Thursday, January 5, 2017

CIDP And Me - Happy New Year!

Well it's 2017,  I hope everyone enjoyed the holidays and wish you all a healthy and happy new year. Today marks one year since I wrote my first blog post on here (though I didn't publish it right away). It is hard to believe that a year has gone by. 2016 was certainly not what I imagined it would be. The outside world lost it's mind and went crazy while my little personal world started to regain shape and order out of the chaos left in the wake of 2015.

I was going to write a reflection on the year that was, but I decided against it. Much of it is already here in my other posts. I don't want to go back to the uncertainty and frustrations of the first half of the year, nor do I really want to go into the ever increasing minor and major improvements of the latter half. Suffice it to say I am happy to close the chapter that is 2016 and begin a new one for 2017.

I have some updates from the past few weeks that I have neglected to share. It's nothing personal. I just got caught up in the holidays and, if I'm totally honest, became too obsessed with jigsaw puzzles to spend any time on the computer. My life is so exciting:)

Anyway, I made more progress in physio recently. I can now walk without the walker! Instead of the walker I hold onto the hand of my physiotherapist and the hand of one of the physio assistants. I used the hands more for balance than anything else and was able to complete a 200ft loop. Pretty exciting really. I was also able to do a few squats like that (though I needed the hands for a little more than balance). It's all in an attempt to force me to use my leg muscles more. I'm now halfway through a 2 week break from physio and staying active with my home program. Hope I can still work all these miracles when I return Monday.

Monday also marks the start of a new addition to my treatment regime - Occupational Therapy. I know I've mentioned it before, but my hands are pretty pathetically weak. They have improved a lot over the past 4 months or so, but there is a long way to go. I didn't really mind (especially once I regained the ability to drink 1-handed) so did not push for extra therapy in this area. This changed a little over a month ago with my new physiotherapist. She assessed my hand strength and was shocked that I get by as well as I do. She submitted an OT referral and I received the call today. It will be another regular appointment to contend with, but it can be scheduled to always follow physio and so will not mean an extra trip. Plus, maybe I can convince her that I once had beautiful penmanship and then perhaps she could miraculously teach me to write nicely:)  Updates as events warrant.

We now move to my life outside physio - in a wheelchair. I never imagined I would need the chair for so long. I also never imagined that I would start to feel normal in it. I have been forcing myself to go out as often as possible over the past six months and somewhere along the line I got over my extreme self-consciousness. I'm not sure when this happened but it struck me the other day that it no longer bothers me. I mean, it still bothers me when places are not accessible and I get frustrated with the limitations, but I no longer feel like the elephant in the room.

I met new people through a friend last week and my situation never came up - we just chatted about random things. I know they noticed the chair and were probably curious, but it did not come up and I felt no awkwardness. It was refreshing. I sometimes worry that I am becoming a one-topic person who can only talk about my health. I am careful not to dwell on it too much, but it is an unavoidable part of the conversation whenever I run into people I know. It was nice to know that I can still make small talk and carry on conversations with new people outside of the healthcare system.

With all of this, I am certainly not allowing myself to become complacent or resolved to life in a chair. The sooner I can walk and drive around, the better! That said, I am not rushing anything or putting any timelines out there. If nothing else, 2016 has taught me patience. If progress has to be slow and steady, so be it. If there are set-backs and bumps, I'll deal with it. I have accepted that there will be no 'eureka' moment when things just snap back together. I will not just suddenly be able to get up and walk around. I will get there in time. One nerve re-connection and muscle rebuild at a time. Meanwhile I will perfect my wheelies and chair-shovelling (I hear a nor-easter is brewing for the weekend).

Cheers and Happy New Year!


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