Note: I wrote this up a couple weeks ago, and was going to post it at the end of last week, but then some things happened and I got side tracked, and well - I'm going to post it after the fact and backdate it because why not.

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...the more they feel like Groundhog Day. I thought I should do an update, as apparently some people do still read my blog for my health updates??? Keeping a personal blog in this day and age is a minefield, and half the time I think I should just take it offline, but I guess that day is not today.

Last week I had an MRI - it wasn't my first, but it was my first really long one. A few things caught me by surprise, so I wanted to share what they were, as well as a few tips for making long MRIs more comfortable. 

Here in Vancouver, they've started running the MRI machines 24/7 to get wait lists down (aside: did you know Canada has one of the lowest per capita numbers of MRI machines among OECD countries?), so when I got called for my appointment, the first one I was offered was in the 2-4am slot. Yikes - the last thing my sick body needs is being up all night. I opted to compromise and wait an extra two weeks to get a slightly less arduous time slot, resulting in my approximately 80 minute scan being scheduled for 11:15pm-12:35am, with an arrival time of 10:45pm. Because I've developed a pretty hefty case of dysautonomia, which kicks in like a ton of bricks around 10pm every night, I anticipated struggling a bit while I had to be vertical between leaving our home and laying down on the MRI bed.

Here's a truthbomb for you: I'm not going to get better.

Before you jump in with a barrage of platitudes, please just check your healthy privilege. This isn't about the "what-ifs" and the "maybe somedays". This is about reality, this is about my reality. And if I sound angry, it's because I am angry, and I bloody should be.

This is about looking at what has happened so far, and predicting what will happen in the coming years based on reality. Every month I've gotten sicker. Since five years ago, when I was still able (albeit, with difficulty) to work 30 hours a week, keep myself fed, and keep my home respectably in order all on my own, things have gone so far downhill I can't even see where I started anymore. I can't do any of that now. I can't work. I can't take care of myself or my home without help. I'm no longer financially independent. I can't go most places on my own, and I can't go anywhere without a mobility aid. I can't travel (the two small attempts have been miserable failures). And I've lost a significant chunk of my prime career building, not to mention childbearing years, to chronic illness that has continued to go un(der)-diagnosed. Yes, I cope. I try and make the most of things. But the reality is crushing.

I'm sitting at home, while Bruno is out at a concert, trying to use voice dictation to write this post. I've been meaning to write this for a while, to update on what I posted a couple, or make that four months ago, but I've been having a bad arthritis flare, so I have been putting it off since typing feels like hot daggers in my finger joints. Voice dictation is a last resort - it doesn't work great, and since I still also have problems with my voice, it's just wearing out a different body part. Communicating is hard! I momentarily thought about doing a video blog, but I have one friend who is deaf and occasionally reads my posts, and I know I wouldn't be able to transcribe the video myself, so it just doesn't feel like a good option. We'll see how this goes, thanks in advance for extra typo/punctuation forgiveness!

I was glad to have this past week off from medical stuff, as I've been having a marathon of doctors appointments these last few weeks. This week is another doozy (including an early morning MRI with IV contrast - fun, fun), but I'm hoping things will calm down after that. After all of this slogging, I'm finally coming to the point where I've exhausted most of the options and routes towards figuring out why I've gotten so sick. But even though I was told over and over again that there was nothing to find, and that I was just stressed and not coping well with having IBS and chronic fatigue syndrome, my persistence has paid off. My diagnoses may not be the most concrete or common, but I finally do have some real answers.