My week? This is my week. I go down to my local alternative video store to rent the Korean film Lady Vengeance (which should tell you where my mind was focused) when Rob, co-owner takes my $5 and gives me...no change. “Where is my change?”
“It’s the weekend.” He tells me (on the weekend recent foreign releases are $5, weekend at video stores start on Friday).
“It is not Friday.” I state with certainty.
“Uh, yes, it is.” Rob replies.
“No, I am pretty sure it isn’t Friday.”
The rest of staff assure me it is leaving me to return Lady Vengeance (hey I’m unemployed, so $2 rental or nothing) and feel very unsatisfied and somewhat disoriented. It’s not a confidence boost. The last few weeks I am trying to do whatever it is that is on the calendar for that day; a doctor’s appointment, a medical test, a scheduled activity (for some reason all the disability recreation organizations in this city only have activities from June to August). Between doing these things and recovering from doing these things, I have tended to lose track of stuff (time, space, logic, where I left my keys, etc). Many of the days I don’t have time to blog, some of the days I don’t have the energy.
Like Thursday (I am pretty sure it was Thursday) was a hot day. My “heat intolerance” now has a name, Uhthloff’s symptom, a condition where a small change in body temperature upward causes a worsening of symptoms. If the body returns to a cooler temperature, the symptoms will likely disappear (over minutes or hours). On Thursday, I set a new record as I went through two bottles of oxygen. My GP’s receptionist put me in an unventilated south facing room. When my GP arrived, I couldn’t breath. He opened the oxygen and tried to take my blood pressure, which failed twice (machines don’t like me when my heart is all a flutter). Remember what I said about people seeing the face eating alien inside. Well doctor’s don’t like it either, as he told me “There is a whole new layer of complexity in your symptoms, I am not comfortable with this” and ended telling me to come back in two weeks. He will make a decision between now and then if he will drop me as his patient (because “I cannot tell if you are getting comprehensive care and if you are not I don’t want to be on this case.” ????? When I asked if he dropped me as a patient, what would happen to me, he just smiled and said, “That’s a good question isn’t it?” – I see the doc has a psycho side!). I used up the rest of that oxygen tank when I waited for my Victoria Transit Bus which stopped to take on all the foot passengers at my stop before the driver told me he was “too full” to take me (though no strollers, walkers or wheelchairs were on board). Shutting the door on a person in a wheelchair with an oxygen breather on their face rather than spend 1 minute getting people to move back; that is the Olympic caliber callousness of a professional transit driver with all the caring beyond “when is my next break” squeezed out.
Anyway, I was pretty fucked up by the time I made it back to my apartment and air conditioning.
Back home I talked to the MS clinic at the hospital. This is because at the end of a day I lose fine motor skills. Sometimes, when I turn my hand to bring my fork to my mouth, it drops out of my hand. I sometimes miss my mouth. I drop things. When I get tired or it gets hot then the problem gets worse. Good thing July doesn’t have a lot of hot days.
The woman on the phone (let us call her Mary after one of the saints) asked me to explain the problems. Then she said, “I can hear you have difficulty speaking, there is a trick MS people use, which is to get a bag of frozen peas and put them on the back of your neck. Do you have a bag of peas?” I did and she waited while I applied them. This was, in over six months of doctors, specialist, hospital visits, medical assessments and testing the FIRST time anyone health associated had given me an actual useful suggestion – something I could DO to make things better. And yes, the peas helped me start to speak better. Soon Mary wanted to take on my doctor and the whole system to get me assessed and some home care. Wild. She must be a temp.
After I talked to her, the Red Cross people came by to deliver a sliding board and transfer belt. I need this because I am sometimes too weak to transfer using my own power. One time I got hurt as someone attempted to transfer me to the wheelchair pulling up on my arms. It turns out as the muscle control weakens that this is an excellent way to dislocate a shoulder. I told the Red Cross guys, “When someone panics, usually I’m the one who gets hurt.” One of them liked the phrase so much I think he is making a coffee mug with it on there.
Then the hospital called to tell me that I now had an appointment for a CAT scan on my head Monday night (all right, we’re going tumor hunting!). That was when I was supposed to do my boxing class. Suck! But now I was too tired to do anything but sleep.
I awoke after 6 pm and remembered that Boxing was on Thursday night too and if I had to miss it on Monday, I was going to take it today. This was more of an “I wanna do what I wanna do!” decision than anything else. My instructor Ian told me I was “crazy” to be there, as he would be resting somewhere if he was in my condition. That would have been more convincing if he didn’t have a purple bruise as large as his head covering his right hip (and teaching the class). So after the stretching and push-ups I rotated through the speed bag, the heavy weight, the boxing against the pads and other portions. Wow, was I was weak. I mean, in just two weeks I was much weaker. And with the heat in the gym, I needed to take some breaks and eventually continue with oxygen. P., the girl I was doing padded glove training with said she was cool with it as she had a roommate with similar problems. In fact the more we talked the more she said, “It sounds like you have what she had.” Was she still alive? I wanted to know. P grimanced, “Well sort of alive....on a lot of morphine.” And her diagnosis? She never got one.
At the end of the class we did the “Warm down” stretches and I was so tired that after sliding down from my chair to the mats, I didn’t have enough arm strength to move my legs, so I left them where they fell. Afterward the assistant coach said that I looked like I was putting more effort into the warm down than most people did the whole class (Linda said my facial expression was, “This is killing me but there is no way I am going to give up.”). I thought coaches and assistant coaches were supposed to INSPIRE you, not depress you.
Linda had to wheel me home as I was now officially somewhere between a muppet and a gumby doll. I could not keep my balance even to sit up, so my body jerked back and forth trying to stay upright. I tried five times to hit the elevator button but not getting close. My arms were twitching and I had to treat them like a gun with a bent barrel, just aim left of where you want the right arm to go and maybe you’ll get close. Later that night, I didn’t much sleep because even with a pain pill and a muscle relaxant I couldn’t sleep or drifted in and out of delirium, talking to Linda and the other three people in our bed (who it turned out the next morning weren’t really there!). So that’s my “average” day: Thursday.
See most days are just about doing stuff, getting by, recovering from stuff and watching the Weather Forecast (that whole getting hot getting worse thing). I get fatigued a lot; I get confused, it is hard to focus. With all that, can I have the luxury of the time and distance of doing light and amusing blogs? Because I know no ones wants to tune into the physical degeneration blog (and if there some sort of sexual fetish about it, leave me in ignorance). My problem is that not much is impersonal right now. While I care about private prison abuses, politics, and human rights I REALLY care about how I am going to get to the bathroom. I could be spending time on the computer finding funny videos but I instead try to watch things so I can stop thinking about “Do I have ALS/MND?” “Are there any other neuro conditions that I could have?” “What do I do when I can’t dress myself?” “Am I going to end up staring at my custom built manual wheelchair from a hospital bed set up in my room?”
But blogging about really personal stuff? When you need someone at times in order to eat or bathe, and you need someone to get places or back, and when you can’t control if you fall over or not and everyone you see regularly knows how to turn on your oxygen INCLUDING the people at the video rental store then what separation is there between your personal and your private life? I don’t know but I will keep blogging, I just may scatter around on days when I can’t see the funny.
Got a letter. It’s the government. They still want me to pay on my student loan.
4 hours ago