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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!

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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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Hiding indoors helps

Because my brain’s been so screwy and I’ve been having so many seizures lately, I barely left the house this past week. I had 4 days holed up inside.

Finally, my seizure total for the day lowered, so our plan to hide away & let it reset worked. Just over a week ago I was having on average 24 seizures a day, after hiding indoors this lowered to 14 🙂

It definitely helps that we’ve discovered the room upstairs doesn’t trigger my seizures much at all. We basically live in one room of our house (because why move about and have to deal with lighting triggers?!), we were originally downstairs as that’s the biggest room in the house, but even with blackout curtains and strategically placed lamps it triggered a lot of seizures. Upstairs is SO MUCH BETTER. And weirdly it’s lighter up here, but because of where the light is it’s not a trigger.

Today though I thought I’d better go outside, go for a short walk. Be in the world just a little. I got some nice photos!

We were out about 45 minutes; I had 3 seizures on the walk, and 3 within twenty minutes of getting back home…lighting is such a fucking shitty trigger to have.

It’s also one that’s denied constantly by professionals…and no, it doesn’t have to be flickering/flashing, bright lights or changes in lighting for me are just as bad as flashing lights. Like yeah okay, I’m a special case & this is uncommon, but you don’t know everything about the brain and you can’t claim to know everything that triggers seizures 🙄😑

It’s been nice staying indoors and having less seizures as a result though. I’d forgotten what it felt like!

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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!