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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…

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Things feel like they’re coming together

I had my ECG & am waiting for the results now. I think as soon as they come in I’ll have to have a GP appt, & then I can ask for a printout of the cardiologists report so I can have my own copy of that too.

They give you a diary to fill out every time you experience symptoms; it had 25 slots & by the end of day 1 I had completely filled it 😂

I had numerous seizures related to my heart rate & lots of heart rate spikes whilst wearing it, so let’s hope I get a knowledgeable cardiologist who has actually heard of postural orthostatic tachycardia syndrome, & who will write a good letter to my GP!! It will also be my first GP appt seeing my Dr in my wheelchair, & even though my chair has been fantastic & given me some semblance of a life back, I’m worried how my GP will react to it, because y’know what the NHS is like 🙄

I finally have my disabled travel (rail) pass on the way, yaaay. And that should be here in 4-6 days 🙂

I’m still waiting for my 24 hour EEG appt to come through…I guess it’s good to double check for electrical activity, but given I’m 90% sure my seizures are physiologic (caused by lack of oxygen to my brain & vastly dropping blood pressure, due to POTS), I’m not too worried/excited about the results. I kinda wish we’d had the opportunity to fricking talk with the neurologist, so I could explain about POTS, but again – y’know what the NHS is like! My first neurologist left after my first appt last year, & we haven’t seen/spoken to another since as there’s apparently a shortage of neurologists…so basically he has no idea about any of my new medical diagnoses or investigations.

Also we tried to swap which hospital my neuro appts get referred to…basically the stupid fucking Dr sending the referral last summer (who was an uber bitch!) sent me to the neurologist hospital that is 90+ minutes away, rather than the one that is 15 minutes away…like?! 😂

When one of the nurses told us we could have been sent to the local hospital, & asked why we were having to travel so far, we were flabbergasted! We asked her how we’d go about switching, and she said it would be easy & to do it through our GP surgery.

We get in touch with them & start the ball rolling, & I get an email a few days later saying if we ask to be switched, the whooole process will start from scratch & I’ll be waiting ten months to see a neurologist!!! What the fuck?! But this isn’t even our fault?! 😂

It should be noted that Dr Footitt has never met me & only knows my case from notes on my file…so why a Dr at the nearby hospital couldn’t pick it up from my file like he did, I have no idea 🙄

The only reason it’s worth us switching is because we literally *can’t* get to that hospital unless we get a lift, which requires my parents taking a day off work…and obviously that’s not really an option.

So. We’re gonna try get the EEG out the way & get the results, then start the process of switching…eesh 🙄

Mentally I’m still a huge mess, & all the issues last February with benefits & having to have so many appts with the NHS (BOTH of which trigger mood episodes, panic attacks, & scheme anxiety) have still left me battling my bipolar in a way I haven’t had to in so long. And yes, it’s mid-July now, five months later, and I’m STILL unbalanced from that 😥

Currently I’m in a depressive episode that started at the end of June, but I’m fighting hard & Lyle is doing all he can to help…we’ll get through this!

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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 😂