Definitely has not yet properly sunk in that - if how I am right now is roughly what my baseline level of energy/PEM/ pain/other sx/digestion should be - then...basically I never properly recovered from that #crohns flare in 2014 that my now-former gastro said wasn’t a flare. 🥺
(I know it’s partly the #corticosteroids. I KNOW. But everyone at the hospital was keen to reassure me that it isn’t ONLY the steroids, & the difference in my previously-unnoticed levels of gut pain & the truly ridiculous levels of malabsorption alone is... kind of staggering.)
I am SO MUCH LESS #ActuallyAutistic-mode anxious & so much more functional than usual &I'm trying not to have an emotional explosion over it bc I'd been like ~that~ for sooo long by now I think I’d almost forgotten that I haven't actually been like that my entire adult life! 🤯😭
I've just promptly listened to voicemail, returned a call & set up an appt for Thurs w my sleep/resp med doc, and WASN’T EVEN STRESSED about the voicemail and phone. 🤔😮😲 #healthwork #CAPD #ActuallyAutistic #NEISvoid #fatigue #autoimmunity #EDS #chronicillness #POTS
While I was in hospital dealing with the constant WALL OF NOISE all day, every day, I got pissed at not being able to supply docs & pharms w nec info & on a whim called the
GP practice I attended fr 1999-?2008 to ask them to fwd relevant records (which they DID).
I picked up my phone every time I noticed it ringing while I was in hospital. (Almost every time the call was coming from ~inside the hospital~, lol.) I called Steve multiple times rather than defaulting to texting, even when physically exhausted & challenged by noise pollution.
& now I’ve done bunch of #healthwork I haven’t been able to do consistently or w/o massive anxiety in yrs &barely even thought abt it. Just: “Right! This CLEARLY isn’t working; I’m going to try this instead!”. I asserted appropriate boundaries both in the medium-term & real-time.
I'm actually inspired in both happy zingy brain ways AND actual-concrete-plan ways to work on my thesis, and I was happy enough for Steve to throw away some no-longer-needed stuff while I was away, and it all just... is Not Hard?
Wtf, is this what it's like to have actual... resources and reserves? Maybe this is more like how life used to be during the in-between "good" times up until c2014?!? 😳🙃😆😭

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More from @monika_dryburgh

7 Oct
Looking forward to hearing from John Byron in today’s HPS seminar on “Critical Friends: insights for science from the humanities”.
Noticed during last year’s metascience conference an emerging narrative of anxiety around critique of published results/reproducibility in science.
John found this anxiety narrative quite jarring, coming as he does from humanities work in e.g. Lit & cinema studies, where critique is central to methodology!
Read 26 tweets
6 Oct
Thinking about the time, c15 years ago, in the middle of undergrad, when the genuinely-helpful psychologist I was seeing through the uni counselling service decided (entirely appropriately & ethically, imho) that I was officially Too Complex for her to competently help...
given the limitations of the situation: the limitations of her own training & expertise, the maximum of 6 counselling sessions available to us per semester, my worsening & multiplying complex physical health problems (very incompletely-diagnosed)...
the impact of recurrent bouts of anaemia as well as immunosuppressant side-effects on my constant fatigue, the interactions between my increasing disability & pain & concomitant sleep issues & my mental health, fatigue & pain levels...
Read 40 tweets
6 Oct
@KylenH @bennessb Yes, I think so. I don’t have the super-soft/delicate/stretchy skin of EDS classic type,, & although I do get atopic dermatitis it seems to be different to the irritation & peeling skin I get from tape. I also get a particular (&, I think, related) skin reaction to anything that
@KylenH @bennessb rubs, including my otherwise-awesome thumb splints. Alsoalso very prone to skin tags in high-friction areas, fwiw. I don’t seem to have full-on #MCAS on anything, but I do wonder if #MastCellsGoneWild could be implicated somehow,
@KylenH @bennessb esp given my recent experiences of simultaneous #multisystemic #autoimmune #chronicillness affecting GI system (#IBD: #crohns but also #GORD), skin (#PyoG), joints (#AnkSpond/#spondylarthropathy/ seronegative #arthritis) & prob aspects of the respiratory system
Read 9 tweets
6 Oct
Somehow managed to spend about 3 hours organising my meds today (I guess mostly bc i kept getting distracted, bc I only had to do 3 days of the week & it wasn’t even for the first time!). Got through almost all the dishes between the two of us, & managed a shower before attending
the virtual launch of Jacinta Parsons’s new book, “Unseen”, on her life with #chronicillness (#crohns, no less). Managed to not just stay awake this time, but also to livetweet much of it, which was fun. After that there were no more excuses to put off doing the dressing change
for my #PyoG leg ulcer, so we spent a bunch of time going over our written procedure to make sure we had all the materials & steps included in the correct order, & then did that. Alas, it had been so long since my previous Tramadol it had already worn off, which was ... A Mistake
Read 9 tweets
6 Oct
Listening to Christine Gordon of @ReadingsBooks launch @Jacinta_Parsons’s book “Unseen” - a book not just about the events of enduring & #chronicillness but also about its #complexity. JP hopes that she has captured something of the nuance & diversity of the #LivedExperience...
@Jacinta_Parsons says the path to dx is an underappreciated & often lengthy aspect of the experience of chronic illness - it’s not necessarily an easy path to getting a diagnosis & treatment.
When the change in your health is incremental it can take years from the onset of symptoms to eventual diagnosis. I am fascinated w the transformative power of the diagnostic moment #crohns #socdx
Read 35 tweets
5 Oct
Can it be bedtime yet? 😒😞😴 (No, no it cannot; I have with-food drugs to take and homemade pizza to metaphorically oversee the assembly of — read: tell steve what topics *toppings to put on my pizza while conked out in the living room. Mmm, pizzatopics! God, I am tired.
mmmmmphff, too tired. *shuffles off the kitchen to retrieve yogurt and with-food drugs*
Sooo, *prob* a good thing I have an appt Thurs w my sleep/resp dr, given that last night I slept fr 2135-2245, 2250-0200, 0215-0420, 0625-0705, 0710-0735, & 0738-0748. Yeesh, brain, WHY?! This was WITH the help of melatonin, suvorexant, evening Tramadol dose &blue light-blockers.
Read 4 tweets

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