Rachel

Slightly muzzy, slightly forgetful, somewhat alternative, somewhat political, chronically ill & disabled, and always totally me ... (cis, ace-het, She/her)

[Rachel @JustRachel75]

#NEISVoid #ChronicIllness #ChronicLife And there's the 4th new diagnosis #IBS in 2yr *sigh* Swear I'm falling apart faster all the time #MECFS #Fibromyalgia #Anxiety #Depression (wouldn't you?) #PCOS #Hypermobility #Autism #PTSD #Gallstones #Type2Diabetes #HidradenitisSuppurativa

[Rachel @JustRachel75]

@naomicfisher First year at High ('86), French teacher told my parents that he'd thought I was going to be trouble/poor student because I didn't make eye contact, barely spoke and slouched, so was surprised when I got top marks. Slouched because of hypermobility, the rest because of autism.

[Rachel @JustRachel75]

@ElissaNoves Every SEND parent knows that without the label, the help will not be there despite the actual needs of the child. It affects them through adulthood too, as two of my SEND kids are finding in their 20s because of 'labels' not confirmed in education (dyslexia & AuDHD respectively).

[Rachel @JustRachel75]

@McJesse Never felt unsafe or got groped when in or near the pit with the big scary-looking guys - had my ass grabbed/'accidentaly' brushed against though when further back near the 'normies' who'd also gone to the gigs *smh* Mosh pit guys are usually the gentlemen of the crowd.

[Rachel @JustRachel75]

@BookLadyKaty Graphic novels were the only way to get my eldest to happily read. The yr6 teacher for all 3 kids was very much a 'that book's too young/easy' person, only for them to get to high school and find much of what they'd chosen in yr6 on the yr9, let alone yr7/8, rec. reading lists.

[Rachel @JustRachel75]

@DudespostingWs When I was at secondary school in the 80s, the Van De Graaf machine would be wheeled out about once a year in science - I personally think it was when the teachers felt they needed some payback, as they usually had us run this 'experiment' more than once lol

[shelby @seashell_b]

every time someone says “you’ll figure it out, you always do :)” to me the rage burns hotter in my chest. do you know how much work goes into figuring it out???? do you know how tired I am of ALWAYS having to figure it out by myself???

[Eli McCann @EliMcCann]

A quick reminder to everyone before Halloween: if someone shows up to your house in costume, it doesn't matter how old you think they are, give them candy. Our planet needs more joy, and we need to give kids smiles and sugar for participating in our silly traditions.

[Rachel @JustRachel75]

Just got my #ESA to #UC migration letter - whilst in the middle of a #PIP review *sigh* Welcome to interesting times. #PWME #ChronicIllness

[Rachel @JustRachel75]

@adamfare1996 I have a neoprene sleeve/holder that has a small strap handle over the top - my grip isn't safe for carrying liquids, so this hangs off my fingers/walking stick handle until I want to drink from it - no spills yet. Search ebay etc and you should find plenty in all sizes.

[Kelly @broadwaybabyto]

Every day I become more convinced that the blame laid on disabled people for not “getting better” stems from fear.

Its easier to believe we’re not trying hard enough - or not taking care of ourselves - than to recognize health is NOT a guarantee. You can lose it at ANY time

[Rachel @JustRachel75]

@useless_priest Mum had relapsing-remitting MS, and when my (then undiagnosed) ME went from mild to moderate, even the docs initially thought it was MS as we effectively looked the same (tests said no, hence my ME dx). I suspect there is a common root, esp now with viral/MS link.

[👻ghost of submersibles ablaze🌊 @MECFScomrade]

This is why the narrative we’re “scared” of exertion infuriates ME patients. It takes incredible discipline and restraint to keep yourself from living life. That’s literally all we want. I have an insatiable lust for life that leaves me grief-stricken daily

[Non-Ironically T.V.'s B. Dave Walters - EVERYWHERE @BDaveWalters]

Relax. Luxuriate rebelliously.

[Rachel @JustRachel75]

@naomicfisher Youngest is chronically ill. Attendance was never great, plummeting at High School (additional pressures). One time that makes them (darkly) chuckle is when they got an 'approved attendance' award - and weren't there to accept it as the attendance effort had crashed them again.

[Rachel @JustRachel75]

@SpoonieTrees Ah, I went into autopilot *lol* Well, the summer stuff only moved to a drawer across the room rather than next to the bed, so can always grab some if needed :) Got to rethink a suitcase again now though - supposed to be overnighting next week and thought I'd cracked it *smh*

[Rachel @JustRachel75]

The heating (set to 19.5 degrees) has automatically kicked in at least twice in the last 24 hrs, and it felt chilly, so Summer is over. Following #pwME priorities, I've swapped my PJs drawer from summer to winter and will do the rest of the wardrobe as energy allows.

[Rachel @JustRachel75]

@lizsteelpt2 @75ThunderRoad I went through a very similar situation. The stress caused by school/soc services during that time made my already struggling chronically ill child (and myself) even more ill. I wish I'd been able to home school them - they still suffer from the effects of the system years later.

[Rachel @JustRachel75]

@mightbeautistic I'm images rather than full pictures generally. I can date family photos by something in the background/clothing, but possibly not recognise or be able to describe the people. I can build/manipulate shapes/nets/plans in my mind, but not create a detailed image of a complete room.

[Rachel @JustRachel75]

@adamfare1996 If the cold 'gets in' to me, no amount of layering will warm me, I need physical heat (I often have to use an electric blanket even in the summer if chilled). Also, layering *hurts* my joints, I can't wear heavy/thick clothing, I just don't have the power in my legs/arms.