craniocervical instability, medical trauma, myalgic encephalomyelitis, NHS

NHS fail & high pain

Received an NHS letter today:

Uhuh okay, good one NHS…maybe if you’d actually told us about this appt IN ANY WAY, we would’ve attended?! 🙄

We received no letter, no text, no email…just this letter today saying we DNA. Oh , this again. Thanks NHS, always fun!
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Also if they got me an appt so soon, that means they expedited it, as the spinal specialist was supposed to have months & months of waiting…I hope they can speed it along again, given this was in no way our fault 🙄

And secondly…last night I was battling such PEM & pain after 2 small days out (rest day in between) 😥

I really hope I get offered some decent pain relief soon. I can’t cope when my pain hits such intense levels, & cocodamol & ice barely touch it.

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craniocervical instability, iMSK, medical trauma, NHS, seizures

How do I get help if not from the NHS?

Today I woke up with incredibly blurred vision, absolutely zero taste (haven’t had more than about 30% taste in over a week), but the scariest is my vision movement…it feels ‘glitchy’, jerky. It blurs & jerks when I turn my head or move my eyes, which makes talking whilst moving my eyes extremely difficult & walking extremely dangerous!

The world is out of focus & ‘whooshy’ too, my vision/brain just feels really messed up. Nothing feels real & I feel like I’m constantly on the verge of a seizure.

So obviously this is terrifying, & we’re once again trying to work out of there’s anywhere we could go for medical help (there isn’t), if it’s worth going to A&E, or what we can try ourselves…

Trying traction. Scared enough by recent times to try it & hope it doesn’t result in my death 😂😥

[Few hours later]

If we try traction again…I’ll make sure we lower the height & take the brace off slooowly 😂😱

I’m doing slightly better in terms of movement & vision, so I guess we’ll not bother trying to get medical help today.

Our options were pretty useless anyway: phone 111 (= get ambulance called); go to A&E (= no help, add to medica trauma, & huge increase in pain, PEM, seizures due to lighting); phone iMSK (= come across as annoying/needy, no help is given anyway).

This is why we seriously need to get my private upright MRIs done though.

It won’t bring much forth in terms of help, but I’ll know the extent of the damage & will have a diagnosis (which will possibly make seeing NHS professionals/going to A&E easier).

All I have currently are my measurements from my Jan 18 MRI (which NO professionals I’ve seen so far has had any knowledge/understanding of, & lets not forget the NHS read that as normal 😱), & no diagnosis.

The NHS doesn’t know what to do with me, nor are they putting any real effort in to help.

I’m on two waiting lists; one 9 months long to see a neurologist (idk why…) & the other to see an NHS spinal specialist. We STILL haven’t received this appt from the iMSK yet. And that’s the appt I need to attend *before* the NHS will refer me for *any* MRIs.

So if I was relying solely on the NHS it’d be over a year just to get some MRIs, & they also wouldn’t get me the upright MRIs needed.

Like…how is the NHS so useless?! 🙄 .

Also iMSK STILL hasn’t sent us any notes – my appt was 5 weeks ago 😑

They haven’t sent out the ‘summary’ notes they “automatically” send out after appts, or the notes we filled in a form & sent ID in for…when we requested my notes they said they had up to a month to get them to us; it’s been 3.5 weeks so we can chase them up soon!

actually autistic, discrimination, dysautonomia, medical trauma

The day before iMSK…

Well I didn’t feel well enough to go out today alongside other things I need to do before the iMSK appt (go over notes, type up/print my last notes, shower). So instead we decided to stay in, get everything ready, & dye our hair 🙂
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Even though I don’t feel great physically today, I definitely feel better than I have the least several days!

My joint pain is much better, overall pain has gone down a bit, seizures aren’t great but aren’t abysmal, & my heart rate is ‘good’ for me (50bpm increase). With as much of a rest day as possible today, I should be ready for iMSK tomorrow!

Also as it’s scheduled rain we won’t be taking Zeke, which means we’ll be able to go the inaccessible fast route to the train station rather than the 60min way…hey council, ya gonna sort the scaffolding & stop breaking the law anytime soon? 🙄

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Blue boy 💙

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Uuugh, disaster walkwheel. Not AT ALL what I needed the day before a big medical appt 🙄

Obviously both my autism & medical trauma means any appts are hugely stressful for me, but this one is especially so as:

– I’m expecting to be met with cluelessness
– there’s a lot of complex information to get across (explanations about ME, what CCI is, how they crossover, missed hEDS)
– & this is a service I have no experience with.
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For an autie, this is A LOT to handle.

I was hoping this walk would be a nice distraction, but nah, it just triggered a meltdown. The final trigger is always something so ridiculous, as by then I’m way beyond threshold (“the straw that broke the camel’s back”).

This is known as “trigger stacking” in the dog training world. On this walk the final trigger was Lyle attaching my lead belt wrong when Bandit was on my lap 🙃
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So fricking unlucky. There was a 20% chance of rain at 11am, we waited in all day until the entire rest of the day was below 5%, then went out. It hadn’t rained ALL DAY. Until we were out 😑

Bandit alerted to my meltdown, which was good…but what a shite walk.

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Still haven’t sorted the last few of my notes for tomorrow.

Lyle laminated my DIY communication book today. We spoke about the appt as I was stressing, especially about how to answer that BS first question of “so why are you here today?” 🙄 As an autie that blows my mind; I really struggle with what to say, don’t know how to word it/explain it. Tomorrow’s particularly difficult as there really is SO MUCH STUFF.

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This is my DIY communication book for when I’m nonverbal.

I have an app on my phone, but I prefer a physical form as:

  • it’s easier for me to use
  • doesn’t cause issues with photophobia
  • is silent (my app verbalises the phrases & I often forget to silence my phone)
  • & my hand tremors can’t communicate something entirely different than what I wanted 😂

I also like that I can tie in my pronouns, overall health, & how medical professionals should treat me, too!

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 😂

disability, Disabled, medical trauma, NHS

The NHS fails. Again.

(Copied from instagram)

I am SO PISSED OFF. We both are. The fucking head GP didn’t ring, did he? 😡 *rage screams* 🙄 Lyle phoned the surgery this morning to check the call was happening & notes were on the system (they weren’t, staff then promised they would be by 5.30pm). At 5.40pm Lyle rang the surgery, double checking we were still getting called (entirely because they’re useless & we don’t trust them). Receptionist assured us we were definitely getting called, between then & 7.30pm.
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Since then we have done NOTHING but anxiously review our notes, goals, & wait for the phonecall…and he DIDN’T FUCKING RING. Honestly, angry doesn’t even come close – fuming, tearful, terrified…
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It is CONSTANT fuck ups from the NHS.

Seizures repeatedly blamed on MH by a handful of arsey GPs, leaving me with no support & having to find everything it ourselves. A GP that left me hanging for 6 months about severe ME; who wrote on my records after the first visit that I was “housebound due to anxiety”, then eventually referred me for phone CBT – for severe ME?! 😡 A dr who said she wouldn’t treat me as she’d “never had a patient with ME or CCI before”. Then – FINALLY! – we get a way to talk w/ the ‘good’ dr without waiting months, waiting ‘just’ a week for a phone appt…& he doesn’t ring even after we’ve checked TWICE that he’s going to?!?

I could cry.
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I am SO SCARED for my health, & I CAN’T GET HELP FROM THE NHS. What am I meant to do?! We have no money to go private. I’ve emailed a neurosurgeon in the US who specialises in CCI, but I need £300 just to talk w/ him about my scan, & his receptionist hasn’t even replied to tell me if he’s taking on new patients yet. I’m so desperate for help & I DON’T KNOW WHAT TO FUCKING DO.
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And now I have a killer headache from all the stressing & waiting for the shitty call, too 🙄

There’s nothing we can do tonight, everywhere is shut. Tomorrow Lyle phones PALS & start a complaint, then Lyle phoned the surgery & demands to know wtf is going on. Ugh 😡🙄😭

disability, Disabled, medical trauma

A handrail!

Copied from my instagram:

Yep, that happened 😂😌 But hey our hand rail is here unexpectedly! No idea what it is or where it’s going, but 😅
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After UC messing up last week (phoning to make sure we were attending an appt which was dated LAST YEAR, & which we had LAST YEAR), they gave Lyle a time today for a work coach to ring. He phoned UC this morning whilst I was asleep to try give me an easier time (benefits are pretty much as stressful on me as the NHS), but the work coach still has to ring this afternoon 🙄 HOWEVER the person he spoke with was absolutely fantastic (1st time for everything 😱). She saw the amount of PIP I was getting, & was genuinely horrified that I had been left with so few points with my health how it is (I get highest mobility rate, but for planning journeys not limited mobility, & zero care rate – bearing in mind Lyle does all cooking, cleaning, helps me on the loo, in the shower etc). Obviously we’ve always known I qualify for way more, but as the appeal process is so stressful & dangerous (and we have enough to scrape by), we let it be. The UC woman said she understood this, but that “PIP isn’t a charity, it’s something you’re entitled to & deserve to get” 😱
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So that was pretty incredible, & now Lyle’s talking to me about starting a new PIP claim (ahead of my review in February, which I’ve been freaking out about since last summer) once we’ve collected our recent dr info. Weirdly I’d find adding more info/new conditions to PIP easier than waiting for February, because I’d be in control & wouldn’t be hanging about not knowing when/what will happen. So once we’ve tied up a few loose dr ends, we’ll seriously consider this.
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And finally, today is the last day that the head GP is supposed to be ringing us (remember he was supposed to ring twice last week, but just didn’t?). Because Lyle doesn’t trust him AT ALL, he’s gonna ring the surgery late evening & remind them it needs doing.
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My head’s swimming, I was already spacey from singing. Then Lyle told me all this 😲 3rd bed day today. I’m exhausted, bored & now STRESSED.

[Edited to add photo of my new badass handrail, courtesy of my partner!]

actually autistic, medical trauma, myalgic encephalomyelitis, NHS

Dr update

Woke up from a nap to Lyle finishing up the phone appt with the GP.

Supposedly went very well, but after our initial ME appt last January, we’re all too aware appt vibes CANNOT be trusted, as #doctorsaredickheads 🙃

But Lyle was on the phone for over 20mins 😅

He went through my symptoms – seizures, orthostatic intolerance (inability to sit without losing consciousness, HR increasing by 80+bpm upon standing), chronic pain, migraines, PEM/PENE, how limited my life is, & he was able to say a private occupational therapist had evaluated me & prescribed a stairlift, wet room, & railing (still not sure we’re getting all 3, not heard from the grant people or our landlord).

Lyle said the dr seemed pretty horrified at how we’d been messed about & left to struggle alone so long, which is a good sign. She could see we’d been trying to find answers for my seizures since 2017, that I’d had an abnormal EEG reading, & that nothing had happened since. She said it wasn’t acceptable that I’d been left with no diagnosis in this condition. She’s talking with the head GP of the surgery to find out how we’d go about getting an ME diagnosis with no specialist, & we’re calling back mid next week.

I so, SO want this to actually be positive & a step in the right direction…