First I'll give a wee update as I have been mia for some time. I'm back on IVIG and, so far, so good. My neurologist decided against subcutaneous treatments for now and instead opted for what I call Plan A, Part 2. I now receive IVIG every four weeks with some new safeguards against reactions. The biggest change is that instead of taking 3 hours every day for 5 days, it now takes 7 hours each day. My IVIG week is now really just that - no physio, no occupational therapy, no choir, no lunches (sigh). It is exhausting but worth every minute and every drop of the goopy plasma as it really makes me feel so much better. If I am to be a vampire, sustained by the blood of others, there must be some limitations, no?
Ok on to the reflective portion of the post...
Two years ago I was lying in a hospital bed with paralysed legs (one in a cast). I relied on nurses to help with the very basics of everything. Even at this, the lowest point of my experience with CIDP, I was not too down about things. I was, as my doctor put it, in 'fight mode.' I never really allowed myself to consider the possibility of not recovering. I knew that things would kick in and just needed time to do so. In retrospect I have no idea how I stayed so positive. What is even more amazing to me is how Scott stayed so positive. I can't imagine how difficult it was for him during that time. But we got through it and things did start slowly improving.
Fast forward a year and things were quite different. I was home and able to take care of my own needs. I was in a wheelchair but seeing improvements. For one thing, I could stand up using my own steam as long as there was something to hang onto. I was starting to use the walker for transfers at home. I was battling fatigue and weak hands. I knew that I still had a long way to go and would get there but felt pretty good about how far I had come. When I look back at my journal from this time it is filled with excitement and hope. The highlight of November 3, 2016 was that I could undo the clips of my splints with one hand for the first time in months. I need to remember this when I complain about my hands now, I've really come a long way. My biggest goal in physio at this time was to walk with the walker without the wheelchair following me.
The changes over the past year are really quite incredible. I haven't taken the wheelchair out of the house in months, for one thing. I'm even starting to walk around the house without the walker a little bit (as long as there is a wall or sturdy piece of furniture in reach). My hands are up and down in terms of pain and usefulness, but they have regained a baseline strength that is acceptable. Last night I held my music instead of using a music stand for the first time - just one of those little big things. I'm primarily focused on leg and core strength and making progress. I'm starting to be able to stand up without using my hands - as long as the seat is high and stable enough. This may not sound like much but it was a pipe dream not so long ago. I've gone from being the patient looking wistfully at others who can do so much more to being the patient that is looked up to! Last week, a new patient in physiotherapy told me how he hoped he would be able to get on the treadmill like me one day. This comment gave me the warm fuzzies in a way that few could understand. Heck, I'm still amazed that I can use the treadmill - it's awesome!
My physiotherapist and I were chatting about this the other day. We've been working together for almost a year now and she is constantly impressed with my progress (not to toot my own horn, though she deserves as much of the credit as I do). She likes to remind me of how scared I was to let go of the walker or bars when standing when we first met. It took a lot of work, patience, guidance, and medication to get where I am now. Not that I'm done - nay nay, we're just getting started!
Who knows what another year will bring. I'm sure there will be ups and downs. There may even be a plateau - there is bound to be eventually. I'm still a long way from where I was three years ago. I still hope to get back to work and have not given up hope that one day I will take the dog for a walk in the woods. These seemingly mundane goals keep me going and fuel my positive outlook. I refuse to get mired down in thinking about what has been lost or what I can no longer do. I still have everything that matters - an awesome husband, great friends, a supportive family, a goofy dog, a roof over my head, books to read, music to listen to and sing, and my own mind (it may scare you, but I like it just fine:)). If anything, I am more appreciative of these things than I was three years ago.
So there it is, a little perspective. Chronic illness is tricky. There is no clear path or knowable outcome. It doesn't go away (being chronic and all). All we can do is roll with the punches and make the most of each day. Man, that sounds lame. Yeesh. I think people experiencing chronic illness all find unique ways to help them deal with it. My way is to work on small goals and to celebrate the little things - to try to remember how far I've come without losing sight of where I want to be. In other words, to keep things in perspective.
