I will be honest. I'm having a tough day today.

It isn't just the pain, though that's there. It isn't just the collection of "other" symptoms, though those are there too. (Seriously, where do these fevers come from?!) It isn't just the lag from yesterday's 4-hour-both-way rides to see my geneticist, though that's definitely there. It's just... all of it. All of it and the mental checklist and morass of file folders for undone tasks that's taking over my life and never seems to get any smaller. I have to do ______ for disability process, I have to do ____ and _____ so I can continue to receive basic medical care, and oh yeah, I have to evaluate whether I'm just not trying hard enough and that's why I'm gaining weight that I can't lose and why I'm taking money at exorbitant rates from my dad who totally deserves better and why I've doomed my husband to a life of "in sickness" with no "in health" and why I quit school and work and maybe I'm just not really trying, you know, to make the most of my days at home? Maybe I really am just lazy, and being sick is a convenient excuse to give up altogether? Maybe I'm not really that sick and I'm tricking myself into feeling more ill than I am?

I think anyone with a serious chronic illness will ask these questions of themselves at some point, especially if they've given up anything significant because of it, and especially if they're still young. I'm just having a hard time with staring down the years and wondering if I'm going to continue to decline or not. I'm doing my best not to, I really am. Sometimes, especially when you don't see any improvement, it's hard to keep at it, to take the meds, to swallow the vitamins, to do the physical therapy, to eat healthy, to look on the bright side. I'm just tired. I'm so tired, you know?

Anyway, the trip to Tucson yesterday was to see my geneticist, the one who actually diagnosed me with EDS. She had gone to a conference last month, and I was eager to hear if she had any insights for me that were new, and eager to discuss some research that I'd been doing into various co-morbid diseases and syndromes and possible other diseases that could be aggravating the EDS. (For anyone who is new and doesn't know what EDS or Ehlers-Danlos Syndrome is, the Ehlers-Danlos society has a nice, concise run-down of the various "types" found in the syndrome family. I fall very neatly into the Hypermobile type of EDS.) Unfortunately, there are no miracle cures as of yet, but she did have some interesting observations on preventative care.

The conversation we had was wonderful-- I enjoy a good discussion peppered with medical terms :)-- and I came away with a clearer understanding of what symptoms lie in the domain of the EDS, what symptoms come with comorbid diseases or syndromes, and what symptoms are the completely unusual outliers that I can focus on in a bid to find more answers about what's broken inside of me. I have a few interesting leads, but I don't really want to discuss them yet, not without further research. Something I am going to try out is kenesio tape, which I'm not really familiar with but she says is great for EDS because it supports the joints and provides compression to aid with blood flow. I've heard of it before, but not really looked into it because I'm allergic to adhesives, but I think I can make it work anyway, maybe with something like "vet tape" that doesn't have any glue. The idea is to be more proactive with splints and braces, to avoid injury before it happens instead of treating it afterward, and that's a new approach for me. I guess I hadn't really accepted my diagnosis yet, kind of hoping that it was all a big mistake or something... but if I'm being proactive about it, then that means that I accept that it's a thing, and that makes it real. It's not like I haven't done that before, but the funny thing about "chronic" is that it drags on through years and years and you have to face things more than once. I've read that chronic illness is cyclical, and I believe that the acceptance is cyclical too. Or maybe it's just a process. Either way, it just feels big and scary and I don't wanna! But on the other hand, if it can make me feel even a bit better, it's totally worth it, cause that means that I can apply that energy that was tied up in feeling crappy and making myself power through so much unpleasantness and I can use it for something productive, even if it's just having a friend over for tea.

Well, whatever. All I can do is keep trying, right? Plodding forward, one millimeter at a time, that's me. Maybe this plodding will lead me forward into a better place. I can only hope so.

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