#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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Ugh, life

Tomorrow is Lyle’s actual birthday & I couldn’t be happier we celebrated (repeatedly) earlier, as I am just not in a good place.

I’m hypomanic, & I’m so frustrated with being stuck in bed all the time. I woke up from a big nap today thinking it was morning, & my brain immediately jumped to “I’M LEAVING THE HOUSE TODAY!!” 🙄

Like, no. You can’t, shut up!

Yesterday despite it being a rest day I crashed so bad in the evening, & couldn’t open/control my eyes properly, move, or speak – for several hours I was too exhausted to do anything. I absolutely hate ME, but hypomania in addition is literally the worst…I’ve done really well this month, I’ve only left the house five times, & I don’t want hypomania to ruin that & cause a potentially permanent relapse 😭

Tomorrow Lyle’s going out for a meal with some of his family, & I’m staying home…I’m so jealous 🙄 Hopefully I’ll just be able to sleep.

I feel like soon, life will improve so much – thanks to the OT & grant scheme we’re getting a stairlift (30th of this month), wet room, hand rail, & with savings we recently bought a power pack for my ♿. I’ll almost definitely be able to do more overall with these adaptations to the house, especially as one of the smallest activities that triggers the most fallout is climbing the stairs 2x a day.

However that doesn’t really help when I’m currently irritated af, just want to GET OUT, but my body is incredibly physically exhausted… 😕

Sad days = pet pics

I’ve had a really difficult time recently, both physically & mentally.

I’m hugely overwhelmed & struggling to manage my autistic meltdowns without being able to hike anymore. Being stuck inside takes a toll on me mentally, too.

I can get out in my wheelchair a few times a week, but it isn’t the same…all the decent walks are inaccessible, which means I have to stay by/on busy roads (leading to sensory overload & pushing me closer to meltdown); I also really miss the exercise part of hiking, I can’t even self propel. Hiking has been my entire coping mechanism since I was less than 10 years old, so it is a huge loss. They were *the* way I kept myself in check; the way I de-stressed, avoided meltdowns, enjoyed life. It sucks that they’re entirely gone now 😞

Yesterday I had 3 huge meltdowns. It was extremely physically exhausting. I am constantly on the precipice of an autistic meltdown atm as I’m so overwhelmed & have no way to really unwind…it’s very hard being constantly on edge, meltdowns take a lot out of me (& I don’t have much energy because of ME!!), and I feel extreme guilt afterwards for my behaviour during a meltdown.

It’s not nice for me or my partner. Yesterday I was screaming, crying hysterically, I left my wheelchair & collapsed with seizures…afterwards on our way home I had a resulting ME crazy (seizures, freezing cold, too exhausted to speak).

Yesterday was an absolute nightmare.

Life in general is just…difficult these days, too. Dealing with the constant loss & struggle is hell, then you factor in the physical difficulties & pain and it’s just…shit 😂

Take today for example, I couldn’t go up to the bathroom until after midnight due to crippling exhaustion and seizures/being unable to breathe when I moved. Like, that is AWFUL 😭

My exhaustion is extreme, I can’t even sit up without seizing & being so foggy I can’t think/move…on the positive we’ll be getting our stairlift put in within the next few months, hopefully. It will be so nice to be able to go to the toilet when I need to! But I still grieve for the fact that I need a stairlift…it’s such a roller coaster.

Whilst I can’t get out & am so stressed, I’ve been spending a lot of time with my partner & pets. Here are some cute photos of my fur kids!

The piggles got an extension added to their cage today, a 3ft dog crate tacked onto the end. They’re zooming about so happily 😊

I’m ANGRY

I don’t think I’ll ever get over the fact that thanks to the NHS’ incompetence, my illness is almost definitely much more severe than it would have been, had they caught it earlier.

One of the worst things you can tell someone in the early stages of myalgic encephalomyelitis is to ‘push through it’ or to exercise. I was told this by everrrryyyyyooooonnnneee!

As recently as one year ago, I was fighting against my body & still exercising more than I ever should have. As a result I was dangerously ill. I was experiencing 30+ seizures a day, at home I was unable to leave bed, & I was in huge amounts of pain. Not to mention the constant, debilitating fatigue!

It took me over 6 months to start connecting the dots. At first I realised I had dysautonomia, which is easy to measure & notice yourself (because there was no chance in hell the NHS would take note & blame anything but my mental health 🙄).

However I knew it wasn’t ‘just’ that, as I already had experience that exercise made me much worse. My level of ability (or lack thereof…) & the intensity of my fatigue also sat very different to all the POTS peeps I read about.

Discovering ME was like a bulb going off inside both me & my partner’s heads!

It explained my need to very slowly pace my days. It explained why REST was crucial. It explained why I needed to avoid both physically & mentally taxing activities. It explained the pain, the fatigue, AND the POTS (as they’re co-morbid conditions).

Through research I learnt that pushing myself to exercise (over an hour daily) in the early months of my illness, was possibly the worst thing I could have done, & has almost definitely left me with a more severe condition. It explained why my seizures used to be so excruciatingly high, why I had no memory, no energy, but a lot of pain.

I’m furious that had it not been for the NHS missing everything, & doling out standard, dangerous, advice…I might not be bedbound 97% of the time now. I might not need to rely on a wheelchair anytime I leave the house. I might be able to get to the toilet unassisted. I might be able to shower myself, or cook for myself.

I might have some semblance of a life.

As it is I’m fighting intense symptoms daily. I spend most days in bed, with the light dimmed, struggling to find the energy to eat or read. If I make it out the house twice in one week, I’m lucky. I rely on my partner for EVERYTHING.

What’s worse – I’m one of the lucky ones.

There are people with ME that can *never* leave bed, that can’t stand *any* light or noise, & that can’t eat.

But the way the NHS handles this condition is truly despicable. People are told it’s in their head, that they’re healthy…when it’s finally unavoidable, & patients are correctly diagnosed, we’re then forced into treatments that DAMAGE US FURTHER; or we’re ignored completely & told there’s nothing that can be done…

It’s a shambles, & it’s scary.

And I’m so angry that my life is how it is, & the NHS have a) done nothing, & b) ignored me when I initially approached them for help.

Signing off feeling like utter crap ~

#DoctorsAreDickheads

This is a hashtag currently trending on Twitter, & it’s a vitally important one.

I’m too fatigued to write out much about it, but here are some screenshots.

And here’s my story

And here’s some ridiculous individual who totally missed the.point of the movement:

And my response:

I find it so hard to believe how some people are missing the point of #DoctorsAreDickheads.

WE KNOW not all doctors are disgusting human beings, that’s not the point here. The point is this is a way for patients to be heard – this is a way to shine a light on the abuse & neglect that the vast majority of chronically ill/disabled people face from medical professionals.

We are fully aware there are good doctors out there, but that isn’t enough, that isn’t okay…we need to be heard, & there needs to be change!

And there ARE doctors out there who are listening & understanding the movement!

I’ve retweeted a few good threads if you’re on twitter, I’m (@)SendSpoons 🙂

World Mental Health Day 2018

It’s #worldmentalhealthday 🎉

I’m diagnosed with major depressive disorder, generalised anxiety disorder, bipolar w/ psychosis, dissociative disorder & BPD. I literally have no idea how it is to be stable, to be neurotypical.

There is SO MUCH stigma surrounding mental illness, & in the UK at least it feels like we’re actually going backwards in terms of understanding & support for people who are mentally ill.

There’s finally a push for more common conditions such as depression & anxiety to be talked about, accepted & better understood – which is fantastic! But unfortunately other conditions are still heavily stigmatized, in particular BPD & psychosis. Individuals are viewed as scary, violent, selfish, manipulative…

In the UK, BPD(/EUPD) as a diagnosis is pretty much a death sentence in terms of treatment. It’s also VERY difficult if you’re wrongly diagnosed to then drop the BPD diagnosis, in order to be accurately diagnosed with something else. Even if you’re one of the lucky few who IS able to get reassessed & re-diagnosed, you’ll find its still brought up often, or you’re treated differently because BPD is mentioned on your file.

The way MH is perceived/treated in the NHS in general needs a massive overhaul. Support is hugely lacking, doctors are uninformed and uncaring…& people are dying because of it.

I know from my experience I’ve had numerous traumatic appointments, & my fair share of abusive doctors.

I’ve been told in regards to having hallucinations that I must be taking recreational drugs. I was 19, & already terrified. I was belittled, treated like dirt, left with zero trust for doctors. Tbh not much has changed since then haha! But after that experience I didn’t try get help in regards to my MH for months.

Even recently – my last suicide attempt was 6 months ago; two days before the attempt I’d been to my GP begging for help. Only she didn’t listen. She didn’t take me seriously; she offered no support, treatments or solutions, simply telling me to ‘come back if it got worse’. The message I received from that was “I’m not taking you seriously, I won’t do anything even though you’ve told me you’re actively suicidal. You have nowhere else to turn.”

There needs to be much more awareness & understanding, ESPECIALLY from medical professionals. These are people we turn to in desperation, & it’s all too common for them to turn us away or make us feel worse.

It’s all well & good for MH charities to produce campaigns telling us it’s okay to talk about how we’re feeling, that we should go to doctors if we need help or A&E when we’re suicidal…but it means NOTHING if when we go to A&E we’re belittled, laughed at, & bullied.

The stigma surrounding MH needs to be eradicated, & it’s the medical professionals who need to be targeted first & foremost.

The balancing act

One of the things I find hardest with my disabilities is balancing them all – they can’t just all be bad/flaring at the same time, can they?!

Because y’know, although that would SUCK, at least it would get all the awful symptoms out the way, & on my better days I’d really be able to enjoy them!!

Take recently: my fatigue has been awful, but for the most part my POTS has been slightly better than usual.

Then today I woke up with my fatigue feeling manageable for the first time in weeks, but my POTS was terrible!! This meant that a few hours after I had a nightmare shower (struggling to breathe, seizure, HR almost 170 etc), I was hit with some intensely punishing ME symptoms – exhaustion, brain fog, lots of body-wide pain, & a migraine. Bah! So despite my ME starting off fairly good today, I ended up in bed all day trying to doze away some really intense pain 😑

And then there’s mental health – if I don’t get out a little everyday (even if it’s only 15mins), my mental health takes a dive. But going out daily is too much, & results in an increase in pain & fatigue. Eventually this results in several days of being bedbound due to fatigue & pain 😕

Finding the balance & keeping everything in check is IMPOSSIBLE And it’s actually quite exhausting trying to manage & keep a handle on each condition, too 😅

I know I’m not alone in this struggle, so fellow disabled/chronically ill peeps, I see you!

And this is also something ableds really find difficult to understand, too. So abled peeps reading this, please try understand for your disabled friends/family members 😊