disability, Disabled, wheelchair

The future! [part 1]


Well, kinda big news kinda not. But it feels big to us 🙂 This is hopefully where we’re going to live in a few years time!

We won’t be looking for about 18 months, but we’re excited 😊

There are lots of reasons for this move:

1. This place is amazingly wheelchair accessible – wide curbs, dips, ramps etc 😍
2. It has 8 GP surgeries (where we live now there’s two; 1 isn’t wheelchair accessible, both are atrocious – my surgery has a 2-3 week wait for *emergency* appts)
3. The local hospital is really good (it’s where I saw my only neurologist & we travelled that far due to the short wait). There are shorter wait lists, specialists that aren’t available here, really good patient ratings, & official reports are much better than the local hospital
4. Rent is £100-150 cheaper a month than here 😜
5. We could move into a ground floor flat (currently there are half a dozen steps into our house) & wouldn’t have to worry about adaptations to the property
6. Our current area is very wheelchair inaccessible, which means every trip out involves bumps/bangs which is very bad for my neck!
7. This new place has everything we’d need in close proximity, with no need for travel – huge 24hr supermarket (😍), all shops, vets, cinema, places to eat, takeaways etc. Sounds silly, but we have to travel for any activities here, which is painful for me & an additional expense. We can’t even get taxis!

So, it’s hugely positive!

The reason we’re waiting so long is so we can try sort out everything that’s currently ongoing 😥

I can get my private scans & we’ll still have a year or so to rebuild funds. I can get my CCI diagnosis. We can wrap up all the loose ends in the NHS (rheumatology, ME, neurology). We can sort out PIP. We also need to gather evidence for the council to allow us to leave this property (we’re supposed to stay 5yrs after mods, but we had no idea of CCI at the time), so the more evidence we have the better.

Anyway it was a really exciting day for us 🙂

We planned for a future I very much might not have, but it’s left us so happy & looking forward with hope! ❤️

craniocervical instability, medical trauma, myalgic encephalomyelitis, NHS

NHS fail & high pain

Received an NHS letter today:

Uhuh okay, good one NHS…maybe if you’d actually told us about this appt IN ANY WAY, we would’ve attended?! 🙄

We received no letter, no text, no email…just this letter today saying we DNA. Oh , this again. Thanks NHS, always fun!
Also if they got me an appt so soon, that means they expedited it, as the spinal specialist was supposed to have months & months of waiting…I hope they can speed it along again, given this was in no way our fault 🙄

And secondly…last night I was battling such PEM & pain after 2 small days out (rest day in between) 😥

I really hope I get offered some decent pain relief soon. I can’t cope when my pain hits such intense levels, & cocodamol & ice barely touch it.

craniocervical instability, iMSK, medical trauma, NHS, seizures

How do I get help if not from the NHS?

Today I woke up with incredibly blurred vision, absolutely zero taste (haven’t had more than about 30% taste in over a week), but the scariest is my vision movement…it feels ‘glitchy’, jerky. It blurs & jerks when I turn my head or move my eyes, which makes talking whilst moving my eyes extremely difficult & walking extremely dangerous!

The world is out of focus & ‘whooshy’ too, my vision/brain just feels really messed up. Nothing feels real & I feel like I’m constantly on the verge of a seizure.

So obviously this is terrifying, & we’re once again trying to work out of there’s anywhere we could go for medical help (there isn’t), if it’s worth going to A&E, or what we can try ourselves…

Trying traction. Scared enough by recent times to try it & hope it doesn’t result in my death 😂😥

[Few hours later]

If we try traction again…I’ll make sure we lower the height & take the brace off slooowly 😂😱

I’m doing slightly better in terms of movement & vision, so I guess we’ll not bother trying to get medical help today.

Our options were pretty useless anyway: phone 111 (= get ambulance called); go to A&E (= no help, add to medica trauma, & huge increase in pain, PEM, seizures due to lighting); phone iMSK (= come across as annoying/needy, no help is given anyway).

This is why we seriously need to get my private upright MRIs done though.

It won’t bring much forth in terms of help, but I’ll know the extent of the damage & will have a diagnosis (which will possibly make seeing NHS professionals/going to A&E easier).

All I have currently are my measurements from my Jan 18 MRI (which NO professionals I’ve seen so far has had any knowledge/understanding of, & lets not forget the NHS read that as normal 😱), & no diagnosis.

The NHS doesn’t know what to do with me, nor are they putting any real effort in to help.

I’m on two waiting lists; one 9 months long to see a neurologist (idk why…) & the other to see an NHS spinal specialist. We STILL haven’t received this appt from the iMSK yet. And that’s the appt I need to attend *before* the NHS will refer me for *any* MRIs.

So if I was relying solely on the NHS it’d be over a year just to get some MRIs, & they also wouldn’t get me the upright MRIs needed.

Like…how is the NHS so useless?! 🙄 .

Also iMSK STILL hasn’t sent us any notes – my appt was 5 weeks ago 😑

They haven’t sent out the ‘summary’ notes they “automatically” send out after appts, or the notes we filled in a form & sent ID in for…when we requested my notes they said they had up to a month to get them to us; it’s been 3.5 weeks so we can chase them up soon!

craniocervical instability, dysautonomia, ehlers danlos syndrome, iMSK, myalgic encephalomyelitis, NHS

Ring ring

Lyle phoned iMSK today.

We didn’t want a sooner appt (I really need some time to decompress) but we needed to update them on symptoms. The receptionist tried to be arsey about speaking to me initially (I was NOT well enough!!), but we knew if they logged into the system there was a note that says I give permission to talk to Lyle.
We reported lost height, intense exhaustion, bad headache, & worsening POTS.

IMSK were really shocked by my symptoms, which was weird, & frantically trying to work out what to do. Said “have you thought about seeing the GP?”, & Lyle just said “the GP is refusing to see us for issues like this, & sending all similar issues (ME, POTS, pain) to iMSK. Plus even an urgent appt has a few weeks’ wait” 😂🙄

So iMSK are emailing my PT to try fit in a phonecall, & my appt is still 8 days away. At least we’ve kept them up to date now, & it’s not our fault if I die/something has gone horribly wrong 🙃

Woke up with such intense ME symptoms today, & my old heavy headache. This makes me so sad. And scared…but the fear is always there.


[Post from yesterday]

Since my mega pain episode I’ve been waking up with severe ME symptoms that haven’t happened in about 3 months.

I wake up feeling beyond exhausted, unable to think, blurred vision, & with a moderately bad ‘heavy’ dull headache…all this lasts 1-3hrs.

None of this had happened to this extent first thing in the morning in so long, my spirit feels crushed that it is back.

My POTS is also much worse…not quite ‘stood up = 170bpm’ levels, but I’m finding even tiny movement (such as reaching for something) leaving my heart hammering, out of breath, seizures etc, which again had totally changed with CCI management. My fatigue is WAY up too.
I’m scared I won’t be able to get back to the levels we were at. I really didn’t need symptoms getting worse, I’m so tired of all this. We still have no idea what physically happened to my neck during the nap to cause all this…the fear is real 😥

bipolar disorder, craniocervical instability, seizures

Black hole

I’m so tired of fighting everything.

I’m exhausted from ME, CCI & the pain/seizures anyway…then I’m further destroyed by having to fight the constant terror over my health, the NHS, benefits, my autie brain.

I’m so entirely fed up with this life.

I miss my life from before we knew about hEDS, before CCI or seizures. When I could do almost any activity, hike, game, talk, travel, take care of my pets.

I’m tired of having a dozen seizures a day, of wearing a neck brace that causes pain & means I can’t look around & people stare. Of not knowing if I’ll go to sleep & not wake up.

I’m extremely tired of how stressful this is for Lyle. How much he has to do, & how he has to fight institutions *endlessly* for me. I want to give up.

I gained half a cm back in the night, so I ‘only’ lost 1.5cm 🙄 Lyle ordered a soft brace that I’ll be able to sleep in (to try prevent further damage done in my sleep) which should arrive today.

Naps/sleep frequently caused huge pain & symptom spikes when I first started having seizures (late 2016?) which I guess was worsening CCI years before we knew I had it (MRI that showed CCI was from Jan 2018). Sleep has always been problematic, we just weren’t made aware how much until my big pain episode recently. Hopefully this collar will help.

I’m such a downer currently 🙃

craniocervical instability, ehlers danlos syndrome, myalgic encephalomyelitis

CCI super scare


I’ve lost 2cm of height since my 2 days of intense pain – wtf does that mean?!

We measure my height pretty regularly as since getting CCI I’ve lost 1.5 inches. Black line was accurate for all recent measuring, purple indicates tonight.

We measured me because one brace felt too high that previously didn’t, & my second brace had to be lowered 1 notch in height (which we’ve never had to do before). This has only been an issue the last two days.

Measured me tonight & sure enough I’ve lost 2cm.

We dk what to do with this, at all. I’m so fed up of all this; the terror, the awful surprises, the lack of help… 😭😭😭

We posted on a CCI group…dk what to do!!