This week is spring break at my school, but for me since I am on medical leave this week just seems like any other week. I am in a holding pattern this week, getting discharged from home health today, so no PT/OT coming in, but it isn’t until next week that I go to the Drake Center to start PT/OT there. I am basically homebound except for appointments, and I cannot wait until I am more confident going out on my own. As the weather gets nicer this stark contrast grates on me more.
My Neurology appointment is finally in sight. In some ways April 11th cannot come fast enough. I have so many questions, especially about my prognosis. Today I am having a really bad muscle spasm day where both of my legs are literally locking up, and walking is almost impossible. I feel bad because I want to help around the house with the cooking/cleaning and laundry but it is hard when I am like this. I walked around a bit this morning, but I am probably going to use the chair much of the day going forward.
I have lots of questions about bowel/bladder and what that will look like going forward. Although my right leg as I have said has come back pretty well, I still get lots of nerve tingles and muscle spasms on my right and I cannot feel my toes (as evidenced by my toenail injury) and honestly most of my foot. My left leg I have good control in the upper half, and almost none in the lower half. I know that nerve growth is slow and never a sure thing, but it disheartening not knowing exactly how much I will get back.
The other thing is my new muscle relaxer works pretty well, but it also spaces me out a bit, and if I have to combine it with the gabapentin, I usually have to lay down/take a nap. I am currently writing this with one of the muscle relaxers on board and I am having a bit of brain fog, but without that today I would be in crazy pain. Just one of the many adaptations I am making.
Other things I am adapting is what and how I am carrying things while in the house/out of the house. I have discovered Sipsey Wilder, and ordered a couple of their bags. Even around the house, if I am wearing a pair of pants without pockets (don’t get me started on that soap box) I can easily carry my phone and a few essentials like hand sanitiser, my airpods and lotion. This bag works both if I am using a cane, walker or my wheelchair. They come in many colors, and while I choose the rainbow cats to start, I will probably end up with a few more. I did order a different bag, the three in one in black and I have plans for that for underneath my wheelchair.
Let’s talk about wheelchair bags. The ones that are designed to go on your wheelchair have a decidedly medical look to them. I’m already in a wheelchair, I don’t want to call attention to the fact with a big handicapped patch, or medical patch. I understand the need and desire for some people who need those things, but I do not. I know a lot of bags have to be designed for all sorts of wheelchairs whether they are power, manual or transport chairs. Is it too hard to ask for something functional and fashionable? Bonus points for security as well.
I have come up with a hack currently that I think works pretty well. All I needed was a bag I could live with a removable strap. This Travelon bag has a removable strap so If I want to carry it cross body style i can. It also has security locks, which are perfect. While not the most fashionable thing, it is functional, with plenty of pockets. It does fit a notebook and an iPad which is important at conferences and things. Eventually I will need to find something that can hold a laptop. I have attached it with some zip-ties, key rings and carabiners. The carabiners are the locking type so someone would have to be ultra-close to me for a good bit to take the entire bag.
I foresee myself playing in my wheelchair for most of my gigs. I so far have been having a problem finding a black bag I like that I can put on the back, but I don’t always feel comfortable leaving my personal effects in the green room. They do make bags that hang under the chair on one of the crossbars. Sipsey Wilder to the rescue here again with the 3 in 1 bag. Detachable straps are key with D-rings that I can put carabiners through to attach via keyrings and zip ties to the under crossbar of the chair. Since it is black it will not be very noticeable during a concert, and perfect for putting my phone and a few personal effects I need to keep close.
There are other adaptations of course, but this post has gone on long enough. That and the brain fog is getting pretty intense right now.