In the past two weeks, my chronic migraines got worse. I had to take off or leave work a few times, and my free time was marred with pounding, excruciating pain. The medication I took would work, but slowly, leaving me in pain for hours before it decided to take effect, if ever.
I should be used to this. My whole life has been lived with these migraines; from my brain MRI in third grade to now, as I write this, as I can feel a heavy weight on the left side of my head. Luckily, I’ve placated it with some new medications, as I went to a migraine specialist this past Friday.
At the appointment, I had to fill out a form, one of many for new patients. This form was an official screening to determine the severity of any migraines experienced by patients.
I answered this form as honestly as I could. I had to count which days I had pain, which days I was debilitated by my pain, which days I had to take medications for my pain… all of it.
I counted up my points and looked at the results graph. If my total score was over 21 or so, I would be considered as having a severe disability. My score was over 100.
It feels strange, to be told (even on paper!) that I had a severe disability. I had become so accustomed to my life in pain, I completely forgot that there could be something better I could hope for. I had taken days off work due to pain, of course, but I had the tendency to chalk that up to my own poor habits or lack of pain management. This is a ridiculous thing to think, but that’s what happens when depression and anxiety get involved in chronic physical pain.
I’m on new medications now. The visit with the migraine specialist was extensive, and the options for treatment were as extensive. My antidepressant, which formerly had been my main maintenance medication for migraines, was kicked over to my psychiatrist for her own management, and I was given a new palette of drugs, all designed for different uses. I took some this morning for my aforementioned pain, and it’s definitely done well.
Writing this, I am struck by how much of this affects me. I knew I had a condition, but now, realizing I have a severe disability, that waking up every day with at least a mild pain in the head is not normal… It makes sense, but it re-contextualizes my entire previous 27 years of life.
Not only do I have to realize this new paradigm, I also have to learn to live without constant pain. I will have to re-learn things, adjust to the new feelings of euphoria from having a painless day. It’s wonderful, but it’s terrifying to consider that I, my self, am going to change.
Thank you all for your support. I have a few pieces in the pipeline I’m working on now, but I’m going at it slowly. I am on the path to recovery, and writing is a part of it, but not the only part.
There is so much I could write about, the idea of visible versus invisible disability, the complicated nature of recovery, the almost-eldritch way in which the soul can change when brought out of a long-occupied crucible… But, for now, allow me to assure you all that I am alive, getting better, and inexplicably, frighteningly euphoric.
Thank you all, again.
- Sweet Daddy D <3
I'm happy you are coming to terms with it and envisioning a life in which chronic pain is not and is not supposed to be normal. I also suffer from chronic migraines and have tried several treatments for it. They got worse when I suffered from burnout and they always get worse with the summer heat. You are not alone, and I'm glad to read this and feel less alone too and that you are processing life with a severe invisible disability. Sending hugs and can't wait to read more of what you write and share!