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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Well this isn’t accessible…

This is our route from our tiny village into town:

Does anyone know the law that means roadworks/diversions legally have to be wheelchair accessible? Would it just be The Equality Act? 🤔

There’s been scaffolding on the main road into town for MONTHS now, entirely blocking the pavement, & the curbs of the diversion are *huge*, one being about 6″.

I’m lucky I have Lyle, so I can manage, but often we opt to go on the road (which is busy) as we’re scared about the drop damaging my neck or chair 😕 .
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Lyle phoned the scaffolding company early last week (would’ve done it sooner but y’know, a lots been going on 😅).

At first the woman was dead arsey, saying the site had been inspected & declared it passed laws, but eventually she said they’d put ramps down. Still nothing though.

There’s no way to avoid this getting into town (where ALL shops, transport links etc are) as the opposite pavement is inaccessible due to width. Not sure where to report this to (?), but I’d love to be able to quote a law to the company…

Update…

We’ve been super productive this evening. We wrote out the Dummies “new GPs guide to problematic brain measurements & what they mean” (😂), printed that & my measured MRI images out, & sent an email to a CCI specialist in the US.

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If he agrees to take me on as a patient & can use the scan I have (brain MRI from January 2018), it would be a £300 consult fee. We’d have a few months I think to try gather that. If he found something wrong, he’d do a video consultation to explain/diagnose it, & what he recommends. Then we could use his diagnosis & notes to try extricate any help from the NHS (like getting blood from a stone 😂).
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I’m hoping he can use that scan, & not need the £1700 upright MRI…we have no funds, & I don’t want to delay anything! As ever, the process is stressful & very scary for us both. We’re plodding through it together! It doesn’t help when symptoms are so concerning, but I just have to try not to think of them & keep on plodding.

My experience of PEM/PENE

PEM (post exertional malaise), also known as PENE (post exertional neuroimmune exhaustion), is the key feature of myalgic encephalomyelitis, and differentiates it from similar or co-occurring conditions.

PEM/PENE is not simply “feeling tired” after doing an activity. It is an extreme increase in symptoms, & is generally a delayed reaction (usually by several days). It is also a prolonged state, & takes a long time to recover from (weeks & months rather than hours), and can even result in a permanent worsening of ME.

Here is my experience with PENE:

It hits 24-72 hours after ‘big’ activities (leaving the house, showering, appts), OR if I have seriously pushed my body too far, it can hit immediately after or during an activity.

This happened most recently when I had two days out with family in a row; on the second day I crashed within an hour of leaving the house with them. I lost the ability to react to my surroundings, couldn’t talk/respond, felt freezing cold, & needed immediate sleep. This is very typical of an immediate crash for me, although sometimes a migraine is involved.

Currently I am experiencing abysmal PEM/PENE from recent activities. Here is what it is like for me:

  • I’m having a LOT of seizures, & am feeling ‘spacey’ & on the brink of a seizure constantly
  • My exhaustion is unreal; I can barely move my limbs, can’t hold a drink, & am having to crawl to the stairlift to get to the bathroom
  • Cognitive difficulty is extreme – I can’t focus, my words get jumbled & I talk jibberish, I can’t hold conversation
  • Have lost my sense of taste
  • Experienced temporary loss of the use of my legs – I couldn’t move them at all
  • I’m craving carby food (big sign of relapse), so we’re getting takeaway 🍕 for the first time in weeks as I neeeeed it

Even though 85% of the last 4 days has been spent sleeping (as a result of pushing myself too far) I am –

  • beyond exhausted
  • desperately need sleep
  • can’t think
  • & currently my eyes are streaming

Life with ME everybody 🙄

#doctorsareSTILLdickheads

In case anyone is wondering what my day would look like summed up in a photo 🙃😂

I’ve been in so much pain all day. My exhaustion is so bad I’ve spent about 6hrs total today lying in bed, lights off, eyes closed, doing nothing but letting my body rest. The rest of the time I’ve been cuddling my partner or reading.

NHS update: so we’ve been trying to get help for a particular health condition, myalgic encephalomyelitis, since January, only to be met with a bullying, condescending dr & the need for multiple complaints.

For the last 3 months my partner had been talking with the head nurse & she has been bringing my case up during weekly meetings, finding drs that would be willing to try help, & read the medical info we’ve gathered regarding my condition. She’s made promising noises week after week, but there’s been no progress, every week we call & are told the same thing – “phone back next week”.

About a month ago we spoke with a GP who wanted to help but “didn’t know anything” about my condition.

THAT IS HE PROBLEM, NONE OF YOU DO! THAT’S WHY WE’VE COLLECTED ALL THE MEDICAL INFO YOU NEED – THERE IS NO SPECIALIST NEARBY, THE DISGUSTING DR WE SAW IN JANUARY FINALLY CHECKED FOR THAT (then gave us a number for CBT – for a serious disabling physical condition – & shrugged his shoulders 🙄) WE HAVE NO OTHER OPTION, WE JUST NEED A GOOD FUCKING GP!!!

So. That GP said she would get the head GP to call us, hoping he would know more (he won’t) or that he will be willing to put in more effort to learn & help (he probably won’t 😂).

We had a phone appt scheduled several weeks from then, which was last Thursday. Guess what? He didn’t ring 🙄

When we phoned the surgery on Monday (giving him Friday in case he’d ring a day late), the receptionist said she didn’t know why the GP hasn’t rung us. She said he would call us today.

He didn’t ring.

So now my partner’s gonna have to make a physical appt (which is usually a months’ wait, but maybe he can argue it down as they’ve been fucking us around since January) & go in himself.

I am beyond sick of this stupid fucking cat-and-mouse BS now. This is how every interaction with the NHS goes; constant fuck-ups, no apology, no help.

I JUST NEED HELP!!!

I’ve been screaming this for 2yrs now, & all I’ve seen is #doctorsaredickheads who refuse to listen (& immediately blame my very obvious physical issues on my MH), & waiting lists that last years.

I’m still waiting to check if my seizures are epileptic. I first tried to get help for them way over 2yrs ago 🙃 They were repeatedly blamed on my MH by GPs who knew nothing about seizures. Then I saw a fantastic neurologist, who couldn’t believe my treatment & wrote that my seizures seem to be complex partial seizures – she wanted an EEG, a 24hr ambulatory EEG, & me started on anti-seizure medication. But she left, & now I’ve just been lost on the waiting lists, with a few fuck-ups along the way.

I know now that my seizures are almost definitely *not* epileptic, so I’m not as scared as I used to be. I know they’re physiologic & I know what triggers them (ME, dysautonomia, spine issues) – but back in 2017 I hadn’t a clue, & I was terrified. Would I get brain damage from them, would they develop into tonic clonic seizures, were they caused by a tumour?! I lived in such fear, & along with not knowing that I had ME I was unknowingly making myself sicker.

Imagine if I hadn’t found answers by myself along the way. I would still be living with that fear, with zero medical support, & having 25+ seizures a day 🙄

A day out – you don’t look sick?!

Today I spent a few hours out the house, & it made me think once again how disabled/chronically ill people are desperate for ableds to think beyond what they see when we leave the house.

I have severe Myalgic Encephalomyelitis, which means I function at 5-10% of a healthy person. As a result I am unable to go out much. When I do go out, I’m feeling as close to MY version of ‘best’ as possible, & that is the only time the world sees me – the rest of the time I am bedbound with excruciating symptoms.

For example, this is easy to see:

What a lovely happy time out! And of course, parts of it were lovely, & super fun…but at NO POINT was I symptom/pain free. Throughout the entire time I was having seizures, struggling with the environment, in pain etc.

Here I am having to lay on the ground to try reduce dysautonomia symptoms & enable me to breathe:

Next we have a video, & I’ll explain it below –

In the first clip, I am having a complex partial seizure.

Although we don’t know for sure my seizures aren’t epileptic, I don’t think they are (been waiting on the NHS for 2yrs to get them tested, & then tested again after an abnormal 20min EEG). However they 100% ARE physiologic, which refers to seizures triggered by physical things going wrong inside my body.

This is thanks to my ME & orthostatic intolerance. The easiest example is my heart rate; my heart rate increases by 80+bpm when I stand, & by 20-30bpm when I sit. These fluctuations trigger seizures, syncope (passing out) or blackouts.

On the train home today I had a cluster of seizures, resulting in literally a 30+ min blank I can’t remember, & about 15mins of constant seizures. When I have a lot of seizures in quick succession, I lose myself & get an amusing shocked expression – I was totally out of it here, I stumbled right after Lyle stopped recording “i don’t know how to human” 😅

Earlier in the day I also had a seizure on the steep ramp that goes below the platforms of our local train station, & apparently I started to fall out of my chair. My partner had to hold me up whilst also keeping hold of my chair & stopping it from rolling down the ramp 😂

In the clips of my partner talking, he’s explaining how something as simple as taking off a slip-on boot is extremely difficult. I didn’t have the strength/energy to pull my leg away to help slide it off as I was in a crash, but if he tried to wiggle the shoe off, my ankle partially dislocated. I couldn’t verbalize what happened/what I needed, so I was just yelling “no no don’t, DON’T, give give!” 🙄😌

Finally we have clips of Finley alerting repeatedly, the evening after a few hours out the house. He was constantly letting me know I very much wasn’t okay!

These are the parts abled people (especially friends/family members) don’t think of when they see you out & about, or see photos online. They assume we’re magically better, that because we “don’t look sick” in the photos, we’re symptom-free…it’s simply not true. It also needs to be understood that the world only sees us when we’re at our best (which is still extremely disabled/unwell!).

The number of times disabled people are told we’re “lucky” we “get to” rest/stay home so much (I had an online [ex] friend tell me this literally a week ago), or that they “wish they could spend all day in bed too” is truly disgusting.