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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9th August 2019

I’m falling apart, I swear idk if my joints have ever been this bad.

Wrists = agony, shoulders = agony, one hip is being a twat & my fingers are awful too. All my joints ache & pain is immense.

Can’t cope with my phone or Xbox controller, can’t eat with cutlery, can’t hold a drink. Ugh. Trying wrist bands to lower pain.

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Went on a small dog walk today but had an autistic meltdown, Lyle realised it was ongoing fallout from him being ill last night…I always struggle with him being poorly & knowing what I should be doing. That sucked, although Bandit was awesome…peep him alerting post meltdown.

Got a letter asking me to answer a survey on the ambulance service that helped us avoid A&E last month…the only thing I could positively rate the NHS on currently 😂 May be quiet today as Lyle has had to type this for me!

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Check out this storm!! 😱

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 🙂

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.

Zeke is GO!!

ZEKE’S NEW BATTERIES WORK!!

Lyle’s officially a genius, as he was obviously the one who sorted it all out 😃😆

This was our first time getting to do a proper hike with him, & see how much he’ll enhance my life. It’s A LOT! 😍

This felt amazing. Being able to have that little bit of independence in deciding where I wanted to go, being able to be *beside* Lyle & talk easily, be able to adventure without feeling like a burden or that Lyle doesn’t want to do this as it’s a lot of effort & he already does so much…it was amaaazing 🙂

Zeke is a powerful beast. We took him on two VERY steep hills & he made them look easy on half power!! We were out over an hour and his battery level went down 1 bar out of 5 😃

Tomorrow we’re going to go the long way into town, which takes about an hour & involves a SUPER steep hill!! Then we can go around the supermarket TOGETHER, without Lyle having to push & do it all. I’m excited 😃

Hedgehog

Today we found a friend in need on a dog walk.

A hedgehog was being pestered by a cat, so we went over to check the little guy out. He’s very skinny & weak, with a URI, so we brought him home.

We treated him for parasites (hedgehog friendly treatment – we’ve had rescued African Pygmy’s in the past), offered him food & water, & he’ll spend the weekend with us until the place our vet surgery gave us the number for opens on Monday.

Poor guy was starving!

We gave him high quality wet dog food with additional water (for fluids as he seems very dehydrated). His staple will be cat food & bugs until he goes, but the wet dog food did a great job of getting food & fluids into him 😉

Finally got my GP notes

Copied from instagram

Stressed, depressed & exhausted 👍

My fatigue is immense. My mood is pretty damn low, purely because I can’t take a breather from NHS. Even if I stop trying to get my notes, I have a blood test in two days, a GP appt a week later, & am fretting about the referral. I’m overwhelmed & exhausted…this is why I avoid the NHS as much as possible, because it just breaks me. Autie brain + medical ptsd = absolutely fucked.
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Nothing big has happened w/ the NHS, but autism doesn’t care about that. Phoned up the GP surgery to check our notes were printed before heading in to a) collect them & b) get our stack of notes scanned onto the system whilst we wait. And they haven’t been done, plus receptionist now saying they need to get Dr Zs permission. She said they’ll “hopefully” be done by the end of today. This has gone from being told they’d be there to pick up Monday morning (last Friday), to being told on Monday morning they’d be ready Monday evening & they’d call us to let us know (they didn’t, they weren’t), & now the story’s changed again.

The deadline constantly shifting plus staff repeatedly lying is a huge autie trigger, I can’t fucking deal when a plan gets changed 🙄

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Went into the GP surgery to fill in a form for an online service where you can make appts & see some of your notes. Whaddaya know, literally an hour after we signed up for this, the surgery rang saying my notes had been printed & were ready to collect 😂

We have them now, they’re actually way better than we expected…there’s a lot of detail, & no blaming of all my issues on MH like how the last dr did. There’s a decent chunk on seizures, CCI, & admittance that she doesn’t know anything about the condition. Muuuch better than I expected 😌

Usually these are only a paragraph long ime, so she did go above & beyond. I’m even happy with it being titled epilepsy, as it shows she’s taking my seizures seriously & mh is no longer being (repeatedly 🙄) blamed. There’s misgendering, I corrected the easy ones…but the NHS do nothing but misgender me, so…

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After being at the surgery I was feeling very autie scrambled.

I felt a ‘need’ for a soft stim (I hadn’t realised/thought about the fact I have different stimming needs before). So we went to a shop & I found the PERFECT soft stim mouse, who we’ve named Humphrey.

Lyle said as soon as I found him & began stimming, my whole outlook changed & I seemed much happier…so weird because I had 2 other fidget stims on me, but my brain was screaming “SOFT!!!” 😂

We had a picnic on the canal. Lyle bought mango slices so I could use the tub as a cup, because the bottle was way too heavy for me to manage 😂 When we got back we took Bandit to the park for 15mins, & now I’m in bed utterly exhausted!!

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Bonus photos from the last few days.