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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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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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Excel G Lite Pro wheelchair review

As someone needing a wheelchair for the first time in their life, I had no idea where to start. For weeks all my internet history was me searching the lightest, most durable, and cheapest wheelchairs in the UK. And I quickly became aware there are very few in depth wheelchair reviews out there 😂

My first wheelchair was bought when benefits were messing us about and we had no income. With asking my parents to pay us some money they owed back, we were able to buy an extremely cheap wheelchair. Say hello to the dark destroyer, who cost £59:

DD was pretty damn crucial in paving the way to us getting out the house again.

DD taught me that a wheelchair saved me pain & energy on days that I otherwise wouldn’t be able to manage. It showed us how much a chair helped in terms of my safety. But there were huge drawbacks with DD, too –

  • It was so heavy I could only self propel a few feet unless we were on optimal flooring (the shiny, hard supermarket floor!)
  • We removed the footrests to make the hefty beast lighter, but due to the bad design that left annoying spiky bits of metal that everybody kept catching themself on!!
  • It was very cumbersome & hard to move; Lyle really struggled to push me on anything but the flattest surfaces & getting me over curbs was out of the question

Introducing the Excel G Lite Pro wheelchair

This was my big purchase when two different benefits paid us a total of 18 months back payment 😉

The excel G cost us £229, and it’s a work of art. There is *so* little wrong with this beauty!

For starters, he (yes, I’ve named my chair & given it a gender 😆) weighs just 7kg. 7kg.

The difference between the weight of this chair and my last is mind blowing. I can lift Raptor with ease. He can also be tipped (for getting over steps or curbs) SO easily. We tried to illustrate that in this video:

In addition, the wheels sit much further forwards and the chair’s seat is almost at the same height as the wheel. That means it’s extremely comfortable to self propel, & takes much less energy to move myself.

With my last chair, when I pushed myself I had to bend my shoulders way back & stick my elbows right out. For someone with hypermobile joints and generic chronic pain, this isn’t good 😅 Here I am pushing DD

And here I am pushing Raptor 😍

The other thing I should mention is comfort. Not only is the padding that comes with this chair comfortable, but you can raise/lower the arm rests, and the footrests.

The fact the arm rests go down means the chair is designed to fit under tables & desks. For safety, the chair has a seatbelt which fastens around the waist, & breaks to lock each rear wheel. If you have somebody pushing the chair, there are rear pedals for them to push down on to aid in tipping the chair to get over steps/curbs/potholes.

Finally, let’s cover how easy it is to transport the chair. The chair folds in the usual fashion; you hoik the sides & it folds in on itself, to probably less than half the width. In addition though (& this is really cool for fitting in small cars), each wheel pops off with one push off a button!

The one negative I can even come up with in regards to this chair, is its width. The chair comes in 3 different seat widths. I got the 18″ seat, which is the same as my last chair – however the Excel G Lite Pro is wider overall. My other chair can fit through my front door, this one can’t. It can fit through my kitchen door though.

Not much of an issue, but worth mentioning 🙂

In conclusion, this chair is AMAZING!

For a fairly- cheap-but-good wheelchair, I cannot recommend this enough.

It’s bIggest attribute has to be it’s weight, or lack thereof. I struggled to find ANY chairs that were even within 2kg of this chair’s weight, & feeling the difference in person in terms of ease of movement, its incredible.

But aside from the lightness, this chair feels like it was designed by someone who understands what people need/want from a wheelchair. So far, I cannot fault it, & this is the best £229 I’ve ever spent 😂

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Good day plz?

My parents are nana are coming up today, to celebrate my birthday early.

For me it’s gonna be a big day out – 5 hours of being out in the world; eating lunch out and visiting museums. 

Yesterday I was suffering for pushing myself too far the day before. And by pushing myself, I mean and I went out for a few hours in the afternoon, then in the evening spent 3 hours researching epilepsy medication and taking notes…that was way too much, and I paid for it dearly 😅 I went to bed exhausted with a headache, woke up midway through the night with a migraine, and woke up in the morning with a migraine too!

Spent all day yesterday up until 5pm sleeping, but finally felt better in the evening and managed a short dog walk.

Hoping today will be a good day out…fingers crossed for no pain, not too many seizures, and that I don’t end up paying for it tomorrow!!

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Too much, too much!!

We’ve had a few busy days recently, beginning with my parents visiting at the weekend and journeying to a zoo.

The busyness caught up with me, and for the last few days I’ve just felt so physically exhausted. One day I didn’t leave bed other than to go to the loo. I have been SO TIRED.

For years I would’ve fought against this, called myself lazy, and been filled with self-hatred. But I’ve learned that when you’re chronically ill / disabled, you HAVE to listen to your body. Self care is not selfish! If you need a day of rest, you need a day of rest. If you need an entire day in bed recovering, do it!!

Today I woke up feeling energised, but I pushed myself too much. I ended up having to come home from a day out early, I had a seizure and fell (and have a cracking bruise on my head now), and we had to cancel plans with family. I rushed back into activity too soon, but I’ll learn from this and take it slower next time.

Point of this post? I dunno. Listen to your body, fight the stigma of others thinking you’re lazy, and do what YOU need to do.

ouch