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 💙

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.

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!! 😱

Good news from the NHS?!?

(Copied from instagram, 22.7.19)

A REALLY GOOD MEDICAL UPDATE 😭 I’m so overwhelmed rn!
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Quick recap – we had an appt booked with Dr Z this Thursday (blood result & hEDS referral), & Lyle was waiting for a call back from reception to let him know when Dr H (head doc who repeatedly didn’t call us for appts) was in to talk with. He’s the only one who will diagnose ME, which is why we’re still bothering with him. Dr W is my assigned Dr & the 💩 who, months ago, wrote that I was “housebound due to anxiety”, strung us along for ME stuff, then left us with a CBT referral 😡
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Today Dr Z phoned unexpectedly. She’d been researching CCI to try find places to help or info on how to stop it getting worse whilst I wait for neurology next March. She found nothing. She tried to speak with Dr H, but couldn’t contact him (same, same 😂😅). She spoke with Dr W (me & Lyle both looking at each other like ugh)& he mentioned the iMSK clinics – a local integrated musculo-skeletal service. Because it’s a fairly new service in our area wait times are extremely short in comparison. They have PTs, can refer for MRIs, & also have contact with neurologist, neurosurgeons etc 😱😱😱
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So where previously I was having to wait until March 2020 to see the neurologist (who wouldn’t know about CCI), just to simply get the referral for the 2 specific MRIs I need…now I should get a much sooner appt with a specialist in musculo-skeletal issues! They can refer me for the MRIs, & should also be able to appoint a hEDS-competent PT! 😱😭 THIS IS SUCH GOOD NEWS!!! It also meant I was able to cancel the appt this week (less stress yay!), although we had a pre-scheduled appt with Dr W on the 30th, unbeknownst to us. Not sure whether to keep that & give him a second chance, as iMSK was his idea 🤔
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Wow it feels like EVERYTHING is coming together! And I’m so exhausted from crying but so happy!!!

Ready to explore hEDS

(Copied from instagram)

We’re in the process of gathering information on diagnosing hypermobile ehlers danlos syndrome, using the updated diagnostic criteria. This is ready to present my GP with everything she needs for our EDS appt.

The aim of this appt is to get a referral a- for a diagnosis of hEDS(/HSD, though I should meet hEDS) & b- to an EDS knowledgeable PT! With CCI that is crucial, as bending my neck the wrong way can cause severe permanent damage 🙃
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It should be pretty easy to demonstrate. I’ve highlighted how many points each section requires, how many I meet, & have photos demonstrating what I can.

I like photos for several reasons – 1) the dr can absorb them outside of the very short appt time, 2) it prevents me forgetting/getting flustered on the day, & 3) there are some I’m not able to demonstrate. The knees require me to stand, for example, & after each photo I had to slump to the floor, battling to breathe & having seizures. It would be unhelpful to demonstrate that at an appt, as my ability to think clearly & speak after a seizure is heavily effected, & obviously I need to be on the ball!
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From what I’ve researched & read/spoken with other spoonies with hEDS or HSD, NHS treatment or knowledge is…patchy, at best 😂 Getting help & getting drs to listen seems to be extremely difficult, so as usual I’m making sure I’m prepared!

Today has been a rest day, until the evening when I showered & joined Bandit on a 15min walk 🙂

Pain had been fairly low up until that point, but now I’m in agony 😭

I’m very PEMy atm, which is why it’s been a quiet day.

Enjoy the pic of freshly cleaned Lyle 😍 When I shower he showers, as he gets soaked helping me anyway hahaha!
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Waiting 9 months for an MRI – will I live that long?!

(Copied from instagram, both posted 11.7.19)

Well, that’s ridiculous.

We were supposed to be getting a list of hospitals & their wait times, then we’d fill out a form for the shortest wait (our friend said he’d drive us). Instead what we found was an appt already assigned to me, at a hospital that is miles away, & the appt is for the end of March next year 🙄

I do like that immediately underneath it mentions the 18 week period you should be seen in, fucking useless arseholes 😂

Idk if we should just accept this appt, & try utilise PALS to speed it up, or if we should try work out who to contact to get the forms & info our GP said we would get 😕

I’m too tired for this shit. We’re also pretty sure I’m going into a proper depressive bipolar episode, it’s been raising its ugly head these last few days. This was obviously triggered by the ‘mad NHS week’ & the following flare. It’s the worst timed & least needed thing ever, I’m basically feeling terrible in every way rn 🙄

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Today has been utterly exhausting 😕

But we got some good (?) news today. Lyle got the number for an appts line by calling the surgery. The person he spoke with there said it was THE GP had chosen this hospital. Whuuuut? 🙄

We explained everything to him, & he advised us to phone our GP surgery,. We should explain we wanted to choose the hospital, & also ask that my GP write a letter of urgency for my neurologist referral. With that, they’ll speed up my referral & might even try keep it below 18 weeks. Why tf didn’t Dr Z do this from the get go?! 🙄
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So Lyle called the surgery. Before he even MENTIONED the appts guy, he was just going over my case, the receptionist had asked if Dr Z could not do a letter of urgency for my referral 🙄 She said she’d sort it.

We have no time frame for any of this. So even though this was (potentially, hopefully) a really good thing, all the uncertainty meant I fell down the rabbit hole…my brain couldn’t deal with recent stress, complete lack of time frame, & my current level of symptoms. This resulted in a huge autistic meltdown. I lost hours the meltdown tsunami. I still feel very broken/fragile 😥
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In terms of autism, some of my biggest difficulties are when things don’t have a time frame, are uncertain, or don’t happen when we’ve been told they will…it feels like the entirety of the NHS revolves all these things 😂

For an autistic peep who finds that immensely difficult…interaction with the NHS is incredibly damaging to me. I’m glad I know I’m autistic now…so I know *why* I struggle with things like this in the world…but ugh it’s very hard.