I do apologize for my recent absence, folks. It was unplanned and unexpected.
You see, I’ve been thinking and working on drafting a relatively complex, deep post that requires a bit more work than my usual – something on disability and faith. I’ve been talking to other PWDs I know to see if their experience fits into how I am breaking things down, and starting to write what will be a very in-depth piece, I hope.
And then this weekend, I found out about a two day feminist disability response training. I thought OH! That’s right up my alley! So Tuesday I went to the first day of the training…and we had our first day of severe thunder storms.
Storms are hell on me, especially thunder storms. I suspect it has to do with the wild barometric pressure shifts, especially here where storms blow through, rather than sitting her and staying at low pressure for a while. So the pressure goes up and down and up and down and…ouch.
Now, I knew that I was going to pay for sitting up for 7 hours on less-than-comfortable chairs for the training. I didn’t expect the cost to be as high as it was, though. I missed the second day of training, because my pain levels were hovering around a 9 for large portions of Wednesday. I was not able to get out of bed for more than about 5 minutes, because the pain in my back was so incredibly severe. Worse for me, Wednesdays are the day the boyfriend goes out to school about 90 miles away. He leaves in the morning, often before I wake up, and usually gets home for a late dinner at best. This meant that when I needed to eat, I had to get downstairs to get food – not that I did much eating, as I threw up almost everything I ate. I tried to keep a small amount of something (usually apple sauce) in my stomach, because throwing up with an empty stomach is much more painful for me. I was also sweating like mad – pain makes me sweat, and in addition to that, that much pain makes it impossible for me to accurately tell what temperature my surroundings are, so I either get very cold or overheat.
And so I read – reading is, for me, the best way to ‘escape’ pain. A way to be not-here, not-now, not where I am suffering. It is in no way shape or form a complete escape, but it allows me to distract myself somewhat from the agony of my body.
I stopped throwing up early Thursday morning, thank heavens – I was starting to worry quite a bit about dehydration, between the profuse sweating and the throwing up. During the night, I slept fitfully – half an hour to an hour at a time, profoundly uncomfortable because the sheets were so wet with sweat that they stuck to me. I woke the boyfriend up often, bumping into him as I turned over, or in need of another small serving of apple sauce so I would have something in my stomach the next time I threw up. If I had more presence of mind, I probably would’ve asked him to sleep on the couch, except then I would be in a bind if I needed his help as he would be downstairs. He sleeps very heavily, so it is often impossible to wake him without touching him. At 6, I finally grew so miserable with the sheets sticking to me that I woke him up in tears and begged him to please, please change the sheets. Wonderful man that he is, he did not grumble in the slightest after being woken so often to help me.
Thursday was much of the same, though at a slightly lower pain level. As the boyfriend was here, he was able to do some gentle massage work to attempt to lower my pain levels, which helped significantly at times. I forced myself to start moving, as remaining in bed for long will actually worsen back problems, and one of the most important things they taught me in physical therapy was that you needed to rest, but you also needed gentle movement and stretching! I used the Gazelle exercise machine (which I highly recommend) for just a few minutes at a time, to get everything in motion. Around 4:00, I was finally feeling well enough to have the shower I so desparately craved….though it set me back as far as pain and sent me back to bed for the rest of the day.
Because my pain levels were high, things made me cry easily. My poor boyfriend – I can only imagine how confusing it must have been, as I cried in frustrating at my broken body, cried because of how madly in love with him I am and how happy he makes me, cried as we talked about the test I still need to do to see if I have the more dangerous form of EDS, cried again because of how I love him… And besides that, I kept having to kick him out when the pain became too much and I needed to pick my book back up and be not-here.
I have forgotten to speak of medication. Almost any chronic pain patient will tell you that they are in some way under-medicated and in pain. Many of us have a decent baseline, meaning that so long as nothing goes wrong, we are in low enough amounts of pain to have some level of functionality. I fall into that category. So long as I have nothing acute happening, the slow-release morphine my doctors have me on is enough to keep my pain at a relatively managable level. However, my pain specialist refuses to give me anything for breakthroughs or any muscle relaxants.
So what happens? We hoard the medications we need but are not often given. What else are we to do? So I have a small amount of vicodin and a few muscle relaxants, from past injuries and old medication regimines. It scares me sometimes, how little there is left, and knowing that I cannot expect to get more. They are very carefully meted out, half a pill here or there when the pain is unbearable. Wednesday and Thursday, I took muscle relaxants and small amounts of vicodin to supplement my usual pain regimine. Even with that, I was spiking up to a 9/10 in pain, the kind of pain that makes you throw up, whimper uncontrollably, thrash feebly to try to find a position that hurts at least a little less. If I thought I could have gotten help, I would have gone to an emergency room…but most emergency rooms have little willingness to treat chronic pain patients, even when they have an acute new cause of pain. No, it would have just meant 2-3 hours sitting in uncomfortable chairs as I waited to be called back, and then another few hours laying on a gurney that is far too hard and increases my pain.
The storms finally lifted around 10:00 last night, and my pain level suddenly plummeted to near normal. I slept peacefully last night, unlike the two nights that preceded it. And today…today I am where I expected to be on wednesday – stiff and sore, to be sure, but not in so much pain that I cannot get out of bed or need to supplement my normal medications.
I suppose this is another day in the life – not average days, though, but bad days.