PEM crash

I’m experiencing such PEM rn 🙄

I had my iMSK appt last Tuesday, on Thursday we had a picnic in my electric wheelchair, then on Saturday we went to Lyle’s parent’s for a few hours…so now I’m in a mega crash.

My exhaustion is off the charts. In my most well moments I can barely watch tv or read. Neck pain is awful. Seizures are bad. But mostly it’s the crippling exhaustion.

The adventures were fun, the appt was awful, but the PEM/PENE is the worst!!

(Bandit is my assistance dog in training, & yes he is extremely adorable 😉)

But these last two days? This is my reality…

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IMSK appt

iMSK appt was….mainly good.

Didn’t get the MRI referral, which is why the GP fricking referred me there & what I need urgently, so that is absolutely NOT good. But she said she was too worried she’d order the wrong ones, even when I told her what the CCI specialist in the US had asked for.

So she’s having to refer me to a spinal specialist to get the MRIs they think I need, which has a really long waiting list & involves a lot of traveling 🙄
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Consultant also hadn’t been told I was autistic/the adjustments I needed, which Lyle had phoned about last week & was told they’d pass them along.

The biggest issue with this was it meant I didn’t get detailed explanations of what she was going to be doing in tests, or asking for consent several times (as when I’m making I’ll just say yes automatically). So one test involved stroking all along my face, which I wasn’t told about & which pushed me WAY over threshold. It caused hours of struggle afterwards 🙄 She also misgendered me, despite my cap covered in pronoun pins. This also made me autie struggle a lot more, & feel lost/overwhelmed.
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But the good:

  • we’re getting referral to a spine specialist so they can decide which MRIs I need (this will be a wait of months 🙄)
  • she agreed that I almost definitely have hEDS & has said in our next appt we’ll go through criteria.
  • she’s booked me an appt to see her again in 6 weeks
  • she’s gonna talk to the rheumatologist, regarding EDS diagnosis (see below as to why)
  • she’s also getting in touch with pain management & has suggested amitriptyline for me

Apparently in this area there’s no way to diagnose EDS – they have to apply for an out of area grant & send me to a specialist in Sheffield. The grant is exceedingly hard to get, so yet another diagnosis might be unobtainable due to lack of services in my area. Welcome to healthcare in the UK 🙄

iMSK consultant also pulled up my recent bloodwork, & said my inflammation markers were high. I wasn’t told this by my GP surgery, I just got told my iron was low. So she’s ordered a repeat bloodtest before I next see her 🙂

The last 1/4 of the appt was lost to me as seizures were triggered. She asked me to stand up (turned out so she could do Romberg test); I told her I’d have a seizure, she got iffy, but I pushed for it as I wanted her to do all the tests she needed. Unfortunately after the seizure due to all the bright lights I crashed & could barely formulate thoughts due to fog…so I was pretty ‘blank’ for the rest of the appt 🙃
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Overall…kind of a positive appt.

Didn’t get what I need most, but we got some positives.

It did trigger a huge shutdown/meltdown episode, which left me feeling unable to handle going through the city/getting a train home.

As a result Lyle ended up pushing me 8 miles along the canal (constantly reassuring me he loves hiking & the weather was gorgeous 😂) so I’d be able to recover/wouldn’t have to deal with loud noises/lights/crowds 😭

Hugely grateful to him, as I wouldn’t have been okay otherwise. As it was I could rest, recover, & talk through my confusion 💙

The day before iMSK…

Well I didn’t feel well enough to go out today alongside other things I need to do before the iMSK appt (go over notes, type up/print my last notes, shower). So instead we decided to stay in, get everything ready, & dye our hair 🙂
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Even though I don’t feel great physically today, I definitely feel better than I have the least several days!

My joint pain is much better, overall pain has gone down a bit, seizures aren’t great but aren’t abysmal, & my heart rate is ‘good’ for me (50bpm increase). With as much of a rest day as possible today, I should be ready for iMSK tomorrow!

Also as it’s scheduled rain we won’t be taking Zeke, which means we’ll be able to go the inaccessible fast route to the train station rather than the 60min way…hey council, ya gonna sort the scaffolding & stop breaking the law anytime soon? 🙄

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Blue boy 💙

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Uuugh, disaster walkwheel. Not AT ALL what I needed the day before a big medical appt 🙄

Obviously both my autism & medical trauma means any appts are hugely stressful for me, but this one is especially so as:

– I’m expecting to be met with cluelessness
– there’s a lot of complex information to get across (explanations about ME, what CCI is, how they crossover, missed hEDS)
– & this is a service I have no experience with.
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For an autie, this is A LOT to handle.

I was hoping this walk would be a nice distraction, but nah, it just triggered a meltdown. The final trigger is always something so ridiculous, as by then I’m way beyond threshold (“the straw that broke the camel’s back”).

This is known as “trigger stacking” in the dog training world. On this walk the final trigger was Lyle attaching my lead belt wrong when Bandit was on my lap 🙃
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So fricking unlucky. There was a 20% chance of rain at 11am, we waited in all day until the entire rest of the day was below 5%, then went out. It hadn’t rained ALL DAY. Until we were out 😑

Bandit alerted to my meltdown, which was good…but what a shite walk.

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Still haven’t sorted the last few of my notes for tomorrow.

Lyle laminated my DIY communication book today. We spoke about the appt as I was stressing, especially about how to answer that BS first question of “so why are you here today?” 🙄 As an autie that blows my mind; I really struggle with what to say, don’t know how to word it/explain it. Tomorrow’s particularly difficult as there really is SO MUCH STUFF.

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This is my DIY communication book for when I’m nonverbal.

I have an app on my phone, but I prefer a physical form as:

  • it’s easier for me to use
  • doesn’t cause issues with photophobia
  • is silent (my app verbalises the phrases & I often forget to silence my phone)
  • & my hand tremors can’t communicate something entirely different than what I wanted 😂

I also like that I can tie in my pronouns, overall health, & how medical professionals should treat me, too!

10th August 2019

The “hi, done with life today!” look.

Life is all the pain today.

Seizures are high, joint pain is high, neck pain is high, & I’d say there’s an 80% chance of a migraine.

This is PEM/PENE for our fab beach day 2 days ago 😭

Our village is flooded, kinda gutted I’m too ill to go check it out.

Thursday 8th August 2019

Welp my shoulder had been partially out for 2 days & that is why it had been so immensely painful 🙃😂

I was reaching for something with my other arm last night, there was a CLUNK & I yelled in pain, then all shoulder pain drastically lowered. Since then I’ve been able to move it with minimal crunching/grinding yaaay.

First day I’ve woken up with no shoulder agony in quite some time 😂

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Alright heart rate calm tf down 🙄 This was as Lyle was helping me get dressed…we’re taking Zeke & Bandit to the beach with a picnic, & we’ll hopefully get to paddle/swim 😃

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Basically this was THE BEST TRIP OUT EVER 😊

Zeke handled the beach like a champ (one ditch where I had to stand as Lyle got him over, then obviously I couldn’t use him to get down to the water) but he was EPIC!

We chilled on the beach for a while. It’s so gorgeous there. Then I slowly began my descent to the water…lots of rests en route, alerts from Bandit 😅 Then I sat in the sea & it was awesome.

The quicksand was crazy; the ground was all bouncy, Lyle couldn’t move for sinking hahaha, & when I crawled the suction subluxed my kneecap 😂😂😂

But when I was sat still in the middle of the stream, it was *bliss* 😍

Afterwards we dried off & had our picnic…totally great few hours!
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Totally worth all the pain I’m in now!

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I’m so excited rn 😃

We were talking tonight about my #bucketlist & decided that with next week’s budget, we’d book a night at the resort my parents often stay in nearby, & we’d do it for my birthday in October. It’s a truly beautiful place, they’re welcoming of ADs, & staying there would be a huge accomplishment for me!
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Now my parents had already said they’d booked a night in this area for my birthday. In fact they booked this when we fell out & didn’t speak for 4 months, which is pretty odd 😂

So I thought we could coincide with that. When I phoned my parents up to ask what dates they were coming up on, they said they’d pay for the lodge for us as my birthday present 😱 AND THEY DID!

So it’s officially booked & aaaagh I can’t wait, honestly! It’s like a holiday for when you’re too poorly to handle a holiday 😃 We haven’t had a night away from home in 7yrs, so this will be special 🙂

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.

Yesterday’s fun

Morning

All symptoms terrible today ow and why. Wet room people came round couldn’t cancel again, they were lovely will post about it later gonna go try survive this current crash.

Evening

Oof today has been a battle, I have been SO unwell 😂 Finally started to feel human waking up from my third nap at 6.30pm 😂 TW for food on next slides!
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So the company the council has paid to do the wet room came this morning. The guy was so lovely!

He gave us colour charts to pick, told us which ones most people were going for, then went up to measure stuff. The paper chart are the walls, & the squares of colours were the flooring choices!

He asked if we were happy with the plan we’d got in the post, which we were, & explained they couldn’t do the bathroom door opening inwards as the bathroom is too small and it’d hit the toilet! We picked our colours, which was stressful but badass 😂
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The company does a lot of specialist bathrooms for disabled people, so we’re in very good hands! They’re coming to do it at the end of this month (aaaagh! 😍) & it will take a week 😱😂 It’ll be hellishly stressful for me, but the company seems awesome & it will totally be worth it!

Some of the specialty stuff they do for nursing homes sounded incredible…like a bath with a chair that raises the person, lifts & holds the person over the full bath, then the bath LIFTS UP TO GO AROUND THE PERSON so the carer doesn’t have to bend over the tub!
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Gonna try for a little dog walk now. I was excited about taking Zeke the long way into town today, but I daredn’t push my body too far with how crap I’ve felt 😂

After walk

Teeny walkwheel done. Kinda fun, kinda awful. Bandit alerted to a seizure & was incredible, but my right wrist is knackered 😥

Here he is being a little star though!

Quick bit of seizure awareness –

Complex partial seizures are not what you typically see being portrayed in the media, although they’re actually the most common type of seizure. Did you know there are over 40 types of seizures?!

In CP seizures, the person is totally unaware of their actions or surroundings, & has no memory of the event afterwards. During the seizure they may continue an activity they were doing beforehand, such as walking or eating. They may fidget, pluck at clothing, laugh, talk nonsense etc. Afterwards there is usually a postictal phase, where the person is confused, disoriented, & may have trouble speaking.

My right shoulder has been extremely loose today, constantly slipping in & out with me eventually saying to Lyle there’s no point making sure it goes back in 😂 Dunno if it’s related to that or not but my wrist started KILLING on this walk, with no trigger…it hurts so bad, feels similar to a broken bone but definitely isn’t. Super ‘ugh’ though.