0

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.

Advertisements
0

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…

2

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!

0

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!!

0

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 😂

0

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!