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Recent NHS failings

  • On the 26th November we received a letter in the post saying I had an appt for an EEG *the next day*.

Great job guys 😑

There were also some huge issues with this appt ~ firstly, it gave me less than 24hrs notice, which is beyond ridiculous. According to the letter it was ready to be sent out in October!!! By the time I woke up & Lyle got the post, the phone line at the hospital was already shut.

2) I have never been told I would be having a sleep deprived EEG. It was agreed a sleep deprived EEG would be extremely dangerous for me, as missing sleep is one of the biggest triggers for my bipolar mania.

I was SUPPOSED to be having a 24hr EEG, which I found out about last June via letter. I haven’t heard anything since.

3) ME means I have to sleep/rest when I need to. I NEED to listen to my body, it’s taken me long enough to learn this!! Skipping sleep would make me immensely ill.

4) This hospital is supposed to have it on record that I can’t attend appts before 12pm…yet every appt they dole out seems to be between 9-10.30am 😑

Lyle phoned and left a message on the number provided. He cancelled the appt, explaining the letter only arrived today. He went on to explain that I was supposed to have a 24hr ambulatory EEG, not a sleep deprived EEG, as my health conditions mean that would be dangerous.

  • On the 29th November we received the exact same letter inviting me for a sleep deprived EEG, only the appt date was different.

They closely either hadn’t listened to our message, or had just entirely ignored it.

Lyle phoned up, left a bigger message, & asked someone to call back. Nobody did.

  • After having an amazing experience with PALS, we actually had a way forward to deal with appts. Due to a butt load of medical trauma & my autism, I struggle immensely with appts, & haven’t been able to attend any since summer.

PALS sorted it where I’d have several notes added to the system (these covered the fact I’m trans, explained it’s highly suspected I’m autistic & to bear this in mind, & to communicate with Lyle wherever possible), & advised Lyle to make a phone appt with my GP to sort out a verbal agreement of how the dr should behave.

This would cover not misgendering me, communicating via Lyle, giving me time to answer questions, and not blaming/mentioning mental health at appts for physical conditions.

Lyle booked a telephone appt; the dinner he could get was 2 weeks away.

I was stressing hugely on the lead up. I wrote a ton of notes, missed sleep, my depression got significantly worse, & we had several repetitive conversations about what Lyle would say, how he’d respond if the GP said this etc etc etc.

The day finally came, last Friday, & I was so excited to get it over with…

The GP didn’t ring 😑

  • Just prior to this, Lyle phoned up to book a physical appt (for after the verbal contract was set up). The soonest appt we could get was a month away!!

Even when I doing -100% of the appts I should ideally be doing for all my conditions, they still manage to constantly fuck everything up… 🙄

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Review: Tabby Fidgety Cat

What is it?

The Fidgety Cat is sold on Amazon, & primarily targeted at elderly dementia patients. It is a lightly weighted, soft, cat-shaped stuffed animal, and has added fidgetable parts on the back. There are several choices in colour, & there’s even a dog equivalent available!

Price?

£27.99

Thoughts…

I bought this as I’ve found weighted items particularly helpful, especially if they are soft or nice to the touch. Having the kitties settle on my lap is perfect, & I’ve taught my dog DPT, but none of those are really suitable for looong periods of time.

Enter Toshi, the tabby fidget cat 😂

On the description it only said “lightly waited “, with no weight given. Having weighted it myself, it sits at 325g.

The material is extremely soft & it’s a very cute kitty! It comes wearing a collar with a bell, which was velvet. I removed it due to my sensory issues with velvet, & found it was actually much nicer feeling without the collar.

There are large wooden beads to fiddle with, which I love, & three strands of ribbon. On the rump there’s a large plastic-y pocket, & kitty has a tail with weights in the tip.

I have found this very helpful so far. It’s cuddle-able, it’s nice to stroke or play with the ears, & the beads have been great for self stimulatory behaviour (eg when I’m trying to concentrate, or anxious).

I would prefer if it weighed closer to 1kg, so I may put something heavy in the pocket to add that little bit more weight…but otherwise this is fantastic 🙂

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So tired, can’t sleep

Fatigue immense. Body is trying to make my sleep pattern nocturnal & idk why…it usually happens in summer, so that’s weird.

I knit hats, so here are some pics as I’m too tired to type.

We’re being hit by a storm tomorrow, scared it’ll trigger a migraine (weather changes = huge trigger).

And that reminded me of the storm where we lost power for 4 days (no heating, lights, phone reception, transport). I dug out the pics, so might as well share them too…

This was the main road into town:

It was 6C indoors hence all the blankets haha. I have cold urticaria & am extremely sensitive to the cold!

I’m thinking about changing the name of this blog as I have so many physical conditions finally recognised now (which I had to fucking discover for myself, thanks NHS for leaving me struggling & in pain for years, whilst telling me it was all in my head 🙄)…not sure what to yet though 🤔

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Autumnal adventure!

The weather has finally cooled & today I’ve felt better than THE WORST, which is how I’ve been feeling for so long now…thank you autumn!! 😌

My mental healthhas also finally improved…I really hope this is here to stay!

Today we had SUCH a lovely trip out! We took the bus to the seaside town 10mins away, walked along the prom & the jetty, then walked to a nearby forest park.

We had the best time, & because the entire place (forest included!) was wheelchair accessible, I got to save my energy! I enjoyed the day a lot more as a result, & was able to self propel more than usual 😊

Good days are rare, & so worth cherishing! 😊

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People can’t understand

We had a friend stay recently, for two nights.

It was VERY hard on me.

Dealing with pain, & trying to hide it, around a stranger to the house (I’ve known this person for years, but I’m not comfortable around anyone but my partner) is hell. Fighting fatigue & pushing my body waaay past it’s limits, for two days in a row, is soul destroying. Feeling the toll that leaving the house for a few hours has on your body, & seeing how easily other people take it in their stride & how they don’t realise the effect it’s had on you, is upsetting.

It’s just hard.

Healthy people take so much for granted, which is normal…but it causes problems when I’m feeling very ill, & they can’t empathise or imagine what it’s like.

It’s SO HARD to get people to understand what a life with disability/chronic illness is like.

You are dealing with symptoms & pain 24/7. Your conditions are always a hundred times worse on the inside than what other people see on the outside.

Seizures are not just ‘spacing out’ for a minute; they’re feeling lost, not being able to think straight, feeling anxious & exhausted.

POTS bringing my heart rate to 170 when I stand isn’t ‘just’ a high heart rate; it’s struggling to breathe, feeling dizzy, feeling nauseous, feeling weak, having seizures.

A migraine isn’t just a headache; it’s immense pain that triples everytime you move, & light or sound is like a knife in your head.

Subluxed joints aren’t just ‘oops a joint popped out!’; it’s a lot of pain, anxiety, and fear of when the next will happen – it’s loose joints throbbing & aching all day long.

I look fine on the outside, so it’s hard for my friends & family to understand how badly I feel, all the time. I put on a front, I hide the pain. I try so hard to get to enjoy the odd day out, & then I pay for it viciously afterwards…I had two migraines in the three days our friend was here, & yesterday (the day after he’d left) I was in bed all day due to extreme pain & fatigue. Today I’m struggling too.

It’s hard feeling like nobody understands you, alongside fighting doctors & constantly having to prove how sick you are.

It would nice just to be believed & supported.

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New ideas

Hey all.

Currently feeling very unwell as the weather is super hot again today, & I have an awful headache due to POTS making my blood pressure jump like crazy…I’m hoping eating will settle this, but when you have intense nausea it’s hard to force yourself to eat 😥

Anyway, I gave my about page a much needed update! You can check it out here!

I’m also toying with the idea of doing a podcast 🤔 Basically it world just be me prattling about whatever I like haha – my conditions, the NHS, my pets, hobbies etc. I’m kinda excited, & like the idea that I’ll be able to do it from my bed – vital for a spoonie HAHAHA!

Oooh I smell food coming…