disability, Disabled, wheelchair

The future! [part 1]

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Well, kinda big news kinda not. But it feels big to us 🙂 This is hopefully where we’re going to live in a few years time!

We won’t be looking for about 18 months, but we’re excited 😊

There are lots of reasons for this move:

1. This place is amazingly wheelchair accessible – wide curbs, dips, ramps etc 😍
2. It has 8 GP surgeries (where we live now there’s two; 1 isn’t wheelchair accessible, both are atrocious – my surgery has a 2-3 week wait for *emergency* appts)
3. The local hospital is really good (it’s where I saw my only neurologist & we travelled that far due to the short wait). There are shorter wait lists, specialists that aren’t available here, really good patient ratings, & official reports are much better than the local hospital
4. Rent is £100-150 cheaper a month than here 😜
5. We could move into a ground floor flat (currently there are half a dozen steps into our house) & wouldn’t have to worry about adaptations to the property
6. Our current area is very wheelchair inaccessible, which means every trip out involves bumps/bangs which is very bad for my neck!
7. This new place has everything we’d need in close proximity, with no need for travel – huge 24hr supermarket (😍), all shops, vets, cinema, places to eat, takeaways etc. Sounds silly, but we have to travel for any activities here, which is painful for me & an additional expense. We can’t even get taxis!

So, it’s hugely positive!

The reason we’re waiting so long is so we can try sort out everything that’s currently ongoing 😥

I can get my private scans & we’ll still have a year or so to rebuild funds. I can get my CCI diagnosis. We can wrap up all the loose ends in the NHS (rheumatology, ME, neurology). We can sort out PIP. We also need to gather evidence for the council to allow us to leave this property (we’re supposed to stay 5yrs after mods, but we had no idea of CCI at the time), so the more evidence we have the better.

Anyway it was a really exciting day for us 🙂

We planned for a future I very much might not have, but it’s left us so happy & looking forward with hope! ❤️

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actually autistic, disability, Disabled

Another autie struggle day

The builders turned up at 10am today unannounced and said they needed to pop in to do one final thing to the bathroom.

This immediately triggered autie panic & meltdown in me, because

  1. It was unexpected, unplanned, out of the blue (they told us on Tuesday they were completely finished)
  2. It involved being around a stranger, which I always need to prepare in advance for
  3. This was the first day since the builders left that I felt my normal levels of “wellness”, & I was excited to actually enjoy it

Instead the whole day has been constant stress.

Lyle had to tell the builder he couldn’t do it now, as Lyle was literally about to start interviewing a wrestler via Skype. The builder still tried to come in (“it’ll only take 5 minutes”) – like NO! Lyle’s interview was scheduled for right then, maybe you should have let us know in advance you were coming?! You can’t just fuck up his interview!

The builder said he’d come back after he’d ‘finished another job’. No indication of when that would be, & so at 2.30pm I’m in bed just waiting, super stressed.

I thought we were done with this 😥

actually autistic, disability, Disabled, ehlers danlos syndrome

Wet room complete

IT’S DONE 😭😭😍

It was a slog. It was incredibly stressful. Our carpet & ceiling are damaged, it took seven days longer than it was supposed to, & we don’t have a door…but IT IS DONE!!!

It looks gorgeous, & tomorrow I can shower (tomorrow morning is the earliest we’re allowed to use it) then head off to my iMSK appt. For now I’m exhausted & overwhelmed, but I’m sure I’ll love how this wet room helps in the coming months!

(I was going to do a day-by-day diary of how the wet room installation affected me in terms of physical conditions & autism…but that was when it was only supposed to stretch 5 days, & it ended up stretching 12!! So instead I’ll just add these few bits.)

One of my biggest autistic struggles = when I don’t know exactly what’s happening (one reason I really struggle with medical appts) or when plans suddenly change. It really panics me. This results in intense stress & meltdowns. Which is what today is.
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I’m really struggling 😶

Are they even coming today? Will this add more time onto next week? Will this happen EVERY day they are supposed to be here? I hate that I can’t handle things like this…

And –

Terrible PEM/PENE from Saturday’s fun. No chance to even faintly recover – there’s been builders walking right past the bed every few minutes & lots of noise all day 😥 They leave the kitchen door open (understandable as they’d be constantly having to open it) but the light triggers my seizures (big reason the kitchen is inaccessible to me), & each time they go by they set the oldest (idiot) dog off barking, which was agony 😥😭

actually autistic, benefits, bipolar disorder, iMSK, NHS

The worst

1) The builders told us as they left today that they should be finished next Tuesday. They were supposed to finish LAST Tuesday & then we’d been left believing all day they’d be finished today.

2) This meant my partner had to rearrange his UC appt again, as he can’t leave me at home alone with builders & without a toilet. On the phone to the benefits guy (who was lovely) he said he had to tell us that “this might affect your benefits; it might not but it could”. Absolutely terrifying.

3) The NHS, after us fighting & putting so much effort in since last January, finally said they would offer support to do with my ME. They also said that they’d diagnose me with ME, which would mean we could apply for PIP without having to wait until after the next iMSK appt.

But then they phoned today, & said instead of doing that they’d ask the iMSK clinic to provide support & diagnose it – iMSK doesn’t deal with ME, they are not ME specialists, & they don’t diagnose conditions; they’re a sign posting service.

So now we’re going to have to sort that out with them & ask them to pass it back to the head doc.

4) Because they’re delaying my ME diagnosis again, & we have to wait at least a month to even see my iMSK notes, we now can’t apply for PIP anytime soon.
We need to apply for PIP asap so UC stop demanding Lyle go in for meetings & can take him off the”intensive work” scheme. PIP left me 1 point off getting low care rate, which means Lyle (who is my full-time carer) can’t be counted as a carer on the system, & so UC has to place him on the intensive work scheme.

5) IMSK aren’t answering the phone, which means we can’t deal with: increased symptom severity, get them to send the ME stuff back to the head dr asap, & ask about the notes they supposedly automatically send out (which we never got) & the appt to the spinal specialist which we should have info on by now.

6) My parents were supposed to be coming up this weekend, & we were really excited to have a day out to relax…but they made it clear if the wet room wasn’t done they wouldn’t come, so that’s gone.

7) The quail eggs are due to hatch on Monday, & due to builders potentially turning off the electricity without telling us, the incubator has to be in the kitchen (as it’s a different circuit). The kitchen is inaccessible for me, so I’ll either be really symptomatic or simply won’t be able to watch them hatch. It won’t be as cute either because there’ll be builders walking by repeatedly, hammering, sawing etc 🙄

8) And finally this building work has been absolutely awful for me. I’ll do a day-by-day diary of the time they’ve been here once the wet room is done, but to give you an idea of how badly it’s gone, in the 10 days they’ve been here I’ve had meltdowns on 7 of those days. I normally average 4 total meltdowns a month.

TW mild suicide mention

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I’m completely stressed & overwhelmed and just want to break down and cry. My mind is erratically flipping through ideas of suicide & I’m just so totally exhausted & done with all this.

ableism, ableist, wheelchair

Mobiquip – supplier of mobility aids: DO NOT BUY FROM!!

Mobiquip is the company I ordered an Excel Explorer wheelchair from late last year.

It quickly became obvious that the wheelchair was faulty – one of the wheels didn’t connect properly. It was hard to take off/put on, would wobble during use, & eventually got to the point where it would fall off.

Lyle tried several times to get it to work but, just over a month after purchase, the wheel fell off on a walk whilst I was in it. Obviously after that we stopped using it because that is EXTREMELY dangerous, especially given my conditions!!

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The chair had a year’s warranty, so initially we tried to get a replacement. We repeatedly tried to contact @mobiquip, but the people we needed to speak with were never available & didn’t call back – This happened dozens of times.

We eventually contacted them on instagram. After such terrible customer service we decided to return the chair & get a refund.

The problem then was getting the wheelchair back to them.

We have very little funds & we don’t drive – postage for a 16kg wheelchair was a lot, & getting it to the post office (15min walk away uphill, then told we needed to go to a bigger one which was a 30min drive away) was impossible. It meant relying on unhelpful family members to assist us, which involved waiting months, & then finding a time when I’d be safe left at home.
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After being told it would cost £60 at the post office, we ended up ordering door-to-door collection with a postage service as it was cheaper (£25). But they messed up twice, delaying collection by several weeks.

Finally the wheelchair was sent & after months of stress, we thought it was sorted.
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Which leads us to today. Mobiquip phone Lyle saying they weren’t expecting the chair to be in such “used condition” (it was my primary chair for 1.5 months & we bought it so I could go off road, what were they expecting? Also you can see in the photos it was not in bad condition AT ALL!)

Instead of giving us a refund for a FAULTY wheelchair that we bought from them (& have had a hellish time returning)…they’re now not giving us any details about if/when we will get a refund.

That is £360 that would go towards my MRIs.

Lyle did a live chat with them on their website, but they were useless.

Bottom line – DO NOT USE THIS COMPANY!!!!!

actually autistic, geocaching, NHS

Second geocaching adventure & scary appts

We’re having our wet room installed this week, & it’s been absolute hell.

One of my biggest autistic struggles = when I don’t know exactly what’s happening, or when things change unexpectedly. This is one reason I really struggle with medical appts. It really panics me, & results in intense stress and meltdowns.

With the addition of extremely loud noises (hammering, drilling), the discomfort of having strangers invade every part of your house, things going wrong with our bathroom every step of the way (resulting in additional days being added), AND pain from having to lie on the floor upstairs to hide out the way…it’s been absolutely awful! 😅

As you can see, I have been struggling hugely with the whole process:

And as if coping with that wasn’t enough, this week we have two medical appointments ON THE SAME DAY!! 😨

Medical appointments are my biggest stress, due to both autism & some hefty medical trauma. To have two not only during such an awful week, but on the same day is…daunting to say the least 🙃

They’re both “make or break” appts too – if they go well, it would be two HUGE things sorted & really good news; if they went badly it would be absolutely terrible.

I really want to feel hopeful, but I keep having to check myself…there’s a huge chance neither appt will go well. I mean a) it’s the NHS, best not to get your hopes up, & b) one of the appointments is with the head dr who’s treated us shockingly for the last 3+ months.

Anyway.

I needed to escape today!

We knew I couldn’t cope with another day being stuck inside whilst building work went on, & so we went out geocaching!

And hoo boy have we improved 😃 Today we found 3/3, and one of them was one we failed to find the other day!!

The first (which was our second ever cache):

The second, which I found from my wheelchair – the first time I’ve managed to find one as they usually require standing or at least being able to turn your neck! 😂

The third, which had swapsies in!

What we put in (we didn’t take anything)

And after a few hours geocaching, we went to a local pub with a lovely beer garden. Lyle had two wonderful ciders, Bandit played fetch after working hard, & then we went home 🙂

And Bandit working, alerting to my many symptoms/episodes!

dysautonomia, ehlers danlos syndrome, myalgic encephalomyelitis, NHS, seizures

“Why now?”

Apparently my parents were updating my grandparents about things that are going on with my health.

Idk what they told them specifically, but my grandparents said something akin to “Why is all this happening now?”

Me & my mum thought that was odd, as it’s not a ‘sudden’ thing.

It’s not like I was healthy my whole life, then all of a sudden this past year my body exploded with issues.

As a child I was incredibly hypermobile, to the point where my nana still shudders at my “party tricks” 😂 I was 9 when I experienced my first dislocation, which was my thumb dislocating. This happened when I closed a desk drawer at school.

I mean c’mon, that should have been a pretty obvious sign something wasn’t quite right 😂

At age 10 I broke my ankle falling off the couch 🙄 And from 13-18 I experienced 5 broken bones (2 of which we were initially told were sprains, but they later admitted were breaks), several concussions, & one full dislocation.

From 10-13 I was seen by many specialists due to issues with my hands. They would suddenly swell, turn purple/black, be incredibly painful, & I couldn’t move them. Most times we couldn’t identify the trigger, although cold was one we knew of. This resulted in a diagnosis of cold urticaria, but drs thought it could also be reynaulds, cold urticaria, or rheumatoid arthritis.

My mum said that “because it happened less as you got older, they blamed it on ‘growing pains’ & stopped being interested. But right up until your GCSEs & A levels it caused issues during exams.” To this day it still happens now every few months – so good job there NHS 😂

Anyway, there were always warning signs that I had underlying medical issues…they were just glossed over, ignored.

All through my 20s I’ve had pain – but how was I to know it wasn’t normal?

Everyone has pain, you ALWAYS hear people talking about back pain, or shoulder pain. You think it’s normal. I didn’t know that my pain was caused by my joints subluxing & was much worse than most people’s.

Likewise I’ve always experienced the odd migraine & frequent headaches. So as they slowly crept up to monthly, then several times monthly, then 4-6 times a month by 2015…I just accepted it. It wasn’t sudden, it wasn’t something I really noticed; only looking back & trying to identify when it got so bad was I able to pinpoint it.

It took us around a year to recognise my seizures for what they were, as againI had no idea they were seizures. You only hear about tonic clonic seizures; I had no idea there were other kinds! I’d mentioned these weird symptoms to my suicidal worker in 2017, & she was totally unconcerned – it was attributed to my bipolar.

It was actually someone on my old blog who first warned us i could be having seizures. They were an epilepsy nurse in the US, and to information from them we were able to track my seizures & identify triggers. This was in 2016, who knows how long I’d been having the odd seizure for…I remember periods of losing myself & time after showers in my mid teens; that could easily nice seizures relating to heart rate from standing in the shower & the hot water.

With my POTS symptoms, I had never heard of POTS. I had no idea my heart was increasing by 80+bpm everytime I stood. I complained to Lyle that I often “couldn’t breathe” or “felt like I was dying”, I complained I was suddenly feeling meltingly hot even in winter…but it didn’t come on suddenly. It wormed it’s way into my life, and I didn’t recognise it as a new symptom. It was just part of my litre, my new ‘normal’.

Myalgic encephalomyelitis was the first thing that affected me in an obvious way, but even that was once it had reached severe. I totally missed it until I hit moderate, & then was unfortunately advised to ‘exercise it away’. So I fought it harder; I was pushing through these terrible symptoms, trying desperately to get better…it made my health deteriorate much faster. I became immensely sick & finally symptoms were un-ignorable 😅

So really, struggling with my health is not new at all.

From childhood, I was not ‘healthy’, but none of it was recognised or taken seriously.

I wasn’t educated on what was wrong with me or what precautions to take. This resulted in my body basically collapsing in my mid 20s . And it’s just been downhill from there 😅

Even after several years of trying so hard to get help now, I’m no nearer to it. I continue to be treated badly by the NHS & not taken seriously. Everything we know so far, all the ways we’ve got to try fight my conditions…it’s entirely down to us, myself & Lyle, & hours upon hours of research, desperately trying to find answers.

The NHS has let me down my whole life. Which is why having to rely on them when I’m now so ill is absolutely terrifying 😂