CIDP and Me - Let's Roll

I haven't posted an update in awhile and have a lot to report, so this may be a long post. Or not, we'll see how the muse works in me tonight...

When I last wrote I was on a much deserved 'holiday' from physiotherapy. Well, rest assured we were quick to get back to work kicking my butt and expanding my comfort zone. There was no easing back into things with nice little strolls with the walker. Nope, we picked up right where we left off - walking around with only hands to hold onto. This lasted a session or two. Then, lest I become complacent, we tried walking with only one hand to hold. This actually worked out fairly well and I was feeling pretty good about things. Imagine my surprise when I learned that this feat was not enough! A week or so later I found myself lurching around with my hands out front like the monster from Frankenstein or a zombie while two people held my safety belt. That's right, I walked (for 100 feet or so) with nothing to hold onto. We have repeated this a few times and I can now breathe more normally and relax my hands a bit. I would certainly topple without the people hanging on for dear life, but that will improve. I'm pretty happy about this. I still have a long way to go in terms of balance and holding myself up, but it's coming. Our other less scary activities work on this.

The other major new thing at physio is the rollator. A rollator is a four-wheeled walker with hand brakes and a seat that can be used if one gets tired. You see a lot of older people tooling around with these. They make more sense than a traditional walker for outdoor use but are a little trickier. Anyway, the current thinking is that I am not too far off (whatever that means) from being able to use one of these babies when I go to the mall (cause I do that?...) or the hospital, etc. Using a rollator is weird. At first I felt like it was constantly trying to get away from me, so I held on for dear life and put a lot more weight through my shoulders than I probably needed to. This is getting better and it is becoming a little more comfortable. Updates as events warrant.

In my last post I mentioned that I was to start seeing an occupational therapist for my hands. This is also going well, though it doesn't look like my career in calligraphy will ever get off the ground. We spend our time standing at a table and doing 'functional' things like putting pegs in and out of a peg board and stacking cups. I also have a bunch of stretches and exercises to work on at home. I see her once a week or so.

That was a lot of text so here is a picture that I will explain in a paragraph or 2.

Being the keener that I am, I have been doing lots of extra-curricular activities this month. The first is yoga. I finally got my act together and started going to a yoga class. It's a restorative class and is almost more of a meditation class than yoga. All of the poses are on the mat and supported with blocks and bolsters. These are held for several minutes for a glorious easy stretch and opportunity to breathe and let go. I only needed to modify one pose as I cannot sit back on my heels. It was great.

The picture above was taken this afternoon during my newest activity - a walking track. There is a 200 meter proper walking track at a hockey arena near the hospital. It's free and accessible so my friend and I decided to give it a go. We lugged my walker and her two kids (it was a rain/snow day) through the deluge into the arena and up to the track. I do not think I have walked 200m in one session but was feeling pretty confident. I strapped on my safety belt and assigned the kids to follow me with the chair while my friend would walk beside me. It became quickly apparent that having the kids follow was not a good plan. We sent them a little ahead and had them wait at the corner. And so it went. I made it around on my own steam with 3 breaks. The kids found the breaks boring so decided to spend them running around the track. Thus we managed to tire me and the kids in one go:) I had a nice long nap this afternoon and hope I can move enough for physio tomorrow (haven't seized up yet but will definitely stretch tonight).

I'll leave you with this lovely shot of my back - note the children making off with my wheelchair in the background. And yes, I have tennis balls on my walker - I have fuzzy dice too but left those at home.

Ciao for now!

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!