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 😅
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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” 😱
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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.
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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.
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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!]

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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.

Dr update

Woke up from a nap to Lyle finishing up the phone appt with the GP.

Supposedly went very well, but after our initial ME appt last January, we’re all too aware appt vibes CANNOT be trusted, as #doctorsaredickheads 🙃

But Lyle was on the phone for over 20mins 😅

He went through my symptoms – seizures, orthostatic intolerance (inability to sit without losing consciousness, HR increasing by 80+bpm upon standing), chronic pain, migraines, PEM/PENE, how limited my life is, & he was able to say a private occupational therapist had evaluated me & prescribed a stairlift, wet room, & railing (still not sure we’re getting all 3, not heard from the grant people or our landlord).

Lyle said the dr seemed pretty horrified at how we’d been messed about & left to struggle alone so long, which is a good sign. She could see we’d been trying to find answers for my seizures since 2017, that I’d had an abnormal EEG reading, & that nothing had happened since. She said it wasn’t acceptable that I’d been left with no diagnosis in this condition. She’s talking with the head GP of the surgery to find out how we’d go about getting an ME diagnosis with no specialist, & we’re calling back mid next week.

I so, SO want this to actually be positive & a step in the right direction…

Autism passport: done!!

After, I think, 2 months of constant effort…the autism passport is finally done. Phew.

Now I have another weapon to fight shitty drs & handle medical appts!Excuse me whilst I hide in a dark room for the next week… 😂

This is a local NHS scheme, & the passport actually instructs drs during any hospital visit that they must print out, read, & gang the passport on my bed. Any staff interacting with me are supposed to read it. This should hopefully be an awesome tool at stopping medical staff being dickheads, & limiting trauma.

Transgender Day of Visibility!

Yesterday was TDOV & we celebrated by going out for a few hours 🙂

We had such a lovely day!

I was already exhausted when we went out, so I’m REALLY paying for it today. But it was worth it.

We went to my now favourite place. It’s a totally accessible park, & although it’s only small, it’s beautiful!

I very rarely get to be in nature anymore, & ever since I was 10 years old I’d hike daily…so it’s something I really miss!!

Such a lovely time. Time spent outdoors with my partner is so special 🙂

Autism passport aggro

If I had the energy, I’d be banging my head against the wall rn 😂

So there’s a really cool local NHS scheme where autistic patients get a passport to fill in. This gets logged on your file, you get a copy too, & at hospital appts or visits, staff are asked to print the passport out, read it, & hang it on end of your bed. The passport gives staff crucial information about how your autism effects you (things you like, things you don’t like, sensory issues), & also has blocks to tell them about other health issues you have too.

For me, this will be an extremely helpful safety net, as at every hospital visit I’ve had to deal with abusive or bullying doctors.

Needless to say I want this tool asap, but unfortunately because it’s produced by the NHS & I guess a new scheme, it’s faulty af. I’ve tried filling this beast in eight times now, only for it to fuck up each and every one of them 😂

Text disappearing, icons disappearing, images disappearing, text changing size, images & text boxes overlapping each other. Like, just a ridiculous number of technical issues.

I thought I’d finally got it working today. But nope, nope, so much nope 😂

The sent file looked great. We re-downloaded it to check it was okay, & this is what we got instead!

Uuuugh.

If it worked it would be FANTASTIC. But 🙄

We’ve asked the guy for help for the third time, hopefully he’ll respond & we can get it sorted… 😅

I wasn’t out done asap as when I go see the GP about my hypermobile joints & rheumatoid arthritis, I wasn’t to hand it over to them. It’s been a loooong process 😂

Hypermobile me

Soon I’m going to be seeing someone about my hypermobility for the first time. I’ll be bringing up rheumatoid arthritis (as I found out recently drs highly suspected this whilst I was a young kid, but testing wasn’t done) & may mention ehlers danlos too, although I know the NHS are super lazy for testing that in the UK 🙄

Really though I just want my hypermobility & joint pain noted on record, painkillers/anti-inflammatories, & to be sure I don’t have rheumatoid arthritis.

I’ve been gathering photos & videos of my crappy joints doing what they do best – failing! – in an attempt to save me from having to demonstrate it to each medical perp I see.

Video of my bendy fingers/thumbs

TERRIER WARNING for the last pic, which shows tears in my skin from plaster tape.

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And finally here’s the Beighton Score, which is used to measure hypermobility & the likelihood of possible ehlers danlos syndrome.

I score 8 points, the only one I can’t do is put my palms flat on the floor with my legs straight 😂