I shouldn’t be writing this, because it’s way too early to call. It’s 8:30am. I’ve been up for an hour and a half. But even when I woke at 6:30am to take my oxycodone, I could tell today was a better day. Not a full body mega flare day.
I have inflamed hands, feet, knees, hips, shoulders, lumbar spine and cervical spine. But the pain is mostly back to 6s and 7s down from 8s and holy-mother-of turmeric-what-in-the-world-did-I-do-to-deserve-this pain?
It’s looking like a better day. My head is much clearer. There is room for sensations other than pain, nausea and fatigue. I feel much more alert. The fog has lifted. Some.
I am thinking about things that need doing, and there is a chance I may actually DO some of them.
Again, it’s too early to tell. I may be posting in three hours that the full body mega flare is back and I can’t get up off the couch. My inherent optimism is still alive, if not so well, even through the last few weeks of RA smackdown.
For the last two nights, I have slept.
For the last two months at least, I have been getting by on around 3 or 4 hours of sleep a night. Lack of sleep creates a downward spiral that is hard to pull out of. Being sleep deprived destroys my ability to think logically. I get stuck in the hole, unable to see a way out.
But for the last two nights, I have dosed up heavily on Valium. So that I can sleep.
This is NOT recommended by my GP. He wants me to stop doing that.
But he is wrong, unfortunately. I have to do what I have to do to survive. And sleep allows me to survive. I have a long appointment booked with my GP on Monday. I am going to talk through my pain management regime with him, as he has steadily been trying to force ween me to less pain medication. Less targin, less oxynorm. All oxycodone, just slow release and immediate release. He is simply prescribing less than I need.
He doesn’t understand that without enough pain relief, and without sleep, the pain gets worse, the brain fog gets worse, the fatigue gets worse and I become a non-functioning human.
Yet there are medications available that can help me live a better life. A more capable life, within the context of being disabled by illness.
I’m not looking forward to the conversation. However the last two nights experiment with going back to taking Valium at night to sleep gives me purpose. And assertiveness to explain that I need these medications to take care of my kids.
There is a line, and I have been well below it for many weeks. Today I might just be above the line. Maybe. And the reason why I am above the line is because I have been sleeping.
I didn’t sleep all night long. I got to sleep about 11pm. I woke at 1am. I woke at 3am. And I woke at 5am. But in between, I slept. Properly.
The night before was the same.
It’s still not sleeping a full 8 hours and waking refreshed. Not even close. I haven’t done that in years. I may never do that again!
But it’s enough. It has made a huge difference.
And on Monday I need to explain to my GP why I need Valium and oxycodone to survive. (No, that’s not an exaggeration.)
I understand and accept the risks. I really have no choice. Now I need a medical professional with a prescription pad to support my decision. Or explain to me why these medications are more dangerous than living the zombie life of pain and disability. And depression.
I’ll let you know what he says.