I won’t deny this isolation has been hard. Not being able to see my therapist or my psychiatric NP in person for our first meetings has already set me back in the diagnosis and treatment process. They can’t see my mannerisms and stims, they can’t read my facial expressions or tone, they can’t tell when I’m disassociating because to them it’s just a long pause over the phone. Some would say it’s better than nothing, but I’ve been dealing with “better than nothing” psychiatric care for over 2 years and it’s done more damage than not. But I have faith in this new facility, these new providers. I’ve only had phone appointments with them after all, in person is a whole different ball game. And I’ll need them going forward. I’m currently struggling with something I’d figured I’d struggle with eventually, but definitely thought I had more time with.
This is something that is incredibly hard to write about, to talk about, to think about. Losing your mobility is hard. And while it may seem contradictory, it’s been extra difficult losing my mobility while trapped in my house. It started with gait issues. I have a “dip” when I walk, it’s extremely hard to describe. I have a video of my gait from a month ago but it’s very hard for me to watch, let alone share. A month ago I was still walking without a walker. I could still get around my house without much difficulty. A few wall grabs here, a few unprompted sit downs there. It was doable. Annoying, but doable.
Now I use my walker most of the time. Sometimes I get excited with some temporary symptom improvement and think I don’t need it, only to end up on the floor of the kitchen with my walker in my room. It’s frustrating, there are lots of tears. My primary care isn’t sure what it is. My neurologist is waiting for my sleep study and it’s results to rule out Narcolepsy with Cataplexy. But my sleep doctor thinks it is too constant an issue to be cataplexy. It does flares in intensity to where my legs become entirely useless, but the uselessness has been more of a 24/7 thing in recent weeks. The weakness I feel in my calves and thighs has become so intense I am just shuffling my feet at times, putting all my body weight on my walker. Which is a sign I should be using my chair, but my house is small and full of furniture so that’s a no go.
It’s a scary thing to lose your mobility. Especially when there seems to be no clear answer as to why and no one seems all that concerned about it. I’m learning to navigate my room, my home, my world in a new way. And it’s hard. I have to think ahead, plan and pack. What do I need to bring with me when I move to the living room? What will I need when I go from there to the kitchen? If I don’t plan, I have to take more time, make more trips, expend more energy. Luckily, I recently got an adorable fox backpack from SkipHop’s zoo collection (not a promotion just in love with this backpack!) to keep me company. It fits all my infusion stuff, my daily planner, wallet, Vogmask, and keys. Plus it also can hold any number of extra art supplies, TENS units, or tarot card decks that I feel I’ll need when I’m moving from room to room. It’s also got padded straps so my shoulders are in heaven! Just looking at it’s cute embroidered fox face instantly makes me feels 1000x better. Who thought a kids backpack could help stave off suicidal ideation?🤷🏻
But seriously, losing my mobility (even though I still have some of it) has really taken its toll. It’s worsened my depression, made me more iritable and impulsive. It has perched me on the edge of a cliff, far below me dark waters from which I don’t know I could ever return. I am seeking help and I am receiving treatment. But with the state of the world, it only helps so much. And unfortunately, through this all my rib pain has continued to increase as I can only do so much PT-wise at home. Thankfully, using my wheelchair does not cause any pain at all. The walker however does cause issues and pain, both in my ribs and neck/shoulders. And thus highlights the problem that practically NO houses are wheelchair accessible and therefore to move independently about my house I have to use mobility aids that don’t quite meet my needs. But that’s an issue to write about another day.
Anyways, I hope y’all are staying safe. And remember this is a time of crisis, you don’t have to be super productive or pick up 3 new hobbies. Just surviving, just being is perfectly acceptable. ❤️