(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 💙
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)
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.
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 😭
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 😥
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 😂
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 😂
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 😅
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)
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 😱
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? 🙄
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 😂