What I can do and what I can't

I have been dealing with it a lot of reminders lately about just how disabled I am. Most of the time on this blog I focus on things that I think people will be interested in hearing, and I generally try to stay positive, so I don't talk about some of the challenges that I deal with on a day-to-day basis. I also don't talk much about the challenges that people can't see when interacting with colleagues or socially. I think that sometimes this leads people to believe that I'm doing better than I really am in some ways. I am functionally much less disabled than might be expected based on my level of physical disability, and there are several reasons for that. One is that I have a job that doesn't require me to do a lot of physical tasks. The second, and biggest reason in many ways, is that Jeff does an awful lot for me, both at home and things that support me going to work. The third is that financially I can afford equipment and gadgets and all kinds of other things that we have purchased to try to make things easier for me. And the fourth is that I am very determined, and would much rather be doing things that not. Without all of these factors, it would probably be more apparent what my physical limitations are.

Of course I am getting better all the time. In the last two days I have done things that I have not done since surgery, and that I wouldn't have thought possible a few months ago (put some furniture together, brought laundry down to the basement, walked about 30 feet outside without a walking aid). But progress is slow, and it really is unclear how much better I will get. So because I am not always so clear about things like this, but I really do want people to know how I'm doing, I am going to give an update on my physical progress.

I still have serious problems with balance. I still have quite a bit of ataxia, more so on my left side than my right, and this lack of body control interacts with my balance problems in a number of ways. The most obvious is with walking, where I have difficulty making smooth movements and difficulty shifting my weight to the left side. Walking is all about shifting left to right, and I have to consciously tell myself to shift left basically every time I take a step. Some aspects of this are becoming more automatic, but in some ways as things get better more problems are uncovered – things that were hidden before behind some other problem. This inability to do an automatic weight shift to the left means any form of walking is effortful, inefficient, and sometimes painful when my body winds up spending time in a position that it is not designed for.

I still have very limited sensation on my right side, and unfortunately now I'm having quite a bit of neuropathic pain throughout the right side of my body. This lack of sensation, coupled with coordination problems, means that I cannot do a lot of tasks that I used to think were simple. For example, I can't reach into my bag and find my keys with my right hand, and it takes concentrated effort to do something like screw the lid on the toothpaste tube. The problem that I run into is that my right hand can't do it because I can't feel the position of something small and my hand, and my left hand can't do it because it's too shaky. I have found ways to work around certain problems, often using visual cues to help, but I am limited in what I can do. Also, I am no closer to being able to type than I was six months ago. I am getting better with the speech recognition software, but the software is very buggy and often causes problems on my computer. I can write with a pen and paper, but it is slow and requires quite a bit of effort, and after more than a couple of minutes of writing, I end up experiencing a great deal of pain.

The neuropathic pain I feel throughout my body feels sort of like what your hands feeling like when they get so cold you can hardly feel them, and then run them under hot water. It's like an intense burning sensation, with a sort of pins and needles feel. I currently take medication that makes this tolerable, but it never goes away. If I forget to take my medication (which I have to take four times a day) the pain takes up so much of my energy and attention that a lot of my physical abilities kind of start to fall apart. Also, doing physical tasks exacerbates the pain, which makes everything a little harder.

With everything being so effortful, I have limited attention to spare. When I'm focusing my attention on walking with my crutches for example, I really can't look around much. Shopping is excruciating and I can only handle it for about 20 min. Trying to integrate all that sensory information takes way too much attention. Apparently the region of my brain that was affected plays a large role in transmitting sensory information to parts of the brain where it is supposed to be integrated, and this process is a little bit disrupted for me.

I can't carry a class of water without spilling it, I can't just go for a walk somewhere, I can't leave the house without having a plan, I can't do things like prepare all of my meals if I want to have any energy left over for other things. Almost every single thing I do, from getting dressed and brushing my teeth to getting in and out of the car and driving, takes longer and I have to work harder to do it. People can see the mobility challenges, but it's hard to see the rest, because I compensate for it in one way or another, often by having Jeff do things for me that I can't myself. I am extremely lucky to have Jeff, to have a job I can do despite my limitations, and to have the resources to deal with this situation. I am not writing this because I want sympathy, I just want to try to share my experience. It's hard. And even with all of the challenges, there are many good things. I will share some more of the good things in my next post :-)