Today I’m a little pissed off because the O/T from Home Care showed up completely unannounced with another power wheelchair, but because he didn’t bother to call me in advance, I had to send them away because I was working on a deadline. He insisted that he had called me and made an appointment, which is not true. Even after I closed the door I could hear him telling the W/C rep that he knows he called me and I must have forgotten because, you know, MS can affect cognitive behaviour. I felt like going out there and pulling him back inside to show him my call display history and the fact his number wasn’t there in the past two weeks since I last deleted history. That the only call from the C@lgary Health Region was yesterday, when they called to speak to my home care worker. That shit pisses me off. My mind hasn’t been affected by my MS thank GOD, or I wouldn’t be doing the work I do, and I don’t appreciate it when people blame someone else, especially when that someone is me, rather than take responsibility for their own mistakes. Jerk. At any rate, we rescheduled for next week.
I just realized this is my 500th entry! Which is cool, but also pathetic when you look at how long I’ve had this blog. I started a journal at Diary-X in 2001, and it still irks me that the thousands of online diaries hosted there were lost when their server crashed because they never backed up. I lost years of my life there! I never thought it could be lost… I didn’t understand how servers and all that worked. I still don’t. But back then, like most people, I trusted that once I hit “publish”, what I wrote was forever out there in internet land. One of these days I really need to print off my entries here and file them for safe-keeping (even though I know Russ backs up). But I need to buy paper first, now that I know I’ll need more than 500 sheets!
The above was written when I started an entry almost two weeks ago. I don’t know what to say, besides the fact that I, as Robyn said last week, have been feeling uninspired. The difference being, of course, Robyn takes off a few days whereas I disappear for a MONTH. I still don’t feel like talking much, so this may be short! (Well, not a month’s worth of entries, anyway).
Last week my O/T came by again with another power wheelchair, and this one worked great! So now that I’ve got the chair picked out, the application is going in. They only look at a certain number of applications each month, so if they haven’t met their quota for May I should find out within a month if I get it. Fingers crossed!
My mom and Bob were here yesterday, and they bought me a new office chair for my birthday. Bob put it together, and I sat in it long enough to think it should work for me! I’ll see how I feel after working in it today. If I’m able to sit at my desk for longer than 15 minutes at a time without my butt, back and legs aching up, I may not have to give up all my clients next year!
As for my Beat Insomnia Plan, it’s working a little bit, but not as well as I’d hoped. I realize now that is because I spend 99% of my time indoors, on my butt. You remember when you were a kid, and you walked to and from school, and got sunshine, fresh air, and activity every day? And when you went to bed at night, you SLEPT? We are not meant to sit around inside all day. I’m using my Litebook every morning for my *sunshine*, which is helping, but I’m not able to do all I need to really beat insomnia. I asked my home care worker what her other MS client does (he is paralyzed from the neck down and confined to his chair all day) to sleep, and she said “he doesn’t, he has a hell of a time getting any sleep.” So that’s it, right there. People who work on farms all day or in landscaping and gardening must sleep amazingly well. And those able to go for a walk during their lunch hour shouldn’t do too bad. So I don’t know what people in my situation or worse are supposed to do. Insomnia is going to take over the world, with the amount of children and adults who get to school or work barely setting a foot outside, work inside all day, then come home and flop in front of the TV and computer for the night. Get outside, people! Get some exercise! So that is just one more thing that has gotten a lot worse for me over the years as my mobilty has worsened.
I’ve been quite the downer these days, when I think about my life, which is EVERY DAY. I know of MSer’s worse off than me physically, but it doesn’t make me feel grateful for the abilities I have left, because they all have MONEY and SUPPORTIVE PARTNERS and travel and go out and about regularly, so I just end up feeling more sorry for myself. As I sit here on my ass and watch the world go by via TV, computers and iPod touch because I can’t get myself out there to be a part of it. I missed Serena Ryder because of my health. Melissa McClelland and Luke Doucet were here last week and I missed it because I can’t get myself to shows. The Polyjesters also played last week and even if I COULD get myself there, the venue was way upstairs with no elevator so I wouldn’t have been able to go. I could go on and on, and that’s just my love of live music. I’m having a hard time finding things to be grateful for everyday and I’ve been avoiding blogging because I hate complaining and it’s all I want to do these days!
I guess I should update y’all on the various things I’ve been trying and how they’re working for me:
Did I miss anything? I still love my Chi Machine, one of the best things I’ve ever bought ever, I can’t say enough about it. It seriously makes my days bearable. I also still take 50 mg of 5-HTP three times/day and do believe it helps keep me sane, as well. I don’t consider either of those a waste of money! Oh, and I’ve still got a ways to go before I get really proficient on this Frogpad. I would be better on it if I updated here, more! It’s a great little keyboard for us one-handed people.
I finally heard from the physio place I was referred to last month and will be heading there on Wednesday. I sure hope I get long-term physio out of them and even get strong enough and the help I need to go back to the Living Well with a Chronic Condition exercise classes. That would be awesome!
I have no photos. My brother borrowed my camera “for a few days” when his girlfriend arrived from Mexico on March 21 and I have yet to get it back. Also, her return flight was booked for April 19 and she is still here, so it’s safe to say things are going REALLY well. So here is an older photo taken with my MacBook during one of my Pita-is-all-over-me sessions.