Thursday 8th August 2019

Welp my shoulder had been partially out for 2 days & that is why it had been so immensely painful πŸ™ƒπŸ˜‚

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 πŸ˜‚

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Alright heart rate calm tf down πŸ™„ 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 πŸ˜ƒ

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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 πŸ˜… 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 πŸ˜‚πŸ˜‚πŸ˜‚

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 πŸ˜ƒ

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 πŸ˜‚

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 πŸ˜ƒ We haven’t had a night away from home in 7yrs, so this will be special πŸ™‚

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Zeke is GO!!

ZEKE’S NEW BATTERIES WORK!!

Lyle’s officially a genius, as he was obviously the one who sorted it all out πŸ˜ƒπŸ˜†

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 πŸ™‚

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 πŸ˜ƒ

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 πŸ˜ƒ

Zeke the power chair!

Zeke is my electric wheelchair.

He is a second-hand wheelchair that we found for £100. This was just after amazon had scammed us for £475, & we were left waiting 7 working days for the refund to come through. Because we had NO money, a super generous awesome instagram friend bought Zeke for us 😭

We were told Zeke was being sold so cheap as he had a lilt to the left. My dad collected Zeke & pumped up his tyres to the correct pressure, and we’ve never noticed even a hint of a lilt!!

The only thing Zeke needed was new batteries. In his current condition, he goes from full charge to zero in less than 15mins πŸ˜‚

But they were Β£100, making Zeke possibly the cheapest electric wheelchair to ever be bought πŸ˜† Zeke’s new batteries should arrive tomorrow & I’m soooo excited!

I still won’t be able to access the damn town centre until I’ve tested that his batteries would last the long way into town (50mins compared to 10 if the scaffolding was accessible!!). But I can try him out properly on full size dog walks. Really hope getting the batteries switched over is easy!

I already love having Zeke in the house. He’s made doing all the pets possible, symptoms permitting I can go from pet to pet & handle/feed them on my own…Lyle supervises to make sure my hands are working & I don’t have a seizure, & he fills their water. First time in years I’ve been able to do the pets when I feel well enough, without them having to be brought to the bed πŸ™‚

Zeke also means I’m able to call the stairlift to get up to the bathroom myself, without Lyle having to get up to press it for me πŸ˜ƒ

GP appt, neurology referral, & the resulting mega crash

(Copied from instagram, posted 5.7.19)

Well the appt went probably as well as we could have hoped for? Which I’m especially glad for as if we’d needed to complain, our recording sucked because Lyle left the phone in his pocket πŸ˜‚
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Dr actually listened to everything, read our CCI info, I demonstrated some hypermobility. She’s sending a referral to neurology today, & is gonna send a referral to a neurosurgeon once she’s researched CCI & spoken w/ Dr Dick.

I mentioned how scared I was as I didn’t know how to prevent CCI getting worse whilst we wait for the referral (it’s looking like it would be over a year’s wait), & she literally just said “look I’m gonna be honest, I’m not sure” 😭 Expected but 😭

She wants routine bloods (every fucking timeπŸ˜‚), & in a week’s time we have to fill in referral forms for neurology, which is when we should know more about wait times.
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Went better than expected. There was no bullying, no blaming MH, no aggression. We’ve got referrals, although they will take a terrifyingly long time.

She was also baffled why neurology had dropped me, as was the duty GP who called earlier…like why wasn’t this picked up on?! Why has it taken until now for them to realise/tell me this?! πŸ™„

She mentioned epilepsy meds briefly (wanting my to go on them for seizures), but I explained it’s much more likely my seizures are related to ME, CCI & POTS. That’s when she talked about the referral to the neurosurgeon. Asked if we could afford private, obviously we said nope. So yeah!
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Turns out the surgery had only scanned 4/26 pages of our notes onto the system (they’d told us several times they’d done them all πŸ˜‘). The only notes on the system was a 1 page summary of CCI/explanation of the measurements, & 3 images of my MRI πŸ™„ No info on ME/symptoms/diagnosis, no info on my POTS or seizures. We took in 2 copies of those notes, fuck knows where they are. We have to phone reception & if they can’t find them, take them in AGAIN πŸ™„
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Lyle said this was the first appt I’d ever dealt with all the questions on my own, & seemed so ‘okay’. That’s what you get knowing you’re #actuallyautistic πŸ˜ƒ & going in not giving a shit.

(Copied from instagram, 7.7.19)

Oh good, I’m immensely unwell πŸ™„

Two horrifying options for what’s going on here – either I’m normal people sick on top of my usual sick (always a spoonie favourite πŸ™„), or I’ve triggered a really bad ME relapse. Yikes.

The big trigger for either of these would definitely have been all the NHS bullshit this past week 😭

I feel incredibly rotten, have a really sore throat, & a sneezey runny nose. This has happened maybe 3/4 times over the past 18 months, after visits from family/friends, where it was clearly an ME relapse. So we’ll just have to wait & see… πŸ˜₯

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I’m hella sick. Throat feels like I’m swallowing shards of glass, I’m having a ton of #seizures, & experiencing the most intense exhaustion. Felt a bit better earlier so went with Bandit & Lyle to the nearby field…my thinking was: I’m in a wheelchair, this can’t be too much! It almost killed me πŸ˜‚ I felt TERRIBLE. Bandit insisted on cuddling me lots, kissing my mouth & nose, and alerting to my breathing. Came home & slept for hours. Ready to be done with this thanks, whatever this is πŸ™ƒ

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Emailing specialists abroad πŸ₯

Lyle phoned up the GP surgery today to book my blood test (2 weeks wait πŸ™„).

He was treated like shit, then the receptionist hung up before he’d had chance to ask if my MRI forms had come through, or what had happened to the notes we took in that weren’t scanned onto the system (the GP asked us to get them on). Ugh πŸ™„

We might try to switch GP surgeries, but idk. Last time we were refused, & I have a GP here who (although had no knowledge) actually listened. Reasons for trying to switch would be: wait for GP appts (3-4 weeks, other surgeries are 1-3 days); staff have been atrocious (lying about symptoms, missing appts, refusing treatment), & the receptionists are useless. .
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I’m mega unwell πŸ™„ I’m having so many seizures every day, my pain and fatigue are high, & in addition I can’t breathe well. My heart feels like it’s skipping out and my vision is made up of seizure auras, floating shapes/pinpricks of light. I don’t know if I need urgent help, or if I’m okay πŸ€”

Lyle’s being a star whilst I’m scared…I keep thinking I’ve fucked up somewhere & my spine is getting worse fast πŸ˜₯ I haven’t done my PT exercises for a few days because we’re scared they’re not what I should be doing/could be making me worse…but without PT my neck can’t get stronger.

The PT is the missing link. We know from lectures that the US specialist has a 3 pronged attack to treat CCI & delay/avoid surgery – neck brace throughout the day, PT to strengthen, avoid further trauma. We just don’t know what the PT exercises are.

An old MRI is a big help!

* copied from my instagram

Well that trip out was very almost in vain πŸ˜‚ .
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We got to the hospital & nobody had any idea where we needed to go. Kept saying “where did they tell you to go on the phone” – “they didn’t, they just said come to the hospital”.
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Finally got directed to reception at the x-ray dept (a really lovely dr overheard us trying to find it & gave us directions – LOVE being reminded that not all #doctorsaredickheads!!!). The receptionist was initially REALLY rude, (even saying because my MRI was Jan 2018 they’d no longer have the results – welp, nobody ever gave me them, so great πŸ˜‚), but we just stayed super polite & accommodating. Eventually got given the consent form.
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Upon filling in the form we discovered I needed to show 2 forms of ID, which they hadn’t told us on the phone. Omg πŸ˜₯
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Back to the receptionist who said we’d need to come back in with the ID. Proceeded to tell her that not only was that hard because of my health, but also because the ID they accepted, I didn’t have…explained about my name change, that we had deed poll & bank statement, but she said those wouldn’t work. Second ‘πŸ˜₯’
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Got told to sit in the waiting room. Really nice lady chatted to Lyle & even me a little about PIP & what a nightmare the process is, how they refuse before an appeal etc etc. Receptionist comes back & tells us she can give us my MRI results today, no ID needed 😱
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Wait 10mins & she appears with a CD containing all my MRI report! πŸ˜ƒ Sure it says ‘miss’ on the front, despite being out to the NHS for 2yrs, but πŸ˜‚ Also the sign on the ward said that CDs of reports would cost Β£10, so I have no idea why that was a) given to us over a printout, or b) free πŸ˜‚

(please ignore the constant misgendering from the NHS, it is painful & annoying πŸ™„ )

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Something potentially *extremely* helpful has been gained by getting my MRI images! A friend I met through the CCI group has measured my CXA for me; to put it briefly 150-165 is normal range, 135 or less indicates CCI surgery criteria.

In January 2018 my CXA was around 133 degrees.

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Obviously this is not super accurate, this person is not a professional although they do help people with MRI measurements often. BUT, this gives us a tool to get drs to listen, & offer us all the help possible! We now have SOMETHING to get their attention, instead of having to rely on the symptoms I’m describing (which the NHS have always ignored). I feel even more hopeful about the phone appt on Monday now…

Finally, I LOOK LIKE A PISSED OFF PUG!!! πŸ˜‚πŸ˜‚πŸ˜‚

I’m in so much pain 😭 Lyle is snoring next to me & I’m exhausted but can’t sleep thanks to painsomnia…so unfair πŸ˜‚

Idk if my neck is having a particularly bad day, or if my shoulders are triggering all this pain OR if them being so screwy is affecting my neck too. They’re SUPER grindy, & my left shoulder has needed putting back in 3 times today (one time with a very audible click – our friend’s face as he heard it across the room πŸ˜‚).

I hurt so bad though & now I find any pain to do with my neck terrifying – is it getting worse, am I okay?! etc. Most of all I just wish I was sleeping cuddled up to Lyle rn πŸ™„

A handrail!

Copied from my instagram:

Yep, that happened πŸ˜‚πŸ˜Œ But hey our hand rail is here unexpectedly! No idea what it is or where it’s going, but πŸ˜…
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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 πŸ™„ 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!]

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 πŸ• 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 πŸ™„