My right hand/wrist/lower arm is no longer weight bearing or, well functional. This means I can’t use my wheelchair. That sucks! I wish I had a really glorious story that went with how I got this accident like being hit by an out of control truck. Truth is....I was hit by an out of control vespa scooter. No. That’s a lie, it wasn’t even that cool.
On Sunday, Linda had to run an errand, so I snuck up the Y – where I now have a membership because I legally declared myself as “a pet” (I am not joking, that’s what I told the front desk and then showed them my Canadian Tax return from last year which proved it). And if you have absolutely no income whatsoever and can prove that you live on air, then the YWCA/YMCA will let you be a member for….$10 a month. I didn’t quite follow the logic of it but maybe you can. Anyway, it means I can do drop in sports for FREE and Sunday had badminton. I had never played badminton but I had played tennis and I thought the concept was pretty much the same (Rule 1 and 2: Hit an object with a racket; do not hit the person on your team with the racket). The person at the front desk and the organizer thought that “it just wouldn’t work” with me in a wheelchair. But we started playing and it turned out that I was quite good with it (repeatedly asked, "Are you sure this is your first time?" and "Come on other days, you will be better than some players."). Except the people I was playing with were: 1) The YMCA badminton director, 2) Some European guy in his 40’s who played badminton “at least” four days a week and 3) some guy in his 20’s who spend his time NOT playing badminton watching “classic badminton matches,” Today he waxing on about this great 1985 match he had watched over the weekend (it was like listening to a Trekkie who had gone sporty).
The fact is that after the first 30 minutes of warm up I asked my team mate (YMCA guy) why the other team wasn’t “running around” and how do we make them do that. So they told me how to hold my racket and where to hit it and I did. And I would roll the net and try some slams. So, it was pretty obvious that while I wasn’t going to win, I wanted to win. Which is when they started dropping the birdy (sorry, if I start talking about SHUTTLECOCK this and SHUTTLECOCK that, I will end up on even weirder online sites) short and over my head. I was getting tired and sometimes instead of rolling back I would try and stretch and do a hard twisting hit to the back corner. It was during one of these that I sprained my wrist.
That wasn’t the problem. The problem is that here was super badminton euro guy on the other side of the net and yes, it was my first time playing but, he was GOING DOWN! (No, I don’t have an “A” type personality, why do you ask?”) so I might have, um, after rotating my wrist to feel where it hurts used a trick I picked up from olympic gymnasts: they jump up and down before routines to deaden the nerves in the ankles that are causing them pain. So I might have repeatedly slammed the injured part of my wrist against a hard object until “Hey, it doesn’t hurt anymore!” (The sad thing is that I thought this actually meant it was BETTER) And then I continued to play for another hour. So, yeah, when afternoon came and I had to take pain pills, wrap and then immobilize my wrist I realized that impressing euro guy might have had a higher cost than anticipated (I lost my singles match 15-6 but they said they weren't taking it easy on me).
Sigh. So still wrapped, no weight bearing, no using, no movement. I was still planning on going to boxing tonight but was unable to due to OTHER problems. Two problems: 1) I slept over 12 hours today including a four hour afternoon nap from 4:30 to 8:30 p.m. – past the time of boxing (late nap because I had to wait for Red Cross guys to repair my bed so I could sleep in it) and 2) Lost the will to live. See at 10:00 a.m. I had ONE appointment this week but by 1:00 p.m. today I had at least one appointment every day this week, and hordes more paperwork that I NEED to do. All much like the paperwork and meetings I have been going to in order to try and improve my life for the last 11 weeks which has yet to produce a single positive result. And I have been getting through the last while on pep and will power. Without the desire to force myself into whatever it is I must do next, I just lie there. Because it hurts whether you make some administrator their hourly wage as you fill out another hour of paperwork (as I am to do tomorrow at 11:00), or just stare into space. I not only have no control over my life, but for all the action I am forced to take, so far, after MONTHS, none of it has produced a single positive effect.
What I want to do is email all of you who have said you would stand in as family, only, to get up, to answer the comments on the blog and eat took from 8:30 until 11:00 pm. So that will have to wait a day or two, I’m sorry. I already have at least two appointment tomorrow in the time between getting up and dressed and my nap at 3:00.
My GP office yelled at me today because I told them I had a heart infarction Friday morn last week. They wanted me to go to the hospital. “Okay next time.” I said. “No, now!” they said. I was just telling them so we could book an echocardiogram and find out if there was permanent damage. I am pretty sure about the heart thing as my heart rate was 192 bpm with over 25% erratics, then 1 hour acute chest pain (that was coming through 2 tramadol – the maximum dose AND codine). That was followed by several minutes in which 40 seconds felt 10 times worse pain than I have ever felt (it felt like a star was exploding inside my chest), and what I could see of my left arm was a dark purple with the left hand actually withered. It looked like advanced gangrene. I had to be held as I lost all trunk and limb control and couldn’t breathe (which with the screaming I wanted to do was probably a good thing). Then my worker put me to bed and watched because it felt like a huge anvil was on my chest with pain radiating down both arms. I had asked her not to call 911.
My GP office wanted I should go in NOW, on Monday to the hospital find out what caused it. I know what caused it: my physical exertion to force a drop in the diastolic was too much for my MSA/AAN to control and I paid the price: heart infarction today or stroke in a week – that was the choice. What could a hospital see today or do then? There might be drugs which could intervene and lower my BP, but no specialist is interested in moving me up the list. There might be ways a pacemaker could take over heart function but I haven’t seen my “heart specialist” in seven months and he isn’t talking to my GP.
I know a heart attack could kill me; I know a seizure or lack of oxygen could cause permanent damage, a series of micro strokes could occur due to high diastolic; permanent organ damage due to high systolic. I know. I don’t run to them because it makes me tired and because they simply don’t know what to do. Will it kill me today is all I ask. And even if it does, how much will that matter, after your fourth or fifth hour of pain which has you hallucinating.
“Fight on!” is what people say now, right? Hell, I’m in this because I am such a damn good fighter that my own immune system seems not to know when to stop fighting, even when the only thing left to attack is ME.
Did I think I would start having heart infarctions so early? No. But is the number two death for people with MSA/AAN. What should I do? Go on for another month or two, filling out the paperwork while I still can, or sneaking away to do stupid things that at least I have a choice over and try to impress euro badminton players? The changes and the pain, are very fast this week, extreme in nausea, extreme in fatigue, muscle weakness and pain. These days the questions I ask are, do I take a dangerous level of Tramadol and risk liver damage to sleep for one night or find out what happens if I don’t? Will it kill me today? That’s all that matters now. That and getting strong enough to sneak away again. I don’t want a mockery of living, going through the motions as much as I can, I want those hours when I genuinely forget that I am different and two hours when I don’t think about death; or living a year ventilated in a home, or bed sores and open pus sores with nerve endings on a body which still has nerve feeling.
Well, how many here have seen their left arm/hand turn a disturbing purple and shrivel? I have, I have! It was very biblical. You can’t say I’m not getting some unique experiences.
Happier emails tomorrow I hope.
19 hours ago