I'll plunge forward, grabbing life with both hands, pulling on it hard and hoping I can hang on.
I'll sign up and activate myself, lest I perish in an explosion of boredom and self-pity.
But I'll know that I may not be able to hang on, for all that I want to. Sometimes, despite myself, the grip fails, and things drop to the floor.
It's not defeat, really. It's just winning the alternative. Right?