I apologize for my woeful absence of late. I would love to promise that it won’t happen again and that I’ll be the ever loyal, prompt and courteous host from here on out, but if you know anything about Myalgic Encephalomyelitis, you know I’d be lying, no matter my intentions. So instead, I’ll tell you a bit about why I haven’t been around the last three months.
In late October, I felt myself beginning to slip into a flare up. Despite having fully overcome my bout with diverticulitis and getting my orthostatic intolerance under control, I was dealing with increased fatigue, ever growing colonies of candida in my mouth, throat and vulva, wide-spread muscular pain, an IBS flare up that had me running for lomtl one week and miralax the next, along with neurological symptoms so crippling a simple night light could bring me to my knees.
By December, I could spend no more than an hour out of bed most days, usually with the TV off and the lights down low; though often it mattered not because the “auras” I experience with my “chronic migraines,” as my neurologist likes to call them, are more akin to a fireworks display going off during the most brilliant of the Perseid meteor showers over the Aurora Borealis in an Alaskan sky; and they go off quite literally for days. These auras cause me every bit as much pain as bright light, computer screens or TV’s cause most sufferers—and there’s no way to escape them, even when I close my eyes. They are not a precursor, or a warning sign, they are a constant volley of ammunition, replacing what should be blissful rest with terrible ripping pain. In fact, they are sometimes my only pain, but they are utterly inescapable, no matter how many nerve blockers or triptans I take, no matter how dark the room.
Use of my computer and cellphone were strictly forbidden, even at the absolute lowest brightness setting I could use. If I looked at them for longer than 2 minutes, my brain was a throbbing mass, my vision a swimming assortment of auras and nausea would overtake me in great waves. This would of course cause my blood pressure and temperature to spike, triggering my OI, my tremors, and interestingly, my anger, almost every single time. I pretty quickly realized that to touch either phone or computer almost certainly meant that I would not only be stuck in bed for whatever was left of the day, I would be stuck there contemplating what a miserable pile of human excrement I had truly become for yelling at the sweet man who was only trying to care for me.
I could tolerate my tablet for extremely short periods, but I often fooled myself about how long that was (it’s amazing what boredom can coax you into doing to yourself). I tried to use voice typing to do a blog entry, but I would keep forgetting the last thing I just said. I would start to get extremely queasy and take promethazine, setting the tablet aside.
I opted instead to listen to an audiobook. I had to be extremely careful about this as well. I asked the poor man I screamed at almost every day if he would set up an account for me at audible through swagbucks so I don’t have to look at the computer.
The next day, I signed in on my tablet and searched for the perfect book. Not that one. Not that one. That one looks interesting, but let’s move on. Oh this one looks perfect… and download it. “Oh fuck. That took too long. Honey, I need the bucket.”
The next day, when I finally start listening to the book, I know I have to listen quietly, but carefully. I have a tendency to let my mind wander when I have nothing visually stimulating to hook my attention and I don’t want to keep looking at the screen to hit playback. And if I inadvertently listen too loudly then…. Noise, any kind of noise, can be a problem when I’m in a flare up. I’ll try to explain why.
Medically, it’s known as allodynia, this painful response to the stimulation of the senses. It can happen to them all, and for me, I have had it with touch, smell, hearing and sight, but never taste that I know of. Anyone who has ever had a migraine knows what allodynia is even if they’ve never heard the word. It’s an inability to tolerate a particular sense or range or stimuli to a sense. An obvious and well known example is an inability to tolerate bright light during migraines. It’s not uncommon to have the same problem with loud noises with migraines, which I also have, but this time the noises didn’t have to be loud, they just had to exist. For example, when the tiny little dachshund upstairs ran across the floor it felt like he was trotting across my naked brain.
If I started out listening to my audiobook at too high a volume, It took only a moment to realize my mistake, but there was no going back. The damage was done and I was out a rizatriptan (possibly two), 50mg of benedryl, a unit of toradol and one day away from being able to try again. That’s a huge deal when you’re allowed no more than 9 rizatriptan and 4 toradol a month.
This time around I suspect that I had a migraine for no less than 60 contiguous, if not continuous days—and I’m quite certain I’m being conservative in this estimate. I can only give this estimate because I’ve managed to have two or three blissful headache-free days in a row, though my eyesight is anything but OK. This is all in spite of taking different preventative migraine medications, supplements and antioxidants as well as those I mentioned I take once they’ve begun. I maxed out all my scripts and everything the doctor could conceivably give me from his sample closet and at best it bought me a few precious hours out from under the covers, but still not quite pain or aura free.
Yet I do not abuse my medications. If anything I’m more likely to under-utilize them. I rarely ever finish my tramadol every month. I’m allergic to most opioids, so there isn’t much for me to abuse. Really, I don’t take the drugs much because they do so very little to help and most things they’ve tried have side effects that hurt me as much or worse than the things they are trying to prevent.
Still, this disease is attacking my nervous system and it appears to be doing so rather aggressively. I anticipate it won’t be long before they find lesions on my MRI and they will add a diagnosis of MS to my ever growing roster of all star diseases, as is common for people like myself who linger for years in the moderate to severe category. On the days I’m being cautiously optimistic, these things make me desperate for an effective treatment. On the days when it seems like this reality is the only reality you’re ever going to see again, these things make me desperate for a hollow point bullet.
And yet somehow we always manage to find yet one more drug that allows me to crawl back out from under those covers. Somehow we manage to turn the tide moving to where my days grow longer than my nights. So writing this piece came with the gift of pain, as most do. So the words seem to come a little bit harder each time. At least, somehow, they are my words. At least they are still coming out.