Today is Rare Disease Day, an international day to raise awareness. It happens every year on the last day of February. So on leap years, it seems especially appropriate to have Rare Disease Day on February 29th! Did you know that 1 in every 12 Canadians has a rare disorder? Neither did I until I stared researched after being diagnosed with Complex Regional Pain Syndrome (CRPS)…Read More »
‘Tis the season here in Calgary, there is a snowfall warning in effect to the tune of 12 cm! So it will be a white Christmas here…unless a giant chinook happens. In Alberta, we get something called chinook winds, which are huge systems that bring warmer weather quickly via wind and pressure changes. According to Wiki, the largest temperature change ever recorded in 24 hours due to a chinook was in Loma, Montana, where it went from -48°C to +9°C. Fifty seven degrees, can you imagine?! Or when variations of 50°C were observed in Black Hills in 1943…in MINUTES. Seriously. (Links at the bottom.) Read More »
I had the immense privilege of a 2 night trip into the Kananaskis with my father (Big Al), and the dogs recently. We stayed at the William Watson Lodge, an accessible way to experience Peter Lougheed Provincial Park. There are cabins, campsites, a hut, a trailer, over 20 kilometers of paved walking paths, and picnic sites. They are all accessible! I was able to go for one big wheel down a ramp to a lookout, and back up again. That was my main adventure but I will be back to the Lodge again for more…Read More »
Today marks 2 years of being stuck in a bed. I no longer describe myself as “bed-bound”, but physically I’m still in that realm. I am able to get up more, and I have made progress but Complex Regional Pain Syndrome still runs my life by placing major limitations on what I can do. These annual dates of things like my initial diagnosis, school drop-out, etc. get weirder and weirder every year. There is something really neat going on today that is a cause for celebration, though!
I haven’t been writing very much in the last ~6 months. I’ve really been trying to focus on becoming more functional, and I’ve sort of neglected some of the other stuff. Writing helps me to process things, and to mark different events. It’s always hard to balance all the aspects of our lives. I think everyone feels out of balance at some point, sometimes even daily! (Exams, am I right students?!)
As you may have heard me mention before, chronic pain and depression often go hand-in-hand. When your life has changed so significantly because of daily pain, depression can easily follow. When I don’t have enough positive things to share, I get upset with myself. I start to question if I am doing all I can be doing. I question whether or not I could have handled one more exercise yesterday, whether I’m whimpering the day after or not. I question whether I am being honest with myself about my future, or if I’m delusional in some way for believing I will have a life back again. Some of these thoughts are totally illogical or untrue, and are therefore poisonous to my recovery and well-being. It doesn’t stop the thoughts from happening, though.
Like anyone else who goes through mind state challenges, it’s a daily thing to push all these thoughts away. I’m sure many of you know how much energy that can take. I am determined to push for progress, and the mental aspect of it is huge.
So what does progress look like? I’m not on opioids, so that is positive. The new medication, low dose naltrexone (LDN) seems to be helping. I can handle more activity, spend longer standing, and spend longer sitting. Yes, I am training myself to sit and stand again. I can sit in a normal chair for a maximum of about an hour. Then I pay for it with a flare up. I can stand for about 15-20 minutes. This is a big accomplishment for me, because there was a time when I could barely stand for 2 minutes. I couldn’t sit without knowing I would be flared up after. I can also handle more stimulus than I used to, including vibrations, and sounds. I am really enjoying music again, which is lovely. That’s what progress looks like for me.
I am doing my best to keep the pace moving forward. I want to stay on this path of improvement for as long as I can. Keep on keeping on, or something like that.