CIDP and Me - What Doesn't Kill You...

You know the old saying, "what doesn't kill you makes you stronger"? Well, that pretty much sums up the past 6 weeks for me. I'll start with a happy picture of me petting Barney while standing unassisted (you may have seen it on Facebook, but here it is anyway), then I'll get into the nitty gritty.

Here's what happened: On January 8 I almost died but didn't. How's that for drama?

My portocath (the central line I had to allow for easy IVIG without using IVs) got infected and I became septic. Luckily this happened in the hospital while I was starting IVIG. My nurses caught on right away and moved into action (as if they haven't done enough for me already! Love your nurses people, they are awesome). I'm not going to go into all the details here (just a little too soon and too personal) but all in all I spent just under 2 weeks in hospital and another 2 weeks recovering at home before the fog cleared and I started feeling like myself again. Just in time for IVIG. I did manage to lose a little weight, which is nice. Once again Scott proved to be my rock and lifeline. I don't know how I'd get by without him. I'm certainly not an easy person to be married to at times! I probably gave him a few more grey hairs last month.

On to the 'makes you stronger'/silver lining portion of the post... I'm not sure why but ever since the antibiotics cleared my system and the fatigue wore off I have been unstoppable (roar!). To start, I had my first reaction-free week of IVIG since June. What a nice change that was! I have no idea if it will continue, but I sure hope it does. I was wiped out the whole week as usual, but even that seemed to take a little less time to get over.

Two days after IVIG I noticed that I felt surprisingly stable on my feet. I started walking around the house a bit without my walker and felt pretty confident (as long as there was wall or piece of furniture near by). Scott suggested that my cane might be a good idea - so I grabbed Michael (Michael Cane - get it? I know, groan) and no longer need the walls. Somehow I can walk all around and even carry things (water, coffee, my phone) without mishap. I can also pet the dog. I'm not ready to take this new skill outside yet. The idea of walking down even a little slope with a cane terrifies me to my core (it's still scary enough with the walker). But it will come.

Needless to say I was very anxious to get to physiotherapy this week and show off. Both my physiotherapist and occupational therapist were amazed at the improvement in my balance. We will never know what happened but theories are that a. maybe there was a bit of infection running me down for awhile, b. the forced rest was just what my body needed to really recover or c. it was just time. Whatever the reason, I'll take it.

We did a balance test yesterday, just to properly document and quantify things. This is a standardized test used by physiotherapists to establish fall-risks and get a benchmark for appropriate walking aids. I'm pretty sure I've mentioned it before. We did the test for the first time in April of 2017. At that time I was a high fall risk (wheelchair dependent), which made sense. By August I had moved into medium fall risk (walker dependent) and by November I edged into low fall risk (but still walker dependent) . I knew that the score itself would not drastically change but I still managed to gain several points and move into the low fall risk (cane outdoors) range. This does not mean that I am actually ready to take a cane outdoors (if the earth was flat, I would but alas, hills). There are always considerations outside of the test. In my case, my feet. My extreme dropfoot means that I am totally reliant on braces (AFOs) to walk and makes some things (like walking downhill) very difficult. But that is an aside... The point of all this is that I rocked the balance test and have really made remarkable improvements over the last year. My physiotherapist was so happy she gave me a photocopy of all of my scores to put on my fridge:) She also gave me some more exercises to kick my butt and make sure it all doesn't go to my head!

So there it is. Sepsis sucks. I do not recommend it and hope I never have to go through it again. But I came out swinging and am loving my renewed energy and increased balance and mobility.

Until next time...