Ability

I am shaking. I just sat down after choosing to walk to get my bottle of soda. I still wish I could afford not soda to drink but the shaking has nothing to do with sugar and everything to do with the grinding pain of yesterday. I wanted to write yesterday but my brain couldn’t handle moving my fingers and breathing. I ended up going to bed at 9 pm, which is ridiculousness.

I go to bed between 2-5 am. This is a huge variance for some people but is much smaller than it used to be. I sleep every night usually, now. Yesterday my bones had shifted. I don’t have to have a doctor to tell me when the bones in my back moved a milimeter closer anymore, there is no pain quite like this. I used to faint every time. Yesterday I still took my meds on schedule, even though they would do nothing I could feel. I did this for two reasons, 1. Pyschologically taking my meds gives me a bit more stamina when dealing with the sensation of having my spine torn in half. 2. I am sure there is effect because I do feel better without them. 3. Habit. This is a good habit to have, because it protects me from forgetting to take my meds on schedule.

I woke up with this pain. It didn’t wake me but instead effected my dreams, I shifted to get up and almost fell on my face. I could feel the nerves pinching and slicing. It took effort to breathe. I considered staying in bed a bit longer, but the alarm was going off which means it is time to get up. No ifs ands or but I havent’ slept yets. Sprite and Nymph got me upright, and the wall kept me there. My bathroom cannot handle my chair, even removing the door would be laughable, so I slithered along the counter. I peed. Washed my hands. Bemoaned washing them before opening the cat food. OPened the catfood, managed to get the slop into a bowl. Turned, washed my hands again. Noted that my face is covered in zits, which makes me laugh as I look about 12 to myself. Then I, still covered in my darling cats, stumble for my chair and my pills.

I have started putting the daily dose into a small container at night for ease of use and if I hadn’t I would have lost my pill bottle. Sprite and Ny didn’t leave me yet, clinging to me with claws in cloth and purring. They didn’t go to eat until I had swallowed my pill and started trying to get comfortable. Ny went first and I could hear their stomachs growling. They like to eat about four hours before the last alarm goes off. Usually they get to but on days like this, I have that alarm for a reason.

The shaking started then, it was subtle but I spent the day in my chair, and had to have help getting to and from the bathroom. This irks me but is a part of disability. It was around 4:30 that I shifted and made myself raise my arms over my head, despite the sharp pain. I needed my meds after all. There was a loud snap and my newest carer now known as M the Carer (running out of letters here!) jumped. She was startled, and my pain eased off for a few seconds before my brain recieved the sensations of broken bones and pressure increase. I have to say I am surprised I didn’t pass out. I usually do.

Some of you by now are going, “Kat, why on earth didn’t you go to a doctor?!” So before I continue I want to address that, I have gone to a doctor for this over and over, and finally my spinal specialist and I agreed to just avoid the ER. I get sick, they make things worse, and there is literally nothing that anyone can do. Each time my back feels like this, it is the degredation taking a sharp spike. It means I am about to lose ability. That part sucks but I would rather be alone or in my home with friends and dealing with that than in the ER with strangers, with bad seating and puking on strangers shoes. My vomit seems magnetically drawn to shoes when in public spaces and there is no bucket on earth that can contain it. I projectile vomit, so it gets across the room. So this is why I stay home. I did tell my carer what was up, and filled her in on the shifting needs, she rose to the occassion on her second day with me more than admirably. The last time this happened the carer left and quit out of terror. Not M the Carer. She instead told me that if I needed to shut down or reached overload that she’d stay if that was what was best. We’d work that out.

I didn’t overload because M the Carer followed my directions, we got everything done and even had time for a friend to drop in. I haven’t really talked about Lily (so not her name but I have a few friends with flower names so it’s an ambiguous flower name) though she is many blog posts unto herself. Lily is old enough to be my grandmother, but is a dear friend. She reached out to me when I first moed in and told me yesterday that I hadn’t looked that pale or shaky since my first week here. I told her my pain was bad and she understood.

Lily and I chatted for about a half an hour and she went home because as she put it, “You really need your nap today.” I did but I couldn’t sleep. The cats were clingy yesterday because i needed it of them. After M the Carer went home, no lateness to that either, I took some french toast (it was delicious) and curled up with a book. I read three books before my eyes couldn’t see even my reader and it was getting dark. I tried sleeping but for an hour came back online and chatted with a friend about his daughter’s awesomeness. She recieved a huge achievement award froma program for low income kids with undereducated parents. That sounds horrible, but the program is there to help children with less opportunity, and that is the point. Her parents though, make me jealous of her childhood in some ways. Theya re far from perfect but they love and support her.

Then I went to bed. I hurt so much that I had a migrane. I recently was told that’s what that headache is when I mentioned it to my spinal specialist. They are common, and the only cure for me is sleep. I have to sleep until it is gone. Which means it is a good thing I didn’t have a weekend carer yet. It is now five pm, my time, and I have been up for three… okay two and a half hours. I kept getting up to bathroom, I ate something around 10 am and still had to sleep. I am still tired too. I may not be able to walk as far anymore, I barely made it back to my chair after getting my drink off of the counter, which is much closer to me than the bathroom.

I am sitting here and I am wondering what ability is lost this time. THis isn’t pessimism but I am trying to preplan. I watch my hands shake and the room whirl and consider going back to bed, though my body will wake me up at 2 am and then I will be bored and… so I will wait a few more hours before regular naptime occurs. I just dislike losing ability. As good as yesterday was there was this undercurrent of mourning in me, because I never know if I will walk when I wake up after. If not then I am so screwed for the weekends without a carer.

That is in process but there is a dimension of degrading that is often overlooked when I read about disability and that is the toll that a day in day out knowledge that tomorrow you lose something else can cause serious mental health side effects. So often I see a disaprity when it comes to acknowledging that mental disabilities, mental health disabilities, and the physical can all mesh together to create more complex issues. I trust my spinal specialist so much that I will tell you who he is if asked, once I get his permission to recommend him via the blog.

I think I wouldn’t be so accepting of my body without his influence, and each time I visit him I know and he knows there is change. He has been the most supportive doctor I have ever had, and even if I go in and am cranky he’s fine with that. He knows it’s pain. He has answers for my pain and is willing to try somethings that others call revolutionary. He is able to see that just because my body really sucks my brain is magnificent and often the ideas we try are a mix between his actual knowledge and my ideas, he has even taken some of my ideas that failed to other patients (with my permission) and so I have helped random spinally challenged strangers.

Ability isn’t what you can do alone, it is what you can do with the help of others.

This is what I am learning anyway. Just because I cannot walk does not make me disabled. What makes me disabled is the light post in the middle of the side walk, the cashier that tells me I cannot buy something, or the person that decides I am pitiful, while they are unaware that in my life I have done more than they dream is possible because I can.

Yep, it’s five pm, and I am starting to ache again so I am napping early. Bleh. Tomorrow I can try again.

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6 Comments

  1. So, I got in a bit of a tiff with a nurse. Before I can leave I have to talk to a doc. The nursed asked if I had experienced insomnia, depression, loss of interest in normal activities, etc. Yup.

    OMG…why didn’t you come to us earlier?!?!? Said in accusing tones of righteous judgment.

    Because my mental health is my business, not yours. You can judge me for not dealing with my depression the way you, a person who doesn’t have it, would if you want, but my mental health is my call. The doc was much cooler. I explained my bell curve theory (I’m depressed because on a bell curve of people, depression represents normal statical scatter, not because its morally wrong. Just like homosexuality.), and my it’s not a chemical imbalance theory. He agreed and asked that I consider sit point theory. Good chat.

  2. thanks! I hope you are feeling better this evening.
    -D

  3. I am encouraged and inspired by you. I too deal with pain every waking moment. But because of your honesty, I know I am not alone, crying into my food as I shove it awkwardly into my mouth, full of excruciating ulcers and a jaw that cannot open wide enough for a spoon to slide in. It is an ugly sight, and I prefer to eat alone, be alone, exist alone, and since most times just speaking out loud means a lot of pain, I like to communicate only via the internet. You spoke about degradation… It rang many bells in my head. Although my experience cannot come close to yours, with my autoimmunity, that is a constant looming shadow over my head, and lately, I have been deteriorating from day to day. But thank you for giving us all the added dimension of companionship and courageous honesty. xx Please feel better soon. I know it sounds cliched but I think you understand what I mean. xx

  4. I always tell you we shouldn’t compare our experiences though we have a lot in common. I mean that. You have pains I cannot know and vice versa. The companionship thing goes both ways. Don’t forget that too.

  5. Took a few evenings to get there, but I do now.

  6. Her reaction falls into the category of someone who is policing everyone. This is a reason I am secretly relieved that I couldn’t find a therapist. Even if you try to come in sooner, there is always this accusatory tone involved, at least in my head and I dislike that greatly.


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