Saturday, July 07, 2007

Getting angsty about blogging, plus a new use for peas

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 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.


Wendryn said...

I'm glad you are going to keep blogging. (Jewish mother accent) When I don't read you for a few days, I worry... (end Jewish mother accent)

Take care & good luck with the idiot doctors.

kathz said...

Mary on the phone sounds like good news - may you find many more like her. Good luck with everything.

Heather said...

First: I suspect I'm going to hell cause you're making this misery funny and I'm laughing.

Second: a somewhat random offer. I think I have enough spare parts around here to put together a telephone headset. Hands free telephoning without the weird echoes that speaker phones cause. I've found the mute button particularly handy for those calls when curse words spring too quickly to the lips. If you think it'd make the rounds of phone calls easier, let me know in the comments and we can do the email thing to sort out details.

Artistic Soul said...

Ugh - this continues to be the drama of the year in my blog circle. I can't believe the doctors haven't seemed to make any progress in all this time. It makes me very nervous should I ever become ill.

Take it easy, and whenever you want to jump in and blog, we'll be here!

Elizabeth McClung said...

wendryn: thanks, I'll make sure to eat well too. As for idiot doctors, I am actual far too restrained because now I am slightly desperate for their help and so have to deal with the passive aggressive crap (I think it is unproffessional to tell a patient you are "thinking" of dropping them).

Kathz: Yes, Mary was very different from the intake nurse from Victoria Island Health Authority who laughed when she found out I couldn't feed myself some times and then told me to wait until august. Mary even started suggesting the names of better GP's and told me which specialist I had which were good and which weren't.

Heather: I keep saying this would be very funny...if it wasn't happening to me (Comment to my friend Alan, "It's flower's for german is completely gone!" Alan laughing: "I wish I had the slightest idea about your literary references"

Anyway, free stuff that makes my life easier - I am so there! Thanks. Well actually I am still in shock that someone can "put together a telephone headset" - I mean, I think the most complicated thing I put together was lasagne.

Artistic soul: Yeah it makes me nervous in case I become ill too.....wait a minute! Thanks for the support, I will try to amuse in one way or another - the words are good for frustration.

The Goldfish said...

Of course one has to say that it's your space and you must feel free to blog whatever you like and not worry about you readers, but as Heather says, it's also the case that you manage to be entertaining and good-humoured even when you are dealing with this shit. So be doubly reassured.

Your doctor is an arse. I would even take comfort in his incompetence - if his bedside manner is this appalling, maybe his medicine is too; maybe someone else would do a much better job for you? Only I have no idea how that's done.

Can I make what might be an entirely unnecessary or inappropriate suggestion? Take days off from your enigma. I mean, you have deal with your health constantly, but say two or three days a week you avoid having to deal with doctors, nurses and the various services, you don't even have conversations or look at internet resources about it unless a crisis arises. It's hard not to think about it on those designated days, but when it comes up, put those thoughts off for tomorrow.

Personally, I have always found periods like this (which have never in fact been like this of course, but times of blood-tests and scans and folks sticking their hands up your bum) deeply demoralising and really rather scary. I find life easier if I can put the issue in a locked drawer for periods of time and get on with whatever life I can get on with under the circumstances. This has no bearing on what you should blog about of course, just saying on the off-chance it is of any use.

Kay Olson said...

I love your posts. They usually encapsulate all the absurdity that is "a day in the life." Poverty, exhaustion, jackass doctors, assistance from the unlikeliest of sources, getting crapped on by public transit, random adventures, and of course, letters from the gub'mint.

Blog what you can, when you can. We'll be here.

Daniel, the Guy in the Desert said...

How is it that you seem to have found the pocket of least professionalism in the entire nation of Canada?
He's THINKING of dropping you because you're not getting good enough health care?!?
I think you need an attorney as part of your "health care" team.
And Mary sounds a jewel.

belledame222 said...

also with the Jewish mother here. but also also: peas? who knew? hell yeah, you're funny. and yeah, doctor's an ass.

cheryl said...

You may not be able to see the funny but you still show us the absurdity of what is going on in your life. Keep on posting whatever you feel like.

I hope you find a doctor with compassion and brains... I'm beginning to suspect there's only one in all of BC...

Cooper said...

I love reading your reminds me to stop whining about the petty little things that tend to annoy the crap out of me and get some humility and gratitude in my brain.

Would that I could do anything to help you...just ask.

Elizabeth McClung said...

Goldfish: I tried your suggestion and tried to leave it be for a day or so but then the calls kept coming (more appointments). It is a good suggestion and maybe I should actually take the phone off the hook?

I try to be light hearted at all times but often it just sails away: like tonight at the CAT scan it was the hospital imaging clinics I had been to a few times, so I asked, "Do I get air miles?" no. "After my 100th test do I get the test of my choice free? I want...." No.

Kay: The last line about the student loan just was about the post that day and how no matter how bad things get....the student loan people never give up. It is so sick, I find it very funny.

Daniel: yeah, my doc is quite a guy, one visit he just stared at my file for 10 minutes going "hmmmm" and I asked "What are you thinking?" he said, "I can't decide what way to go." then at the end of the 10 minutes told me to come back in 2 weeks - guess he still hadn't decided.

Belledame: yeah, though linda says that after I have half defrosted the peas on my neck a few times.....she doesn't want them back anymore, I can keep them.

Cheryl: Thanks - as for docs I will settle for efficiency or compassion or at least a ready desire to give me lots of pain meds or any combo of the above.

Cooper: have no fears, I grip about all that stuff too. In fact it is pretty easy to get obsessive about my mp3 player running out of charge or having my change fall into a drain - I just can't find anything funny about it. Thanks for the offer but until I run out of pixie sticks to snort I think I am okay!