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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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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…

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Mania & POTS does not mix well…

Full of energy & drive to get up and GO, in a body where when I stand my heart rate increases to 140+ and I have seizures or pass out…I mean it’s just not a good mix, is it 😂

My partner was out in the garden today, so I vacuumed the living room without his knowledge – nobody to tell me off & make me sit down!!

This is the first time I’ve managed to vacuum an entire room in like 2 years. My rate got to 168 and my symptoms were AWFUL – entire body trembling, gasping for breath, nauseous, sweating a ton, visual auras, brain fog. Fun times 😅

It took me about an hour to feel better. But hey, I helped tidy!!

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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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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!