Low key a support diary for figuring out life with my aceness and now chronic illnesses and what not. Whenever it helps me, I throw what writhes in my mind to over here.
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Love referring to my disabilities as “the curse” and my symptoms as “the demons.”
Sorry, I can’t come, the demons (being an eepy little guy) require my attention (nap time) on account of the curse. (chronic fatigue)
Yeah, no, the demons (hypermobile ankles) decreed that I cannot wear heels anymore, on account of the curse. (connective tissue disorder)
I can’t stand up to fast or the demons (heart rate spike) will steal my vision. On account of the curse. (POTS)
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"you're so strong" "you're so resilient" "you're so brave" what if I don't want to be? what if I want to break down and cry? why do I have to be strong?
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As a chronically ill person, I’m not resting because I want to. I’m resting to avoid getting worse and because my body has given me no choice.
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Fatigue feels like you have sandbags tied to your feet while trying to walk. It feels like you haven’t slept in weeks. It feels like gravity is pulling you down. It feels like cotton balls are in your head, clouding everything.
Fatigue is NOT the equivalent to being tired.
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i’m not aromantic but i believe in their beliefs
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Also I love having my friend as my roomate. It's SO much easier to be happy and motivated to do things when she's around - even just my own things in my own room. And then we also have really cozy movie night, and she talks exitedly about twenty-eleven different topics at dinner or breakfast or in the midst of gaming.
Do yeah, I enat to find a way and time to let her know in actual words how happy I am about this. It's always a risk, tyeing your daily life together with someone elses, but it was a calculated risk worth trying out.
I hope she is happy about this decision of ours too (I think she is)
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It's easy to need the bad times in writing, and equally easy to do the good times in silence that become oblivion (for me at least).
But I want to acknowledge and remember the good swings too, so here goes one:
The pain has been mostly absent the past month or little more! So I've taken the opportunity to do a few fun things (visiting friend, leather sewing, writing), and also a few restful fun things (knitting! Mending!), and also a few tick-of-the-list chores (medical appointments, vaccuming, day on the town shopping).
All the whilst having extra busy regular weeks and digging in to the heavier chores at work.
Maybe I am making some right priority decisions!! Maybe the pain-management course is being helpful! Guaranteed the support garments are helping reduce the stress on my body!!!! 💚 Medical corset my beloved 💚 Also using the bike to carry everything must pay off!
I have pushed a little too hard, or the wildly shifting temperaturen outside make me more sensitive again so the pain is increasing small thing by small thing. But so far I have had a really good swing, and it also feels like I have appreciated it and made use of it. So the prospect of it turning bad again is maybe less heavy, because I am getting things done and being happy ✨
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