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.

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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 😂