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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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Things have been difficult, but I am back!

An angry update against the NHS 😉

I first went to see a GP about my seizures last summer.

I saw an awful old witch of a Dr, who spent the 10min appt glaring at the scars from decade-old self harm on my arm, saying my seizures just looked like I was watching TV, & asking repeatedly about my mental health.

We later found that on the neurology referral this Dr had already said I was having “psychogenic seizures” (that is, triggered by emotion, stress, mental illness – we’d told her my emotions didn’t affect my seizures, of course). She also mentioned in the referral that I had self harm scars in full view (it was summer, I was wearing a t-shirt due to the heat!!), & referred to my seizures as “funny turns”.

Since then, when discussing my seizures with *every* GP, it was a battle to remind them my seizures weren’t diagnosed as ‘psychogenic’. I had one GP tell me numerous times “psychogenic seizures aren’t voluntary, it’s a fight or flight response”, “you can’t help it, you’re not doing it on purpose”, & she wanted to refer me to a psychologist to help me overcome “past trauma” that was triggering these ‘episodes’.

I wanted to scream!

STOP INSISTING THEY’RE PSYCHOGENIC SEIZURES, ESPECIALLY WHEN YOU LITERALLY JUST ADMITTED YOU KNOW NOTHING ABOUT MH. STFU!

My neurologist was the only one who was respectful. She wasn’t happy at all with how long I’d had to wait, that I’d been left alone like this, & that the GPs had jumped to psychogenic seizures.

In the year-long wait it took to get an EEG, I discovered that I had POTS. That is, Postural Orthostatic Tachycardia Syndrome.

And hey, what do you know, there’s an entire bracket of non epileptic seizures that was overlooked simply because I have bipolar disorder!! Physiological non epileptic seizures, triggered by conditions that cause physical changes – usually blood pressure, oxygen to the brain, or blood sugar…OH HELLO POTS!!

(this is my hr when I stand up)

After being told, repeatedly, that my seizures were ‘all in my head’, & that my mh is the cause, it turns out they’re triggered by a physical condition. And once again I had to discover that myself, because the NHS missed it completely. They were too busy blaming my bipolar disorder for everything 🙄

All the symptoms I’d been to the Dr’s about (heart palpitations & dizziness first, in 2010), I was told were caused by my mental illness. I’ve been getting sicker & sicker, and nobody would listen or take me seriously…I have a mental illness, obviously that means I’m immune to physical conditions?!

This way of thinking is absolutely not okay!!!

I shouldn’t HAVE to research & diagnose all my fucking conditions. I shouldn’t have to find ways to prove them to Dr’s at appts…Dr’s who then become so worried, because my HR is so high when I’m just sat in a chair, that they push me for an emergency ECG in case my life is in danger!!

We can’t keep blaming any and all symptoms on MH, simply because the person has a diagnosed mental health condition/s. I’ve been left totally alone with zero support for my seizures (dozens every single day) for over a year. My life crumbled to nothing. I’ve had falls, black eyes, bruises, dislocated fingers in falls…and it was blamed on my MH, it was blamed on me!

Now I know I have Postural Orthostatic Tachycardia Syndrome, my life has actually improved. I know why my seizures happen, & although I can’t prevent them, I’m able to go out and enjoy more because I have a wheelchair now. For the first time in years I can be around light, I can go to museums, I can eat out. The wheelchair keeps my heart rate lower than if I was standing/walking, it allows me to rest when needed, & if I have a seizure because my HR gets too high, I can’t fall. It’s AMAZING, and it all got missed.

For a year I couldn’t go out, socialise, go shopping. I haven’t been able to go to the cinema since 2015. I was living in darkness, because we thought it was the light triggering my seizures – think about it, when you’re around lights (sunlight through trees, fluorescent lights, flashing lights), you’re outside, which means you’re standing & walking. Which meant I was having seizures. I’m also more photosensitive due to my POTS, so we weren’t that far off the mark.

For over a year I didn’t go anywhere, I sat in the dark…and I was left like that! Because the NHS jumped immediately to psychogenic seizures, because I have a mh condition. I missed out on a year of my life!

Yes, I am pissed off. No, this isn’t okay.

Thank god me and Lyle are strong, are resilient, & have found a way to make life liveable!

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Still waiting

Not much to report, things are the same.

I still don’t have my MRI results. It was almost 4 weeks ago now 🙄

When we phoned PIP on the 6th week (originally we were told we’d have an updated decision in 3), the person we spoke to said “what I’d advise you do is call again at the end of March if you haven’t heard anything”…😱😱😱 That would be twelve weeks!!!! 😡 So I think we’re going to phone them weekly just to try to annoy them into acting faster 🙄

And I haven’t heard about an appt for my EEG yet, despite the two referrals my neurologist sent 🙄

So.

I continue to have way too many seizures everyday, alongside battling chronic pain and bipolar disorder. I’ve been hiding inside, either not going out at all, or going out for 15-30 minute walks to enjoy the snow🙂

Because I haven’t really been going out, my seizures have been sitting at an average of 15 a day, but a few days back I had my lowest seizure day in about 10 months: 8 seizures in an entire day 😃

And that’s pretty much where we’re at.

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12+ months to 2 days

Someone in the US got in touch with me yesterday. A few days ago they had their first seizure, ever, and were looking for support & advice.

Within two days of her first seizure she’d had a CT scan and an EEG. She was diagnosed with complex partial seizures (the same type they think I have) and will be starting meds.

All this within two days of her first seizure!

In contrast, next month will mark a year since my first appt with a GP about seizures. I was treated disgustingly, had to fight to get on the waiting list for a neurologist, and was told it would be a 12+ month wait.

I ended up in A&E due to seizures last October, which was actually kind of a good thing as it expedited my neurology appt, & I saw her 1.5 months later. I had my MRI 3 weeks ago, and am waiting for an EEG (my neuro’s sent off 2 referrals, but the local hospital isn’t acting on them).

The reason I’m posting this is because I’m so sick of abled people not understanding what a hideous monster the NHS is, and how disgusting it is. This person had two seizures total, I’m having over 300 a month and have had no support or treatment yet.

Whenever I try explain my hatred for the NHS, ableds ALWAYS bring up ‘yeah but the NHS is free and you have to pay loads in the US, so it is better’…my dad is TERRIBLE for this.

Firstly, you can say that because you don’t have a condition that puts your life in danger every single day, that you’re not being listened to or given treatment for.

And secondly – just because I complain about the NHS doesn’t mean I want rid, or would rather pay for healthcare. That’s not the only two options there are (shit free healthcare or awesome healthcare you pay loads for). How about an NHS that gets more funding, where treatment is faster and Dr’s care + are educated? Where instead of waiting 12+ months, everything was sorted in 4-6?

That shouldn’t be too much to ask for.

I know quite a few spoonies in Canada. One has suspected simple partial seizures, and is setting a neuro, having an EEG & MRI within 2 months of their 1st appt. Their healthcare is free and so very much better than ours.

It’s not an either-or, it’s a ‘the NHS needs improving because this isn’t okay’…and frankly, if you think it is good enough as it is, because you don’t have a disability, you’re just ignorant & ableist.

I am so SO tired of living with so many seizures. I’m so desperate for help from the NHS, yet I just keep getting treated like shit.

And when people try argue that UK spoonies have it good with the NHS…I just can’t.

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Broken

I had another broken day today 🙄

Yesterday we tried to have a nice day, it was an epic fail…I almost ended up in hospital due to having so many seizures, the day was awful & very much ruined. I was left asking myself why I even try to do anything/leave the house anymore 🙄

Being so physically unwell obviously takes a toll mentally, and after yesterday, today I’ve just been struggling hugely. I wanted to hurt myself, I felt suicidal, same old bipolar crap. Add to that a pet died unexpectedly and my bf’s parents are being absolute dicks…and yeah, it’s been a bad day.

I started to feel a little bit better this evening. I just get tired of all my disabilities have taken from me. I get tired of not being able to leave the house, or have a life, and yesterday showed that so clearly.

I posted this photo yesterday online. This was me after I’d attempted to leave the house; I’d had 29 seizures, felt dreadful, and a migraine had hit me as a result of the high number of seizures. I might have an invisible disability, but that doesn’t make it any less real…

I can’t remember if I posted about this already or not (I have no memory anymore, my brain can’t really produce new memories very well) but my bf called the hospital about my MRI results, and also asked about my EEG. He was told by the hospital that’s too far for us to travel that they have sent off two referrals to the local hospital for my EEG, because they want it done asap, but the local hospital just aren’t acting on it…how is that okay?!? 😩

I’ve had significantly less seizures today but my mood is in the pits…I’ll take that over the other way round, I guess!

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A quote

Every few weeks I am overwhelmed with how small and dark my life has become, because of seizures. I feel suffocated by all I have lost and all that I can no longer do. I spend a day crying and mourning for the life I once had. 

Today is one of those days. This is life with a disability. This is life with huge limitations. I’m not ashamed.