In the week after Christmas, I developed a fun new symptom. A mild eye twitch. About a week later, it had ramped itself up into a full blown eye spasm, which would make my top and bottom eyelid hard to see out of and my eyebrow appear to be drooping and my cheek smiling. With it came increased confusion and word-finding problems. The best bit about word finding problems is how it makes it nearly impossible to accurately describe one’s symptoms to a doctor when you can’t make the word for what you’re feeling, or the medicine you took, etc, come out of your mouth. My other half finally made me go see a GP when I was having pain like someone was trying to push their way out of my head from behind my eyeball, which would then turn into a headache which would then make me tense up and my neck would join in.
Not knowing what to make of these symptoms, which are outside of the *normal* everyday pain of ME that I experience, of course I want to go to the GP and A) find out what it is and B) make it go away. I tend to avoid GPs at all costs because 1) no one educated likes being treated like a fat, uneducated, hypochondriac, whiney baby and 2) it is hard to educate someone about a subject that you are well versed in (your chronic illness) when you have word-finding problems and 3) body shaming happens every time and 4) they don’t actually help you and 5) all of the above can often leave you feeling hopeless and suicidal afterwards.
I didn’t get to book in with the GP that I have gotten to know, who avoids body shaming and seems to know anything at all about ME because I wanted my husband to come with me for moral support and had to book on a Thursday. I got a locum who looked about 15. I told her that my eye muscles were spasming painfully. She said “it’s twitching?” I said, well, no, it *was* twitching and now it’s involving my whole face and keeping me from opening it full stop at times and closing it at others, which I would call a spasm. “Twitching then” she concludes. After being told this is perfectly normal (if it’s not a sign of something dangerous or worrying fair enough, say that, but stop calling it normal, how is my whole face painfully scrunching into a ball on one side so that I cannot see *normal*??) and it usually goes away after a few months. A few months. But after further consideration she thinks it may be migraine, which I do also get, but hadn’t thought of because I wasn’t getting any major aura, and I hadn’t normally ever experienced my whole face attacking me during a migraine before. But it made sense of the severe confusion, forgetting my own street name, not being able to tell taxi drivers how to get where I needed to go, worsening of word-finding issues, forgetting what I was doing *while* I was doing it, and generally looking like a zombie. So off I went with a triptan prescription (but only after giving her a gentle lecture on safety for ME patients after she had suggested that a bit of “gentle” swimming can help cure “things like ME”).
A week of triptans and no better, and I get one of the old hands on a phone appointment. I tend to avoid him because he totally misdiagnosed my bout of meningitis a few years ago as just another OA and/or ME symptom flare (I ended up in an ambulance and hospital a few days later that time). But, miracle of miracles, he was actually a reasonable partner in my healthcare this time. Maybe because he couldn’t see my fatness over the phone he took me seriously? He listened when I said that in general, aside from some flares, I had been controlling the pain and avoiding pain killers and that this was NOT my normal everyday ME myalgia. And he listened!! I emphasized that I knew I had a clean MRI a year ago and I was sure it wasn’t something like a tumor and that my concern wasn’t “oh crap hypochondria” but rather “this hurts more than normal make the pain stop.” And he listened and agreed! And I said I’d looked on the migraine trust website and looked at the different side effects and he actually listened and agreed to let me try the one drug with the least shitty set of side-effects for me! He actually listened and didn’t send me away with just, well, nothing, because I didn’t want to take the one that causes weight gain or the one that causes low blood pressure. A GP actually listened. Tiny minor miracles of the chronic illness day.
And it seems to be working a little bit. We’re only four days in, so I’ll shut up now, because lord knows how many things I’ve tried that I think might maybe possibly be working but no not really, just random variability of symptoms. I have actually gotten a bunch of stuff done today, including an actual blog post (hello), but I haven’t actually left the house or anything yet in the past four days. I have to go pick up the rest of my prescription, do school run, go to Parent Teacher night tonight, get some real (i.e. thesis) writing done tomorrow, and see my supervisor. So we shall see. Wish me luck.