In case anyone is wondering what my day would look like summed up in a photo 🙃😂
I’ve been in so much pain all day. My exhaustion is so bad I’ve spent about 6hrs total today lying in bed, lights off, eyes closed, doing nothing but letting my body rest. The rest of the time I’ve been cuddling my partner or reading.
NHS update: so we’ve been trying to get help for a particular health condition, myalgic encephalomyelitis, since January, only to be met with a bullying, condescending dr & the need for multiple complaints.
For the last 3 months my partner had been talking with the head nurse & she has been bringing my case up during weekly meetings, finding drs that would be willing to try help, & read the medical info we’ve gathered regarding my condition. She’s made promising noises week after week, but there’s been no progress, every week we call & are told the same thing – “phone back next week”.
About a month ago we spoke with a GP who wanted to help but “didn’t know anything” about my condition.
THAT IS HE PROBLEM, NONE OF YOU DO! THAT’S WHY WE’VE COLLECTED ALL THE MEDICAL INFO YOU NEED – THERE IS NO SPECIALIST NEARBY, THE DISGUSTING DR WE SAW IN JANUARY FINALLY CHECKED FOR THAT (then gave us a number for CBT – for a serious disabling physical condition – & shrugged his shoulders 🙄) WE HAVE NO OTHER OPTION, WE JUST NEED A GOOD FUCKING GP!!!
So. That GP said she would get the head GP to call us, hoping he would know more (he won’t) or that he will be willing to put in more effort to learn & help (he probably won’t 😂).
We had a phone appt scheduled several weeks from then, which was last Thursday. Guess what? He didn’t ring 🙄
When we phoned the surgery on Monday (giving him Friday in case he’d ring a day late), the receptionist said she didn’t know why the GP hasn’t rung us. She said he would call us today.
He didn’t ring.
So now my partner’s gonna have to make a physical appt (which is usually a months’ wait, but maybe he can argue it down as they’ve been fucking us around since January) & go in himself.
I am beyond sick of this stupid fucking cat-and-mouse BS now. This is how every interaction with the NHS goes; constant fuck-ups, no apology, no help.
I JUST NEED HELP!!!
I’ve been screaming this for 2yrs now, & all I’ve seen is #doctorsaredickheads who refuse to listen (& immediately blame my very obvious physical issues on my MH), & waiting lists that last years.
I’m still waiting to check if my seizures are epileptic. I first tried to get help for them way over 2yrs ago 🙃 They were repeatedly blamed on my MH by GPs who knew nothing about seizures. Then I saw a fantastic neurologist, who couldn’t believe my treatment & wrote that my seizures seem to be complex partial seizures – she wanted an EEG, a 24hr ambulatory EEG, & me started on anti-seizure medication. But she left, & now I’ve just been lost on the waiting lists, with a few fuck-ups along the way.
I know now that my seizures are almost definitely *not* epileptic, so I’m not as scared as I used to be. I know they’re physiologic & I know what triggers them (ME, dysautonomia, spine issues) – but back in 2017 I hadn’t a clue, & I was terrified. Would I get brain damage from them, would they develop into tonic clonic seizures, were they caused by a tumour?! I lived in such fear, & along with not knowing that I had ME I was unknowingly making myself sicker.
Imagine if I hadn’t found answers by myself along the way. I would still be living with that fear, with zero medical support, & having 25+ seizures a day 🙄