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… 😕

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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 😊

PENE/PEM

PENE (post exertional neuroimmune exhaustion), or PEM (post exertional malaise), is probably THE most crucial symptom of myalgic encephalomyelitis.

PENE/PEM is the symptom that sets ME apart from similar conditions. Whilst it is very common for chronically ill folks with a variety of conditions to experience fatigue after activities, it is extremely different with ME, & in particular moderate or severe ME. With ME, even a small amount of activity (such as showering) causes a huge spike in symptoms that can last days, weeks, or months.

Symptoms during a crash include – exhaustion (often so intense you’re left bedbound – frequently unable to be around light, noise, often unable to speak); unrefreshing sleep (to the point where you wake up more exhausted than you would ever imagined feeling as a healthy bodied human); light sensitivity that means you can’t be around any light; migraines; seizures; body wide pain leaving you in agony.

The extent & duration of symptoms as a result of minimal activity, is what sets ME apart from having simply overdone it with similar conditions.

It’s easy to brush PENE/PEM off as no big deal, but in truth it’s extremely dangerous. Not only are the symptoms incredibly awful, but there’s a very real chance if you repeatedly push yourself too far, that your ME will permanently worsen. And yes, that is terrifying!

I am a cautionary tale, demonstrating this perfectly ~

I exercised heavily throughout my whole life, averaging 1-3hrs exercise daily. When I first began showing symptoms of mild ME in late 2015, I didn’t have a clue what was happening, so I continued exercising as normal.

My health declined at a rapid rate, to the point where I had severe light intolerance, experienced daily headache, severe neck pain, frequent migraines, & periods of being so exhausted I couldn’t open my eyes.

In early 2017 I began trying to get help for my seizures; I still had no idea about ME. I was having to live in total darkness due to the extent of my light sensitivity; I was in severe pain 24/7, having 20-30 seizures everyday, exhausted 24/7 (anytime I wasn’t out the house, I was bedbound) & frequently complained of “not being able to breathe” (air hunger due to POTS).

The NHS blamed all symptoms on my mental health & advised me to continue pushing myself to exercise. At this point I was doing 1-2hrs exercise a day, having constant seizures & brain fog so severe I couldn’t hold a conversation, & at home I was spending all my time in bed in agony. I couldn’t be around any light; we had blackout curtains up on the windows & our TV had to be dimmed alongside me wearing ski goggles.

As I continued to force myself to exercise despite crippling exhaustion & constant pain, I became sicker faster than ever. By February 2018 I was having to use a walker outdoors, & by April I became a wheelchair user.

Fast forward to April 2019 & I am still very sick. I’m pretty much bedbound, but I am able to go out the house a few times a week in my wheelchair. My seizures are drastically reduced (averaging 10-15 a day from 20-30) & if we plan my activities so I don’t overdo it, I can usually avoid the worst of worst symptoms.

The extent of fallout you get from doing activities (PENE/PEM) is unique to ME, & something every sufferer needs to try balance. If it hadn’t been for my OT appt being sprung on us this week (& having to go out to fill/print out forms the day before as a result), I’d have handled this week perfectly – the token system works! – but because we had a surprise appt & decided to go through with it, I’m now in a world of pain & scared I’ve damaged myself further 😕

The token system we use to prevent my ME worsening

Today is day 3 after the OT appt. I’m in the worst crash of this year. This evening my heart rate increased by 106bpm when I went from lying to standing.

My ‘fatigue’ is so bad that I crashed earlier & was unable to move/open my eyes/speak for over an hour. I’ve had two migraines, my entire body is screaming in pain, my joints are loose & my muscles weak.

All because I ‘overdid it’; & I only overdid it thanks to a text alert system failing (meaning I found out about an appt 2 days in advance!) 🙄

This is the activity that resulted in one of my worst crashes:

Saturday: 40 minute dog walk in my wheelchair, no self propelling

Sunday: 50 minute dog walk in my wheelchair, minimal self propelling

Monday: discovered I had an OT appt on Wednesday that I should have been told about last week. Had to go out for 2.5 hours; travelled to the town over via bus, to fill firms in & print them out at the library. No self propelling; severe symptoms all day.

Tuesday: rest day. Extreme symptoms.

Wednesday: 30min occupational therapist appt which involved having to go upstairs. 30min walk out the house in my wheelchair. Extreme crash, + migraine.

Thursday: extreme crash (huge increase in exhaustion, seizures, pain), migraine

Friday: extreme crash (huge increase in exhaustion, seizures, pain).

Idk when this crash will be over. I’m so bored. My donated, recently repaired, freewheel is itching to be used too – it’s killing me!!

Also the stress, exhaustion & insomnia has triggered hypomania too!

Fun times 🙃

Recent NHS fuck ups

  • On the 26th November we received a letter in the post saying I had an appt for an EEG *the next day*.

Great job guys 😑

There were also some huge issues with this appt ~ firstly, it gave me less than 24hrs notice, which is beyond ridiculous. According to the letter it was ready to be sent out in October!!! By the time I woke up & Lyle got the post, the phone line at the hospital was already shut.

2) I have never been told I would be having a sleep deprived EEG. It was agreed a sleep deprived EEG would be extremely dangerous for me, as missing sleep is one of the biggest triggers for my bipolar mania.

I was SUPPOSED to be having a 24hr EEG, which I found out about last June via letter. I haven’t heard anything since.

3) ME means I have to sleep/rest when I need to. I NEED to listen to my body, it’s taken me long enough to learn this!! Skipping sleep would make me immensely ill.

4) This hospital is supposed to have it on record that I can’t attend appts before 12pm…yet every appt they dole out seems to be between 9-10.30am 😑

Lyle phoned and left a message on the number provided. He cancelled the appt, explaining the letter only arrived today. He went on to explain that I was supposed to have a 24hr ambulatory EEG, not a sleep deprived EEG, as my health conditions mean that would be dangerous.

  • On the 29th November we received the exact same letter inviting me for a sleep deprived EEG, only the appt date was different.

They clearly either hadn’t bothered listening to our message, or had just entirely ignored what we’d said.

Lyle phoned up, left a bigger message, & asked someone to call back. Nobody did.

  • After having an amazing experience with PALS, we actually had a way forward to deal with appts. Due to a butt load of medical trauma & my autism, I struggle immensely with appts, & haven’t been able to attend any since summer.

PALS sorted it where I’d have several notes added to the system (these covered the fact I’m trans, explained it’s highly suspected I’m autistic & to bear this in mind, & to communicate with Lyle wherever possible), & advised Lyle to make a phone appt with my GP to sort out a verbal agreement of how the dr should behave.

This would cover not misgendering me, communicating via Lyle, giving me time to answer questions, and not blaming/mentioning mental health at appts for physical conditions.

Lyle booked a telephone appt; the soonest he could get was 2 weeks away.

I was stressing hugely on the lead up. I wrote a ton of notes, missed sleep, my depression got significantly worse, & we had several repetitive conversations about what Lyle would say, how he’d respond if the GP said this etc etc etc.

The day finally came, last Friday, & I was so excited to get it over with…

The GP didn’t ring 😑

  • Just prior to this, before we knew the phone appt was a bust, Lyle phoned up to book a physical appt for after the verbal contract was set up. The soonest appt we could get was a month away! 🙄

Even when I’m doing -100% of the appts I should ideally be doing for all my conditions, they still manage to constantly fuck everything up… 🙄

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!!! 😭

#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.