Discrimination from local council & Cumbria Design Scaffold

We’ve been fighting the council & the scaffolding company (Cumbria Design Scaffold) for several months.

All we wanted was that they put ramps down where scaffolding has made the pavement inaccessible.

My main manual wheelchair is now broken thanks to their inaccessible design, & since then I’ve been unable to get to the shops, transport links, GP surgery, vets etc in the town centre 10mins from my house.

Finally, after waiting months, we were told they were putting ramps down.

Only they haven’t put ramps down, what they’ve actually done is closed the entire fucking pavement & told pedestrians to use the other side.

THE OTHER PAVEMENT IS TOO NARROW FOR A WHEELCHAIR YOU ABSOLUTE ARSEHOLES!!!

Hence why we need bloody ramps. Aaaagh the ableism is fucking breaking me 😭

Without ramps it takes 45-60mins to get into town the accessible way – 45min to the supermarket, 60min to the train station.

Next week I have a super important medical appt, it’s at 10am in the city…we’re gonna have to take the 60min route to get to the train station because the council are disgusting ableist pricks who don’t give a shit about disabled people. Time out the house needs to be kept minimal, that day will have HUGE repercussions on my health, & now it’s got an extra 2hrs added to it…UUUUGH.

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Yesterday’s fun

Morning

All symptoms terrible today ow and why. Wet room people came round couldn’t cancel again, they were lovely will post about it later gonna go try survive this current crash.

Evening

Oof today has been a battle, I have been SO unwell 😂 Finally started to feel human waking up from my third nap at 6.30pm 😂 TW for food on next slides!
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So the company the council has paid to do the wet room came this morning. The guy was so lovely!

He gave us colour charts to pick, told us which ones most people were going for, then went up to measure stuff. The paper chart are the walls, & the squares of colours were the flooring choices!

He asked if we were happy with the plan we’d got in the post, which we were, & explained they couldn’t do the bathroom door opening inwards as the bathroom is too small and it’d hit the toilet! We picked our colours, which was stressful but badass 😂
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The company does a lot of specialist bathrooms for disabled people, so we’re in very good hands! They’re coming to do it at the end of this month (aaaagh! 😍) & it will take a week 😱😂 It’ll be hellishly stressful for me, but the company seems awesome & it will totally be worth it!

Some of the specialty stuff they do for nursing homes sounded incredible…like a bath with a chair that raises the person, lifts & holds the person over the full bath, then the bath LIFTS UP TO GO AROUND THE PERSON so the carer doesn’t have to bend over the tub!
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Gonna try for a little dog walk now. I was excited about taking Zeke the long way into town today, but I daredn’t push my body too far with how crap I’ve felt 😂

After walk

Teeny walkwheel done. Kinda fun, kinda awful. Bandit alerted to a seizure & was incredible, but my right wrist is knackered 😥

Here he is being a little star though!

Quick bit of seizure awareness –

Complex partial seizures are not what you typically see being portrayed in the media, although they’re actually the most common type of seizure. Did you know there are over 40 types of seizures?!

In CP seizures, the person is totally unaware of their actions or surroundings, & has no memory of the event afterwards. During the seizure they may continue an activity they were doing beforehand, such as walking or eating. They may fidget, pluck at clothing, laugh, talk nonsense etc. Afterwards there is usually a postictal phase, where the person is confused, disoriented, & may have trouble speaking.

My right shoulder has been extremely loose today, constantly slipping in & out with me eventually saying to Lyle there’s no point making sure it goes back in 😂 Dunno if it’s related to that or not but my wrist started KILLING on this walk, with no trigger…it hurts so bad, feels similar to a broken bone but definitely isn’t. Super ‘ugh’ though.

Zeke is GO!!

ZEKE’S NEW BATTERIES WORK!!

Lyle’s officially a genius, as he was obviously the one who sorted it all out 😃😆

This was our first time getting to do a proper hike with him, & see how much he’ll enhance my life. It’s A LOT! 😍

This felt amazing. Being able to have that little bit of independence in deciding where I wanted to go, being able to be *beside* Lyle & talk easily, be able to adventure without feeling like a burden or that Lyle doesn’t want to do this as it’s a lot of effort & he already does so much…it was amaaazing 🙂

Zeke is a powerful beast. We took him on two VERY steep hills & he made them look easy on half power!! We were out over an hour and his battery level went down 1 bar out of 5 😃

Tomorrow we’re going to go the long way into town, which takes about an hour & involves a SUPER steep hill!! Then we can go around the supermarket TOGETHER, without Lyle having to push & do it all. I’m excited 😃

Preparing for iMSK & fighting the council

Oookay. Great. Thanks printer 😂

Lyle’s trying to put a weird old ink cartridge in, because ink cartridges are hella expensive 😂

Today I spent about a hour typing up the notes I’d already written out for my iMSK appt. My exhaustion & #brainfog are off the charts Rosario, making this activity HELL. I kept forgetting the damn words I had just read to type up 😑

Lyle offered to do it for me, but he was doing stuff with the council & my autism passport, so I was all snappish like “NO I CAN DO IT!!!” 😂 It was awful though, I felt so poorly afterwards.

Lyle phoned up the iMSK clinic & explained I’m autistic & that an overview of what the appt would entail would be helpful. They were great, I feel slightly better now (that’s good for me 😂).

  • The appt is 45mins long
  • They’ll discuss issues & symptoms
  • There’ll come up with a plan of how to help and what referrals I need.

Yay, sounds perfect!

We also got a response from the council, after they’ve had inaccessible scaffolding up for 8 months. We’ve been reporting it & fighting for ramps for 2 months, after doing down the step curbs broke my main wheelchair.

Well, THEY’RE FINALLY PUTTING RAMPS DOWN!! I’LL BE ABLE TO ACCESS SHOPS & TRANSPORT SOON 😭

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And finally, today is *battery day* for Zeke 😃

Idk when they’re gonna arrive, so I’m impatiently waiting and hoping it’s soon!

Zeke the power chair!

Zeke is my electric wheelchair.

He is a second-hand wheelchair that we found for £100. This was just after amazon had scammed us for £475, & we were left waiting 7 working days for the refund to come through. Because we had NO money, a super generous awesome instagram friend bought Zeke for us 😭

We were told Zeke was being sold so cheap as he had a lilt to the left. My dad collected Zeke & pumped up his tyres to the correct pressure, and we’ve never noticed even a hint of a lilt!!

The only thing Zeke needed was new batteries. In his current condition, he goes from full charge to zero in less than 15mins 😂

But they were £100, making Zeke possibly the cheapest electric wheelchair to ever be bought 😆 Zeke’s new batteries should arrive tomorrow & I’m soooo excited!

I still won’t be able to access the damn town centre until I’ve tested that his batteries would last the long way into town (50mins compared to 10 if the scaffolding was accessible!!). But I can try him out properly on full size dog walks. Really hope getting the batteries switched over is easy!

I already love having Zeke in the house. He’s made doing all the pets possible, symptoms permitting I can go from pet to pet & handle/feed them on my own…Lyle supervises to make sure my hands are working & I don’t have a seizure, & he fills their water. First time in years I’ve been able to do the pets when I feel well enough, without them having to be brought to the bed 🙂

Zeke also means I’m able to call the stairlift to get up to the bathroom myself, without Lyle having to get up to press it for me 😃

Hedgehog

Today we found a friend in need on a dog walk.

A hedgehog was being pestered by a cat, so we went over to check the little guy out. He’s very skinny & weak, with a URI, so we brought him home.

We treated him for parasites (hedgehog friendly treatment – we’ve had rescued African Pygmy’s in the past), offered him food & water, & he’ll spend the weekend with us until the place our vet surgery gave us the number for opens on Monday.

Poor guy was starving!

We gave him high quality wet dog food with additional water (for fluids as he seems very dehydrated). His staple will be cat food & bugs until he goes, but the wet dog food did a great job of getting food & fluids into him 😉

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 😂