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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Lunch at the pub

We had a lovely time out today, it was literal perfection 🙂

We went to the pub for a meal with my ADiT pup. The weather was glorious so we sat out in the beer garden soaking up a few rays.

Fun times 😊

On the wheel home Bandit said hello to a lamb, which was cuteness overload.

Clip of Bandit greeting the lamb, ignoring some idiots’ off lead Greyhound in the beer garden, & alerting 💙

I fell asleep within an hour of getting home & my pain was atrocious. Waking up it was even worse, and in addition my shoulder was out…that’s twice within the last 2 days I’ve woken up with my shoulder out 🙃

Here’s my partner putting it back in. He’s gotten good at it, but still hates the feeling & ‘thud’ as it goes back in 😂

Here’s a photo I already have of when it’s out:

And back in!

This happened too, so something in my neck had also been out for quite some time 😅

But despite an astronomical amount of pain, I still lay in the pet room this evening, & watched as my partner set the new turtle pool up! If you don’t like snakes/lizards/turtles, don’t scroll further!

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 🙄

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.

#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 🙄

Ugh, life

Tomorrow is Lyle’s actual birthday & I couldn’t be happier we celebrated (repeatedly) earlier, as I am just not in a good place.

I’m hypomanic, & I’m so frustrated with being stuck in bed all the time. I woke up from a big nap today thinking it was morning, & my brain immediately jumped to “I’M LEAVING THE HOUSE TODAY!!” 🙄

Like, no. You can’t, shut up!

Yesterday despite it being a rest day I crashed so bad in the evening, & couldn’t open/control my eyes properly, move, or speak – for several hours I was too exhausted to do anything. I absolutely hate ME, but hypomania in addition is literally the worst…I’ve done really well this month, I’ve only left the house five times, & I don’t want hypomania to ruin that & cause a potentially permanent relapse 😭

Tomorrow Lyle’s going out for a meal with some of his family, & I’m staying home…I’m so jealous 🙄 Hopefully I’ll just be able to sleep.

I feel like soon, life will improve so much – thanks to the OT & grant scheme we’re getting a stairlift (30th of this month), wet room, hand rail, & with savings we recently bought a power pack for my ♿. I’ll almost definitely be able to do more overall with these adaptations to the house, especially as one of the smallest activities that triggers the most fallout is climbing the stairs 2x a day.

However that doesn’t really help when I’m currently irritated af, just want to GET OUT, but my body is incredibly physically exhausted… 😕

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…