Ugh lol we’re too responsible
Hi. I have fibro, hEDS, migraine…and now also myositis apparently idk…? I come back to this app every once in a while when things get really bad, and such a time is now.
Does anyone ever feel like dealing with a chronic illness is like the self-control Olympics? So two months ago my disability benefits got cut off adversely and now my basement tenant is failing to pay their rent. This all started happening right after I had reached a point of emotional exhaustion (compassion fatigue…? towards myself?) where I just wanted to take a break from trying to successfully diagnose/treat my symptoms (ever been there? ever been to so many doctor’s appointments in a row that just the act of getting there and sitting through the appt and getting back home throws you into a *physical* pain flare? yeah…). So I was already kinda over everything…
Here’s what I’m feeling (aside from lots of symptoms lol). If we never learned how to ask for help in the right way, we would get ignored or trampled over by other people, even when they have the best of intentions (some don’t). And learning how to ask for help is an important life skill for everyone to learn, but having severe chronic health issues puts the development of that skill onto a sink-or-swim, sometimes literally life-or-death trajectory. And that’s EXHAUSTING. The day I got my denial letter I had a drs appt in the morning that I almost dIdN’t gO tO because I had slept so poorly, it was a long commute to get there, and I was feeling so jaded about anyone having anything useful to offer me that I hadn’t tried before. But then sh*t happens like my life exploding and I’m reminded that I have absolutely no leeway, no leeway whatsoever, no room for other aspects of my life to go wonky (don’t even get me started on my family ugh lol) because 100% of my time and energy is focused on managing—*managing*, not treating—my symptoms. And I need something to at least make a dent in that 100%. It can’t just be all pacing and stress management. Not that those things aren’t important, but I’m talking about very specific (probably biomedical) treament that directly targets an identified pathology and leads to significant improvement. Would be nice. Kinda need it.
Bc all the other stress that’s going on in my life right now goes away if my illness does. Or almost all of the stress would, anyway. But as it is, I can’t go for a run to blow off steam, I can’t blare music in my car or binge watch TV shows because of headaches, I cancelled a trip to Florida because I already wasn’t feeling well and now there’s financial concerns…so no vacation for me.
This morning I was feeling all zen and happy like all I need is love and the sunshine to make me happy but now my mood has swung and I’m not the greatest. I’m feeling like the reason why I have to be so serious and responsible all the time is because I live in a world where scientific understanding is stuck in the 70s and nobody really has any compassion for anybody besides themselves.
I want to believe that’s not entirely true. In fact, I know isn’t, but I’m a little stressed out rn, and my heart is breaking. 💔
If you’ve read this far, thanks for reading, and I hope you are feeling safe and loved and relatively comfortable and low pain. Pic of my little bedroom haven for tax. ❤️xoxox