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 😅
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” 😱
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.
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.
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!]


A surprise visit

Today we had a somewhat surprise visit from a friend who I haven’t seen in a few years due to ME.

We spent an hour on the canal chatting, & it was awesome!

Afterwards he popped in long enough for us to make him try my new stairlift. It’s such an amazing, life-changing piece of kit for me that I make everyone try it 😂

And here are some arseholes blocking pavements, because I guess access & safety for disabled people doesn’t matter to them 🙃

Edit – OOF. I just slept since our friend left. I’ve woken up with *such* extreme PEM/PENE. This would have been the first time since getting a stairlift that if we hadn’t had it, I wouldn’t have been able to get to the bathroom, at all. My body is so exhausted it feels like I have weights strapped to me. I couldn’t even crawl to the stairlift. Pain is not too bad (yet?), but the exhaustion is as bad as it gets: incapacitating, with a lot of cognitive repercussions.

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.

A response to an article

Copied from my FB –

An absolute shitwit of a ‘journalist’ recently wrote an article with no scientific backing saying that myalgic encephalomyelitis is a mental illness. (I’ve been writing this for the past day, so it’s a bit delayed 😂)

If I had the energy, this would be incredibly upsetting. I’ve been living with ME since 2016, but at first I didn’t know. My early symptoms (extreme exhaustion, devastating migraines & light intolerance) were brushed off because, guess what? The NHS blamed them on my mental health!!

I increased my exercise, as advised by them, & over the next 18 months my health declined rapidly. It got to the point where I was stuck in bed crying in pain, & had to start using a wheelchair. Once I discovered I had ME (& thereby POTS, or postural orthostatic tachycardia syndrome, as a by-product) I was horrified to learn that exercise & ‘pushing through’ ME is a sure fire way to end up with a more severe form of the illness.

And this is indeed what happened. I’m now considered to have severe ME, although I’m lucky in that I can eat unaided, handle controlled lighting, & generally communicate.

I’m bedbound 98% of the time. I’m lucky if I can sit up without having seizures. I’m in constant pain. I can’t stand up easily unaided, & I can’t stand up or walk for very long at all. I’m lucky if I make it out the house IN MY WHEELCHAIR twice in one week. I can’t handle discussions, socializing, bright lights…ME means I deal with POTS, seizures, pain & crippling fatigue.

The idea that sufferers ‘want to be like this’ or are lazy (another argument made) is bloody ridiculous. I LOVE being outside & I miss hiking every damn day. I miss walking my dogs, I miss being able to train my dogs, I miss being able to do things with Lyle…I miss the world.

It’s time to stop being ignorant twits & start paying attention to what science is showing us – ME is a complex neurological disease, CBT is ineffectual & GET (Graded Exercise Therapy) is extremely dangerous. We need more biomedical funding, more education for drs (esp GPs who see patients first) & less ignorance!

So. Much. Ableism!!!

I had so many rest days last week, so by the weekend I actually felt able to leave the house. Which is good as I had family visiting, so I had a total of 6 hours out the house this weekend!!

I met up with family, including my grandparents who I haven’t seen for at least 4yrs. That was weird & awkward, but nowhere near as bad as I was expecting, we had some nice conversations.

First night we were meeting them for a meal. Because the restaurant was busy my family had been seated in a different room. This room had a different entrance, which wasn’t wheelchair accessible.

Lyle went in to ask if there was a wheelchair accessible way in, & as he was off asking my mum phoned saying it wasn’t wheelchair accessible but “they’d carry me in”. 😱

Before I could say hell no Lyle reappeared with a staff member. I hung up on my mum all flustered. Lyle said “they have a way in for wheelchairs”, so we both assumed that they DID have a ramp or maybe a back way in.

We get to the front entrance (several huge steps) & without a word the staff member disappears. I turn to Lyle & hurriedly whisper “mum-said-they’d-carry-me-in-&-I-don’t-want-that!”

Two guys appear. One holds the door open & the other guy approaches me & says “right let’s lift you in then.”

No explanation of what’s happening, no asking for consent – he comes right into my personal space and starts grabbing at my chair!!

As I’m autistic, this was immediately too much.

I blurt “no!” as he’s grabbing at the arm rests that can’t hold any weight, they just lift up. He then starts saying “I can lift here instead then,” & in my head I’m screaming – “I don’t want lifting you’re too close go away let me think please don’t damage my chair you could drop me!!”

But I can’t say anything because I’ve totally shut down 😫

So then these two guys are staring, one repeatedly saying “do you want lifting in then, yeah?” He’s been super condescending, & he keeps grabbing bits of my chair.

I can’t speak at all. Lyle finally jumps to my rescue & says “no, we’ll go somewhere else thanks”. He wheels me away.

I’m completely shutdown, nonverbal, & can’t respond at all.

Lyle pushes me to a quiet back street & calmly tells me he’s gonna give me space. He goes to the end of the road & calls my dad to explain what’s happened, & say I’m not gonna manage a meal now. I cry & stim. He returns, I manage to communicate I need a hug, then after a while we go to the canal in the dark.

And then there’s this…

1st photo taken on our way in; Lyle moved the sign as otherwise my chair couldn’t get past.

2nd photo taken about 2hrs later – THEY’D MOVED THE SIGN BACK.

Now we’ve had ongoing issues with this takeaway blocking the pavement; Lyle’s had to move the sign more times than I can count, & he’s asked them to please stop blocking the pavement *three* times.

This was not a night for them to be such ableist pricks, Lyle was already furious after the pub BS & this was too much for the gentle giant to ignore 😅

He picked up the sign, took it into the takeaway, & dropped it into the middle of the room. He snapped “my partner’s never gonna be able to get past if you keep blocking the pavement with your car & sign. I’ve asked three fucking times that you stop doing it”, then he left & slammed the door.

Apparently the staff’s faces were amazing 😂