So it’s after 1:30am here in southeastern Virginia, and I can’t sleep. Today – well, yesterday – has been a bad day for pain, and it hasn’t gotten any better yet. I woke feeling, well, not too terrible. But by the time I got into the car for the thirty-minute drive to work, I was already pretty sore. By the time I got to my desk, I was in real pain. By 12:00, I’d called my pain doctor’s office, and by 12:30, I’d decided I needed to go home. When I got home, I took a narcotic painkiller and a muscle relaxant and went to bed. After a couple hours’ rest, I got up, sore but not terrible, and set up my laptop to put in a few more hours of work. When I work from home, I sit on my couch, which reclines, and I put my feet up, and put the laptop on a lap desk in my lap. The screen is then at just the right height for my short trunk, and my legs and back are supported. On a good day, I can do that for ten or twelve hours. This was not, however, a good day. When my mom called two hours later to invite us out for supper, it was hard for me to stand. When I got to the car to head up to the restaurant, I thought it might be a mistake. By the time dinner was over, I was completely miserable again.
The injections I had six days ago were in the joints between my cervical vertebrae – in my neck. And while my neck and shoulders are stiff and sore, the worst pain is in the thoracic area of my back, below the shoulder blades, mostly along the spine, but radiating outward. And my hip joints, sacro-iliac joints, and knees are acting up, too. Basically, my entire body is revolting, and I’m stuck in the middle here trying to ride this wave of painful suckitude. I haven’t hurt this bad since last November, and that month was so awful that it is a blur to me – I cannot actually remember what happened during that month, other than to nod vaguely if someone points to appointments on my calendar. It’s bad.
So. Hopefully my doctor’s office will call me back tomorrow. I’ll call again around noontime if I haven’t heard from them yet. I’m going to ask for a note from the doctor saying I need to work from home – at least through the recovery period of my third prolotherapy session – so that I can take the really strong medications without worrying about driving. I’m going to ask if we need to do the same diagnostic x-rays on the thoracic spine that we did on the cervical, to see if those joints are unstable, too. And I may ask for a stronger muscle relaxant to take at nighttime, so that the muscle tension and pain don’t continue to keep me from sleeping.
Meanwhile, I have an appointment with my ENT doctor tomorrow, to do a recheck on my Meniere’s Disease and to evaluate me for possible allergy testing and injections. But the thing is… I don’t want to do allergy shots until after the prolo is done, at least this time around. They probably interact okay, but knowing that the allergy shots contain a small amount of the allergen, and that we’re injecting me at the same time with stuff that is designed to cause inflammation in the body… well, that just sounds like a recipe for discomfort. So I’ll probably ask if we can set that up for later in September or October. He’s a wonderful doctor, so I’m sure he’ll understand. I saw him last spring when I was having great pain and ringing in my ears, and I was terrified. It turned out that I was having spasms in the muscle that attaches the jaw to the skull, and that each spasm was resonating strangely through the ear canal. It seemed totally bizarre at the time, but now I just nod my head at one more instance of the bizarre stuff this hypermobility syndrome causes in my body.
I’m finding my thoughts and emotions settling into the patterns they were in last November. There is fear, anxiety, despair, anger, frustration, annoyance. There is grief for the promise and potential that I see, just beyond my grasp, just past the place I can get to without being completely drained. There is the internal monitor, the one who questions every decision. What will the cost of this be? Is it worth it? Whether it’s staying up a couple hours later than usual to watch a movie – and thus delaying the taking of my bedtime meds – or going out shopping with my mother, there is some kind of cost to my body and my mind. There is the sense that people don’t understand, that they think I’m making it up because they can’t see anything wrong with me, that maybe I am just being a drama queen. There is the desire to not be a whiner, to not want to wear everyone out complaining, to not want to be a pain in the butt for the people around me. There is the wish to be independent, and to stubbornly ignore the fact that this is impossible for anyone, much less someone with chronic pain. There is the financial burden of the medications, the doctor visits, the physical therapy, the special treatments, and hell – all that danged gasoline!
And at 2 in the morning, when my daughter and the kitties and the birdy are all asleep, when everyone I know is at home sleeping… there is a sense that I’m alone in this. So after I publish this post, I’ll have a drink of water, lie back down in bed, and read my book again for a while. And maybe, sometime before my alarm goes off at 6, just maybe I’ll get some sleep.
Keep watch, dear Lord, with those who work or watch or weep this night, and give your angels charge over those who sleep. Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous; and all for your love’s sake. Amen.
I lie down in peace; at once I fall asleep. For only you, O Lord, make me dwell in safety. ( Psalm 4:8 )