Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.
Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.
I went into the whatever-we-call-a-flare-in-a-disorder-that-isn’t-technically-autoimmune this week. It started with a week of persistently low diastolic blood pressure (in the 40s/50s), while the systolic stayed high enough to just confuse me. Am I supposed to do anything when the diastolic is really low, but the systolic is okay and I’m not really fainting? I’m still unclear on that. Anyone else with dysautonomia have any advice?
I didn’t do anything about it, so when I woke up with intermittent double vision about a week ago, I just assumed it was some new fun symptom of dysautonomia. Or, maybe it was a new migraine aura. I’ve had classic migraine aura, and the movie version of Beowulf will forever stand out in my mind not just because it was horrible but also because it had a blue neon strobe light scene that so perfectly mimicked my then migraine aura presentation that it triggered my one true grand mal seizure of my life. But, for the past few years, my aura has been more like a greying and blurriness, especially around the periphery. Double vision, while lousy, seemed sadly within the realm of ways my body could torture itself.
The double vision kept happening over the weekend, but the expected migraine never came. Worse, my blood pressure actually seemed to clear up. Flare-up over? I’ve written before about how Pokemon Go Community Days are one of our self-care practices. We tried to (gently) attend the one last Sunday. Very shortly after we arrived, my vision went perfectly double. Like, as double as when the optometrist forcibly makes you see double to examine your vision in each eye separately during an exam. My blood pressure was normal and – while the difficulty of navigating home with double vision actually triggered the inevitable two-day migraine – I saw no indications that the migraine itself had caused the double vision instead of the other way around. I spent the next day and a half unable to look at anything in a dark room, so it didn’t really matter to me what my vision was like.
However, I became quite freaked out when, by Tuesday afternoon, my blood pressure was stable, my migraine was gone and my vision was still perfectly doubled. We called urgent care, and they recommended we go in. Unfortunately, I couldn’t see my own doctor, even though we have managed to return to our own city. (Thank God I didn’t have to deal with this in the 9th Circle of Hell.) She was entirely booked that day. It is an indication of how freaked out I was that I consented to see an entirely new doctor, when my medical and trauma history makes every new doctor (even with all the notes following me around in my EMR proving my reality is really reality) so terrifying that I’ll do things like refuse to go the ER when my diastolic blood pressure is in the low 40s. The urgent care doctor was actually competent (!), and after she did the standard “check me for stroke and heart attack,” she recognized that, although I have multiple potential causes of double vision, the fact that my blood pressure was remaining stable and I wasn’t ridiculously photosensitive like I would be with a migraine probably meant this was something new. I couldn’t, we also discovered, track her fingers without pain and a blurry line following the two (er, one-that-I-saw-two-of) fingers followed behind the motion. That inability to track plus the double vision perplexed her and the other doctor she brought in to help consult, and ultimately referred me to neuro-ophthalmology for the next day. If specialists are like Pokemon, I’m very close to catching them all.
Because bureaucracies are ridiculous, the referral inevitably got lost and we spent an entire day on Wednesday trying to track down the referral and actually get the appointment. Or, rather, my Partner spent an entire day. I spent the entire day with my migraine mask over my eyes because the doctor had literally sent me home with the instructions to “cover your eyes and don’t look at anything to rest your eyes and eye muscles” until I got in to see a doctor.
Anyone who wants to claim they know how to eat “mindfully” has nothing on me anymore. There is nothing more mindful than spending a day first trying to eat with perfect double vision, which also is making you nauseous, and then finally giving up and deciding to put the dark mask on and just eat by sense alone. I did listen to an audiobook, my first time doing so. On the one hand, the narration speed felt impossibly slow compared to my ADHD brain and my usual reading rate. I’m usually the all-or-none kind who can either not read at all if my brain fog is too bad or can hyperfocus and finish in a day. On the other hand, audiobooks have a certain soothing meditative quality that is kind of appealing. I think I might try listening to audiobooks at work when I return instead of music as a way to drown out my bully-of-a-boss. (My office is sufficiently close to his I can literally hear him screaming through the walls, which is really bad for my mental health.)
After another day of becoming increasingly anxious because my first response to doctors who don’t have ready answers or the grinding wheels of bureaucracy is usually to just read a ton of medical journals until finally, I end up having figured out what is going on before I actually get to the specialist anyway, I got to my appointment. Ehlers-Danlos was still to blame, but in a new and different way from my prior symptoms.
My eyes had decided to “decompensate” and just stop tracking well together. Both the eye muscles and the eyes themselves are made up of collagen. They can get loose and out-of-focus just like the joints. The brain is reasonably good at working out slightly misaligned images from weak eyes or eye muscles (especially with a mild prism in the prescription, which I already had in my glasses), but the offset had just become too much. My brain had given up trying to make sense of the dichotomous signals it was receiving. I no longer just need mild prism in my glasses. I need strong enough prism that my Partner swears he can literally feel his eyes being pulled in a different direction when he looks through them. The ophthalmologist gave me these plastic stick-on prism things to put over my normal glasses and told me to wear them for a few weeks to make sure it a) fixes the problem and b) doesn’t create other side effects like increased migraines. If it works, I will have an unpleasantly high bill but we can grind the new prism into a new set of glasses so I don’t see the slight plastic crinkling and lines from the temporary stuff.
It does seem to have fixed the double vision so far, though this blog post is the first serious attempt I’ve made to do anything functional with my eyesight this week. Apologies in advance if this post is even more all-over-the-place than usual. I’m writing stream-of-consciousness and not forcing myself to do even cursory editing. I’m trying not to overly push the limits of my already-overworked eyes as I adjust to my new scary-strong prism and recuperate from the exhausted “decompensation” that caused the problem in the first place. Thanks to this week’s adventures in zebra land, I have absolutely no idea what anyone has written on their own blogs for over a week, and I will probably be gentle about returning to reading the old-fashioned way.
Ehlers-Danlos just makes me eye rate – er irate – sometimes.
Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.