#doctorsareSTILLdickheads

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 🙄

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ME Awareness Month

May is #MEawareness month.

ME is a neurological disease which affects every part of the body – cognitive, cardiovascular, respiratory, gastrointestinal. It is not ‘CFS’.

We need more awareness of this illness as, if sufferers are told by medical professionals/family/friends to push through their symptoms in the early days, they can end up EXTREMELY sick – this is exactly what happened to me.

I began experiencing symptoms in 2015; my symptoms were brushed off & I was advised by professionals to ‘continue exercising’. In the space of 1yr I went from being able to walk around the house, help with housework, & spend hours walking outside the house EVERY DAY – to being 95% housebound, not being able to be around any light, having seizures, & not being able to walk without extreme cardiac symptoms.
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Over the past few years it has been a steep learning curve. I’ve been bullied, belittled & ignored by the NHS, so have had to work out for myself what makes me worse. I’m 90% bedbound, struggle severely with cognitive issues, have 24/7 pain, & have severe orthostatic intolerance – sitting up leaves me unable to think & having seizures; standing results in my heart rate increasing by 50-100+bpm. I have periods where parts of my body become paralyzed; I lose my taste for days at a time; my brain is fuddled & I talk absolute nonsense.

I battle intense symptoms 24/7, but these are much worse following activity. I’m unable to bathe alone, cook, clean, do much of anything. I’m very much still grieving for the life I had, & still getting used to a life of so little.

I understand I must not push myself. Overdoing it will result in my condition deteriorating, & if this continues, my ME could end up fatal. This is terrifying.

I’ve lost so much to ME. My health, my life, my hobbies – integral parts of who I am, what makes me me! I’m unable to do anything for myself. My partner has to do everything. I experience abuse & stigma from every dr I see; myself & partner are dealing with this terrifying ordeal entirely alone, & it’s awful.

ME is much more than feeling tired. It’s not a joke, it’s not a mental illness, it’s not laziness. GET could kill us & CBT will do nothing for our physical symptoms.

We need more awareness & better (ANY!) education for medical professionals 🙄
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The book in these photos is “Caring for an ME patient” by Jodi Bassett, who had severe ME & sadly passed because of it. It is an amazing book & I highly recommend it.

Autism passport: done!!

After, I think, 2 months of constant effort…the autism passport is finally done. Phew.

Now I have another weapon to fight shitty drs & handle medical appts!Excuse me whilst I hide in a dark room for the next week… 😂

This is a local NHS scheme, & the passport actually instructs drs during any hospital visit that they must print out, read, & gang the passport on my bed. Any staff interacting with me are supposed to read it. This should hopefully be an awesome tool at stopping medical staff being dickheads, & limiting trauma.

Autism passport aggro

If I had the energy, I’d be banging my head against the wall rn 😂

So there’s a really cool local NHS scheme where autistic patients get a passport to fill in. This gets logged on your file, you get a copy too, & at hospital appts or visits, staff are asked to print the passport out, read it, & hang it on end of your bed. The passport gives staff crucial information about how your autism effects you (things you like, things you don’t like, sensory issues), & also has blocks to tell them about other health issues you have too.

For me, this will be an extremely helpful safety net, as at every hospital visit I’ve had to deal with abusive or bullying doctors.

Needless to say I want this tool asap, but unfortunately because it’s produced by the NHS & I guess a new scheme, it’s faulty af. I’ve tried filling this beast in eight times now, only for it to fuck up each and every one of them 😂

Text disappearing, icons disappearing, images disappearing, text changing size, images & text boxes overlapping each other. Like, just a ridiculous number of technical issues.

I thought I’d finally got it working today. But nope, nope, so much nope 😂

The sent file looked great. We re-downloaded it to check it was okay, & this is what we got instead!

Uuuugh.

If it worked it would be FANTASTIC. But 🙄

We’ve asked the guy for help for the third time, hopefully he’ll respond & we can get it sorted… 😅

I wasn’t out done asap as when I go see the GP about my hypermobile joints & rheumatoid arthritis, I wasn’t to hand it over to them. It’s been a loooong process 😂

But…something GOOD happened!!!

For years, I have struggled attending medical appts due to medical trauma/medical PTSD.

I have had more traumatic experiences with the NHS than I can count. From professionals telling me when I was 19 & having my first psychotic break that I could only be hallucinating due to taking recreational drugs, to GPs instantly blaming my mental health for my seizures & tachycardia…it’s been a rough ride, & one I’m paying for dearly.

Appts now trigger crippling anxiety/panic weeks in advance, resulting missed sleep &, ultimately, bipolar episodes. Thanks to dozens of negligent doctors, medical appts are now dangerous to my health 😅

Well, for the last 6 months my partner, Lyle, has been desperately hunting for a way to manage medical appts. Initially I was looking, but I found it too stressful as it meant I was thinking about the NHS 24/7, & I also found no solutions.

We contacted an advocacy group (who said they could help with a complaint, but couldn’t help in trying to prevent anything bad from happening), Lyle phoned 111 four separate times (they’ve recently started pushing the fact that they’re an advice line, so) – not once did they call him back when they said they would, & finally he tried CAB to no avail.

In desperation he rang PALS today. I say in desperation as we’ve had maybe half a dozen dealings with them; they’ve never been helpful & last time didn’t even bother responding 😂

BUT! We got incredibly lucky, & the woman Lyle spoke with today was beyond incredible.

Lyle explained our predicament. Almost immediately the PALS member asked what my gender was, as she’d noted Lyle was using they/them pronouns. Considering most NHS staff I’ve dealt with aren’t aware AT ALL of transgender issues, the fact she’d noted this & was then very familiar with nonbinary folk, was fantastic. She then went on to say (without Lyle asking for this at all) that she would put a note on the system that I was nonbinary, & that I may need support for this. She also said she’ll help us formulate a plan to help us manage the constant misgendering from doctors, & a way to report them if they don’t correct themselves.

I was so happy I cried 🙂

Next, she asked Lyle if I had ever been diagnosed with autism. Again, Lyle hadn’t mentioned the fact that we (& my parents) are certain I’m autistic – she picked that up from Lyle describing my difficulty with appts!!

After listening to Lyle talk in more detail, she said that she will add a note on my file saying that it’s highly expected I’m autistic, & that it would be preferred if we could have doctors experienced with ASD. She is also referring us to all the services I would have been directed to if I had a formal autism diagnosis – cue more happy, grateful tears from me 😂

Finally, she said medical trauma is a complex issue, but she will help us access support & formulate a plan to cope, & be able to attend appts again!

So…basically it was the best thing ever, & I’m actually feeling hopeful that I may be able to access diagnoses/treatment soon!!! 😭