actually autistic, disability, Disabled, myalgic encephalomyelitis, Uncategorised

Autie mess

Had a REALLY crap day today.

Builder was supposed to come round, the boss guy told us after he’d appeared to clear junk from our garden. We left a key & decided to try avoid any builder stress by heading to the city. Thought we could get away, have fun, & pick up a few bathroom bits (soap dish & soap!).

Train into town was super busy with both wheelchair spots taken (cue me freaking), but conductor said he’d let us on. Train was busy so I was stressed anyway, but as we were only going one stop I parked up neatly between people in front of the opposite doors (which wouldn’t be needed). Lyle put my breaks on (as I can’t with my joints).

Then a guy who was with one of the other wheelchair users came up & said “oh you don’t want to park with your back to the doors, park here instead!” I’m super flustered, Lyle didn’t hear what the guy said but I motion him to take my breaks off, then begin having to negotiate reversing into this stupid fucking space where the guy said – bearing in mind I can’t look to the side/behind.

As I’m on my second try, Lyle has to literally PUSH this guy’s hand away as apparently he was reaching for my wheelchair to ‘help’ – NEVER EVER touch a stranger’s wheelchair without consent!!! Dickhead obviously thought he “knew best” as he was with someone else in a wheelchair 🙄

For the rest of the journey I was totally shutdown. Lyle stood behind me blocking everyone else, & helped me by holding me in ways he knows I find calming.

Unfortunately town was really busy, which resulted in extreme paranoia & a meltdown…we managed to enjoy milkshakes & I got an awesome charity shop jumper, but after realising there was no way to salvage the day, Lyle walked us home (8 MILES 😥).

Getting back I was in a ton of pain and super weak; it was like the old days, I couldn’t talk, undress, get my shoes off, understand Lyle talking to me etc.

Best of it, THE BUILDER DIDN’T COME *AGAIN* 😠😭

Lyle’s been an absolute hero today. He’s been truly incredible, & I’d be doing so much worse now if not for him. Thank you Lyle 💙

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actually autistic, benefits, medical trauma, NHS

Big update & iMSK soon!!

(21st July 2019)

A truly awesome person got in touch & said they would PAY FOR THE SECOND-HAND POWER CHAIR FOR US 😭

So…we have the chair, it’s ours, my parent’s are bringing it up hopefully next weekend (yes it means I have to see them, but IT WILL BE WORTH IT!).

I was crying & stimming for about an hour, I kinda broke & am super exhausted now…the best type of exhausted 😂 I am so grateful, thank you 💙
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I am continuously blown away by people who have never met me…but who go to such measures to help when I need it. It’s hard to put into words how much this means, to me & Lyle. One person bought me an electric wheelchair; another has sent us money for food twice when we couldn’t afford any ourselves. I have instagram friends who check up on me; who are there in my darkest moments; who donate items I need but can’t access; who rack their brains constantly to help solve problems…& I am SO GRATEFUL FOR YOU ALL. I don’t know what I have done to deserve this, I definitely don’t deserve this, but thank you! 💙

(24th July 2019)

I cried so much last night. New symptoms + bipolar depressive episode is…really shit 😂

It’s thinking about Lyle left on his own that always completely breaks me. That’s the saddest thing & so obviously depression latches onto that.

This depressive episode was triggered by dealing with the NHS. Medical appts are my number 1 bipolar trigger 🙃

I’m hoping it’s a short one, I’ve had 2 weeks of depression so far & it can last months…it needs to bugger off asap. Only 2 days until my power chair is here!!

(26th July 2019)

ITS AMAZING!!!!

And it’s even nifty enough for me to manage it in our small living room 😃 Enjoy me crashing in the second video…pretty sure Lyle cursed me 😂

I LOVE IT!! The front castors sometimes struggle to do sharp/immediate turns depending on their position, but it’s not a big issue even on carpet…I CAN’T WAIT TO TAKE IT OUTSIDE WHEN THE RAIN FINALLY STOPS!! Thank you so much 😃

(30th July 2019)

I’m hugely struggling and idk how much longer I can drag myself through this bs.

NHS has fucked us about in two different ways today, & UC has called my partner in & we don’t know why. To say I’m depressed/stressed would be a huge understatement.
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Dr W supposed to ring between 9.30 & 10…when Lyle phoned at 10.30 they said he’s “running a bit late” but would call before 12. When Lyle phoned at 11.45 & said he wouldn’t be able to answer the call until after 2pm now, the receptionist said it was unlikely dr W would be able to ring in the afternoon because we were scheduled a morning appt…WHAT THE FUCK IS GOING ON HERE 😭
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The iMSK referral has fucked up & I’m scared they’re not going to accept me, which would mean waiting until March 2020 for the neurologist to refer me for my MRIs I urgently need…

I wasn’t even made aware they needed to accept me! But apparently normally the GP hears back from the iMSK clinic within 48hrs, then a week later the patient picks up the forms (which is what we’ve been ringing for).

But the iMSK hasn’t screened/accepted my referral & it’s been over a week – the GP is “chasing it up” now 😥
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And UC I have no idea what’s going on there, only thought is they’re giving Lyle grief because he doesn’t qualify as a carer (to them) because of the piffly amount of PIP I get (high mobility but for planning a journey not moving around, & zero care). I’m terrified he’s gonna be forced to leave me constantly, there’s nobody who could help care for me…

We are planning to reapply to PIP, add new conditions, & fight to get what I’m entitled to, but we were trying to wait for medical evidence. The reason they gave me so little before, despite my atrocious health, was that “if my health was so bad the NHS would be doing something & you’d have medical evidence”. So what do we do??

The only GP who is willing to diagnose ME we can’t get in touch with, & all my other conditions I’m waiting on endless referrals…ready to give up here I feel so overwhelmed 😭

(Posted 31st July 2019)

Flaring fun! Been stuck in bed w/ PEM…that pain, exhaustion & fatigue. Oof. Feeling so rotten is…depressing. On top of bipolar depression, it’s just…not needed 😂

I think my autism passport is finally done, after 8ish months of trying to get it all sorted? 😂 The guy in charge of doing it is useless, the template is glitchy af & legitimately impossible to work with…but I think it’s finally done! We utilised text boxes, printed before saving it, then scanned the printed copies back onto the PC 😂
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In other good news today Lyle phoned the GP surgery & asked for the contact details for the iMSK clinic. Doing their job for them, basically 😂

GOOD NEWS!

The iMSK sorted out and accepted my referral – we have an appt in LESS THAN 2 WEEKS!! 😱

So that’s really positive, now we have to hope they’ll actually listen…we *need* the MRIs & a referral to a rheumatologist from them; physio would be great, but they need to be aware of hEDS & CCI for that, so it makes me nervous 😅
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The UC thing with Lyle yesterday was indeed because they can’t accept that he’s a carer due to my PIP rate. Despite me needing care with everything, & him being a #fulltimecarer…because PIP purposefully left me ONE POINT off the lowest care rate, he *can’t* be put as a carer to UC.

Idk why this suddenly became an issue after 18mnths, but this means he has to be placed on the intensive work scheme. Him & his WC are figuring out things (eg courses) he can do from home, whilst still being able to care for me.

Yes, this is disgustin. And #ableist. But there’s nothing we can do 🙃

This means we’re having to urgently reapply for PIP to fight for the rates I’m entitled to, as it’s now seriously affecting several other things. Basically it’s all a big mess because the UK is disgusting in its treatment of disabled people & disability benefits 👍 (isn’t everywhere though?)

(1st August 2019)

Today’s been a better day physically so I think I’m crawling out of PEM from my parents’ visiting last weekend.

Mentally though today has SUCKED. Depression is still very heavy, & in addition I’ve been autistic panicking/obsessing about the iMSK appt.

WOW do I struggle having appts that aren’t predictable & where I don’t know what’s going to happen 🙃

Lyle has been great at talking it all through (repeatedly 😂), reassuring me, & coming up with solutions bless him 💙

I spent several hours spread across today writing notes for the appt, which helped a little.

We made it out on a dog walk but it was a very rare trip out where I didn’t enjoy it at all…too struggley!! We did get caught in a storm though, scorching sun one minute torrential rain the next! That was my favourite part, although Bandit hated it despite me wrapping him up in my jumper 😂

(2nd August 2019)

PEM-y af.

Apparently PEM/PENE from this weekend is not done with me yet 😥

My exhaustion is incredible. It’s not been this bad since before we knew about CCI, so that’s fun. I’m sat in Zeke to exercise my neck & it’s torture. Pain isn’t so bad, HRs doing good, #seizures are normal…but the exhaustion is crippling.

I might take a benadryl to force more sleep, as awake I’m just a zombie anyway. It’s gloriously sunny out, so I hope I manage a walkwheel at some point.

Today’s the start of a new week’s budget, so after speaking with the mobility place we’ve bought Zeke’s new batteries!! 🎉 They were £100, so we can’t afford much else haha, but eeeeh flipping exciting! Estimated delivery is THIS MONDAY too 😱

(Posted today)

The letter for the iMSK clinic arrived today! 🎉

And my title was correct, which made me feel ridiculously grateful. The place that is worse for misgendering me & ignoring pronouns is the NHS 😕 The letter said that they have Q&As on the 2nd sheet of paper, which I was excited about as I’m an anxious autie…but obviously we didn’t get a 2nd sheet of paper, so 😂

Not too big of a deal though as Lyle was going to ring them as soon as we got our appt letter anyway, to ask lots of questions about the appt & explain I am autistic.

The letter also said the team could travel to the GP surgery a 10min walk from us, which would’ve been nice if the scaffolding didn’t mean our town centre is inaccessible to me 🙄 So we’re keeping the appt in the city, as we can get in the rain strain a back way & avoid the scaffolding.

Speaking of which, I’ve posted screenshots of the email Lyle sent to the complaints team of the highways dept.

We phoned them when it had been exactly 22 working since we first reported the scaffolding to them, & they hadn’t even done the inspection yet so it’s no closer to being resolved. 22 working days was the ridiculous limit they gave themselves, & they couldn’t manage to put 2 fucking ramps down in that time? Seriously? 🙄
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I’m still feeling chipper mentally. Physically not great, but at least I’m used to that! Going to head out on a little training walk with Bandit, although we don’t have many places to train as – you guessed it! – we can’t get into our bloody town centre 😂

actually autistic, craniocervical instability, NHS

Waiting 9 months for an MRI – will I live that long?!

(Copied from instagram, both posted 11.7.19)

Well, that’s ridiculous.

We were supposed to be getting a list of hospitals & their wait times, then we’d fill out a form for the shortest wait (our friend said he’d drive us). Instead what we found was an appt already assigned to me, at a hospital that is miles away, & the appt is for the end of March next year 🙄

I do like that immediately underneath it mentions the 18 week period you should be seen in, fucking useless arseholes 😂

Idk if we should just accept this appt, & try utilise PALS to speed it up, or if we should try work out who to contact to get the forms & info our GP said we would get 😕

I’m too tired for this shit. We’re also pretty sure I’m going into a proper depressive bipolar episode, it’s been raising its ugly head these last few days. This was obviously triggered by the ‘mad NHS week’ & the following flare. It’s the worst timed & least needed thing ever, I’m basically feeling terrible in every way rn 🙄

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Today has been utterly exhausting 😕

But we got some good (?) news today. Lyle got the number for an appts line by calling the surgery. The person he spoke with there said it was THE GP had chosen this hospital. Whuuuut? 🙄

We explained everything to him, & he advised us to phone our GP surgery,. We should explain we wanted to choose the hospital, & also ask that my GP write a letter of urgency for my neurologist referral. With that, they’ll speed up my referral & might even try keep it below 18 weeks. Why tf didn’t Dr Z do this from the get go?! 🙄
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So Lyle called the surgery. Before he even MENTIONED the appts guy, he was just going over my case, the receptionist had asked if Dr Z could not do a letter of urgency for my referral 🙄 She said she’d sort it.

We have no time frame for any of this. So even though this was (potentially, hopefully) a really good thing, all the uncertainty meant I fell down the rabbit hole…my brain couldn’t deal with recent stress, complete lack of time frame, & my current level of symptoms. This resulted in a huge autistic meltdown. I lost hours the meltdown tsunami. I still feel very broken/fragile 😥
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In terms of autism, some of my biggest difficulties are when things don’t have a time frame, are uncertain, or don’t happen when we’ve been told they will…it feels like the entirety of the NHS revolves all these things 😂

For an autistic peep who finds that immensely difficult…interaction with the NHS is incredibly damaging to me. I’m glad I know I’m autistic now…so I know *why* I struggle with things like this in the world…but ugh it’s very hard.

actually autistic, myalgic encephalomyelitis, pets

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 😊

disability, Disabled, myalgic encephalomyelitis

A proper ‘hike’!

I GOT OUT ON A DECENT SIZED WALK!!! Yay! I’m manic atm so desperate to get out, but this crash is so bad I’m very limited.

But today we did it!

First time at the rectory ruins in bloody forever – & Bandit’s first time going 🙂

It was sooo much fun!

We tested my freewheel, as there are lots of potholey rocky bits, especially leading down to the rectory. Well, this was the first time at the rectory that I haven’t needed to stand/walk for parts 😃👏

Bandit had a blast 🙂 He alerted 7x total, to both my heart rate & seizures 💙

There were so many cars up on the pavements we were on the road most the time, which was a bit concerning 😂

When we got home my HR didn’t feel too bad; it was 160 which is low for me getting in the house. Good old binder; lowering heart rate but increasing every other nasty symptom 😂😌

I’ve rested & now eaten, so feeling exhausted and very symptomatic, but happy. Eating makes my heart rate & blood pressure go so screwy haha. These were taken a minute apart, just sitting in bed feeling terrible 😂

myalgic encephalomyelitis, NHS, seizures

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 🙃

medical trauma, myalgic encephalomyelitis, NHS

Always making my body crash

Pacing is so hard when the amount you can do us basically fuck all 🙄

Like, I know I’m lucky in the amount I can do compared to a lot of people with ME, but its still such a crumb of what I was able to do previously. It’s constantly so hard not to let it drag me down.

I have a physical GP appt approaching in the next few weeks (cue intense terror). This was the appt that had a month-long wait. I was supposed to be attending this appt after Lyle had sorted things out with my GP visa phone. However because the GP just didn’t ring & totally missed our phone appt, I can’t attend now as we don’t have the verbal contract needed set up 🙄

So the plan is Lyle will attend this appt without me. He can go in & talk everything through that he was going to on the phone appt we had booked in…he’ll set up the verbal agreement as explained by PALS, go over my needs, whizz through my medical notes, & bring up ME. This makes more sense rather than trying for another phone appt, which they’ll probably miss again & which there’s a 2 week wait for. If this appt goes well he can book me a physical appt (around a month long wait) that we can attend together, & if it goes badly we’ll return to PALS for more help.

Also here are some of my notes on myalgic encephalomyelitis. I make detailed notes on all my conditions, as these days my brain doesn’t function properly. This means it can’t be relied on to answer questions, remember symptoms, & provide examples…much easier with a notebook, & my partner can utilise it too.