As an autoimmune patient, I’ve written a great deal about the experience of my disease process.
And I’m sure I will continue to share what I experience in the future.
Honestly, though, I wasn’t sure I was going to share what I woke up to earlier today – because I don’t quite know HOW to fully explain it. But I’m going to try.
First, let me say that one very real fear that I – and many of my spoonie sisters – live with (and have to work through) is the fear of what each day is going to bring. By that, I mean I often wake up with a different set of symptoms in the middle of a sleep cycle or when my alarm goes off (I won’t say “morning” because I keep an odd schedule).
For example, I’ve written about the first time I woke up with INTENSE pain like a jack hammer hitting the insides of my knees. I couldn’t walk on them. It was terrifying. Of course, that has happened many times since – but the first time was certainly the most disconcerting.
When I woke up today, I had the most breathtaking pain I have EVER experienced all the way down my spine. While I frequently describe my spine as feeling like it’s “on fire,” this was a much more intense, heavy type of pain. It made breathing intensely painful and all I could do was call for one of my children to bring me my medicine container to take everything that could be combined and prop up until I could move.
Walking anywhere was out of the question.
This was the kind of wake up nightmares are made of.
After I got it under control enough to move and breathe, I began considering what may have brought this on:
- It was a rainy day today, which didn’t help.
- We have been under a great deal of stress recently, which never helps.
- My daughter and I were both inadvertently glutened a few days ago and my celiac disease tends to trigger my RA. Again, as I would love to tell every server, chef, and restaurant owner on the planet, celiac disease is serious, and, once the gluten is in our bodies, there is no undoing the damage. We just have to ride it out and pray it isn’t too terrible
- Or it could just be Thursday. There is really no way to know for sure.
For now, my pain is reasonable and I have a plan to hopefully maintain it through the night. I am still anxiously awaiting my appointment with the new RA specialist in 13 days, as I am also anxiously awaiting our daughter’s specialist appointment in 11 days.
I would not be honest if I said I weren’t a bit afraid of my next long sleep – still in fear of another painful wake up. But I know I can’t live in fear all the time of those things.
I will sit emergency meds on my nightstand this time, just in case, and go to sleep.
And pray for the best.