The fatigue has been severe. Walking is often difficult, and sometimes painful. Standing even long enough to shower is exhausting. One day, I missed an event on campus because, after getting to school a half hour early, the only parking I could find was further than I could walk, and I drove around for a long time before I found something closer-- and, admittedly, sat in my car a while trying to process the fact that things were now bad enough that that had just happened. I missed a few weeks of church because of the fatigue-- something that hasn't happened in a while-- and this past Sunday, barely made it up the stairs to the sanctuary.
Thankfully, I have a wonderful support system, because it's been a lot of mental adjustment- and, with the mental adjustment, physical adjustment. I applied for and received a temporary disability parking permit and was given a temporary permit through my campus to tide me over until the official one came in the mail. I've asked for more help with errands and have tried to limit my on-campus time, working from home more. I bought a shower bench so I can sit while I wash my hair and a counter-height chair to use while working at the sink or counter-- whether drying my hair or putting on makeup in the bathroom, or cooking in the kitchen.
...I should mention the challenge and expense of even being able to get these items-- both items were an approximate total of $80, which I was thankful I was able to swing considering I wasn't planning for that expense that month. Not everyone can do that. For those with less money, or those without insurance, or those with less family/friend support, disability is even more disabling.
Also, finding a shower chair was difficult as my apartment is tiny with not much storage--No room for a chair. Also- apartment. No drilling into tub possible, and we don't have tile anyway, so we couldn't even go that route if we owned. I went with a portable bench that just sits across the tub. It was one of my favorite options anyway, but it was nearly the only item I could find that wasn't super-pricey and that I could use in my place. And, truth be told, it doesn't fit the tub 100% the way it should, so it has grips to stop slipping and legs to brace against the inside of the tub- of which I'm only using the grips and two of the legs on one side, because I think our tub is too narrow and the other ones don't fit. But it's stable enough for my use. (I *don't* recommend this! Always use such equipment as instructed/intended!)
This week, the rain was bad, and it resulted in a lot of pain. My new dissertation proposal is moving forward, and it was a very difficult week trying to make progress while dealing with bad fatigue and pain. I'm still trying to learn to keep my attitude positive when things get bad physically... I can usually manage a couple of days, but after several days of near-constant pain, I become less and less able to handle things calmly. I'm working on it, but I'm not there yet. I often get discouraged or anxious about how things will progress in the future. I get angry at myself for not being able to do the things I want, and discouraged when I let others down as a result of my physical constraints.
And, of course, there are good days. Some days have less pain (although there is almost never a day without any pain). Some days I still am able to wash my hair standing up. Or park farther away from a building. Or walk with a normal-looking gait. Or even take the stairs instead of the elevator. And I love them. I enjoy them. I push myself a little harder (often, I accidentally push myself until I feel a little pain, but I've been careful to not push myself towards extreme fatigue again). But these days aren't very frequent. At least not right now.
While I've only talked about this as a secondary issue here and there, I thought it was important to mention in more detail here. My limitations affect my ability to participate fully in academic life (my last conference was a year ago and only a train ride away, my last conference travel over a year ago). It affects my participation in church, as I've mentioned. It affects the shape of my feminism and activism (travelling, marches, protests-- all things more possible for the physically-abled). And-- it affects my blogging. I started writing this post over a month ago. It seems ironic that my disability has caused fatigue and pain that has delayed my writing about disability... but perhaps it's fitting.