I wrote the following post last May and didn’t post it because I needed to edit it. I still haven’t edited, but finally decided it was more important to post that to have it be finished.
May 27, 2017
“I’m so happy to see all of these activities that you’re doing!” When my third friend commented on all the activites I’ve expressed interest in on Facebook—and assumed I’d actually done them—I knew it was time to follow up.
When a chronic illness blogger goes silent, readers generally assume one of two things happened: the blogger is so sick that they can’t keep up or is doing so well that they’re out having fun instead of writing. It’s rarely that simple or straightforward. Given my recent posts, I think most of you have assumed the latter.
I don’t want to worry you. I am doing remarkably well. But that brain fog I attributed to Wellbutrin is actually a side effect of my new treatment. It’s a constant low(ish)-level fog that keeps my mind functioning at about 90% all the time. I can do the normal things of life and carry on conversations pretty well. I feel mostly normal, until I sit down to write and it becomes abundantly clear that I’m not all here. After so many years of cognitive dysfunction, I thought I’d figured out how to work around it. I had as long as it followed the pattern I was accustomed to. That brain fog had peaks and valleys. I rarely become as incoherent now as I did in previous years; I also don’t have the same high-level of functioning that I used to enjoy in the my clearest moments of previous years.
So I don’t write. I think about writing. I try to write. Then I stop because I get so frustrated that I’m not all here. Instead, I spend my time feeding myself (and reading recipes gleefully) and trying to walk five miles a day and practice yoga. Back pain—a result of increased movement in an out-of-shape body—means my schedule now includes weekly visits to a physical therapist and about an hour of special stretches and exercises each day. I actually feel kind of lost right now. “Adrift” is the word that comes to mind.
I’m not sure how to organize my days (and my life) when I can’t think well enough to work and don’t have migraine looming over me all the time. Well, that’s not entirely true. Migraine does loom over me al the time, it’s just a smaller shadow than usual. How I respond to my treatment is still fairly unpredictable. While I do have more good hours in a day and even my migraine hours aren’t as debilitating as they used to be, I still have down time most days and I never know when it will be.
Everything I wrote in May is still true, though I feel less lost than I did. Unfortunately, beginning in June, I’ve also had several significant bad migraine spells. The treatment is still mostly working, but it’s incredibly finicky and unpredictable. I am working on a post about the treatment and promise to publish it even if it needs a lot of editing!
You know that cold that gave me brain fog and fatigue as bad as with my worst migraine attacks? It was migraine. While the mild cold lasted only a few days, I simultaneously developed a reaction to one of my “safe” foods (likely cauliflower). It was triggering migraines that were lower on the pain scale than usual since I’d restarted Ritalin as a preventive. Since I ate cauliflower daily, sometimes multiple times a day, I was in a pretty much perpetual migraine.
I’m getting it sorted out, but am also pushing to introduce new foods to my diet so this doesn’t happen again (it has also happened with coconut and butternut squash). That means more migraines as I find out what’s OK and what’s not and what rotation schedule my foods need to be on. It’s annoying and frustrating, but I’ve got a good plan in place and trust that if I’ve figured this out before, I can do it again.
I’ll probably be quieter than usual for a bit, since my mind isn’t cooperating with this writing thing right now. I am reading a ton, including lots of health-related non-fiction that I’m eager to tell you about. Take care of yourselves. I’ll be back soon.
I’m on day 11 of a cold that has my brain fog and fatigue at levels equal to my very worst migraine days. The other symptoms aren’t too bad, but I can’t think and I can barely move. The longer it goes on the more tempted I am to freak out —
What’s going on? Is this my new normal? Will this ever go away? Are these migraine symptoms resurfacing? Is the DAO not working as well as it did? Was what I thought was a minor cold the start of chronic fatigue syndrome? Could I have fibromyalgia?
Letting these worries spiral out of control isn’t improving my physical symptoms and it certainly isn’t calming my anxieties. I’m working hard to stay mindful and in the moment. All I know is what I feel right now. I don’t know how I’ll feel next week, tomorrow or even an hour from now.
When the fears take hold, I close my eyes, take a few deep breaths and ask myself what I know: I have fatigue and brain fog right now and for the past 10 days. I have a cold. My head pain and nausea are minimal. I feel better today than I did a few days ago. That’s what I know, everything else is just speculation.
Speculation cannot help me know the future. It cannot, in fact, help me know anything. Rumination is a powerful habit that masquerades as useful and helpful. Instead of being fooled by that deception and getting bogged down by thoughts, I’m practicing being right here, right now. It’s tough. It’s also a tiny bit liberating.
( I hope this unedited missive makes sense. I’ve used all my mental ability to draft this and don’t want to wait to publish it.)
My fingers are crossed that I’m in the postdrome of a debilitating five-day migraine. My entire head throbbed with sharp pain localized above my left eye, my left ear ached and burned, and my teeth were intensely sensitive. I was nauseated and dizzy. I’ve been massively fatigued, my limbs feel weighted down, my mind is barely coherent, my body aches. It was definitely a migraine and, yet, migraine’s most famous symptom, head pain, was only a level 4.
This is my new reality. The pain is much less severe than it once was — for which I’m endlessly grateful — but the migraine attacks still come frequently and can still be debilitating. People who have “silent” (acephalgic) migraines can attest to this, but applying it to my own experience is difficult. While non-headache symptoms have certainly been troublesome in my years with chronic migraine, the screaming head pain has always taken center stage. With pain demanding my attention, I didn’t realize just how much of a toll the other symptoms took. Not only am I regularly astonished by how severe the non-pain symptoms are, I’m so used to pain being my guide that I tend to dismiss the impact of any other symptom.
I keep thinking that migraine, with it’s wide-reaching and varied symptoms, is a weird illness, though I have to wonder if migraine isn’t weird, but that popular understanding of it is flawed. Despite patient advocates and migraineurs yelling, “Migraine isn’t just a headache!,” head pain is the symptom everyone associates with migraine. Even I, one of those people who gets that migraine is a neurological disorder with symptoms that affect the entire body, get hung up on the head pain part of the issue.
I wish we could rename migraine and start fresh. That we could disseminate the current knowledge about migraine without the historical baggage and misunderstanding. That we could focus not on the head pain part, but on the neurological, whole body impact. Maybe then the world of non-migraineurs would have a bit more respect for the major impact this illness can have on a person’s life. Maybe then I could have a little bit more empathy and sympathy for myself when I’m laid up and telling myself, “But this migraine’s not that bad.” Because, while the pain was mild, the rest of it was pretty miserable.
The past two weeks have been filled with major brain fog. I try to write and the words just won’t come together. It’s not that I can only turn out mediocre drafts. It’s more like I’m looking at a puzzle and can’t even determine which pieces might fit together, never mind trying to figure out where they fit in the larger picture. I write words, move them around, delete and rewrite, but nothing makes sense.
That’s when I’m trying to write something from my own mind. Even more difficult is synthesizing information from other sources. I read the words and think I understand them, but can form no cohesive thoughts on them. I start sentences and am at a complete loss on how to finish them.
The pain of a severe migraine is horrible, the nausea can be gut-wrenching, the fatigue is a drag… those are all physical symptoms that, while miserable, are separate from my sense of self. My intelligence and ability to write, however, are critical elements of my personality. When I’m shrouded in a dense brain fog, I don’t feel ill, I feel dumb. And that’s something I don’t think I’ll ever learn to cope with.