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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 πŸ˜‚

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 πŸ˜…

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

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Things have been difficult, but I am back!

An angry update against the NHS πŸ˜‰

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 πŸ™„

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 πŸ™„

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 πŸ™„

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

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 snowπŸ™‚

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 πŸ˜ƒ

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

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Broken

I had another broken day today πŸ™„

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 πŸ™„

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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Everything is an uphill battle

I’m feeling totally overwhelmed at the moment, and depression is engulfing me again.

Yesterday marked 3 weeks since our PIP assessment, which we were led to believe that, because it was adding a new health condition and not a new claim, we would get the results within 3 weeks.

We got a letter from PIP, and opened it feeling sick with nerves…and it was this!!

Like…no!! Don’t say ‘we have your information’ when you’re supposed to be saying ‘we have your result’!!!

So my partner went to call the number to ask how long, and the automated script whilst you’re on hold has been updated to say you should wait at least FOUR WEEKS for your result now…like for fuck sake!! This is do taxing on my mental health, I just want it over with 😩

One of the most disgusting thing about benefits is how hard they make the process for disabled people. The people who need the most help!

This entire process has been a nightmare, and alongside it there’s been the Universal Credit process which has been going on for 10 months, & is just as bad!! I just want to know if we’re going to get the money we deserve. I want to know we’ll get money so we can not just ‘scrape by’, but LIVE. So we don’t have to worry. I want to know we won’t have to rely on a foodbank again, that we won’t lose our house, that I can get my disabled bus pass!

I’ve jumped through every hoop & it’s been so mentally AND physically taxing…so the fact we have to wait longer than they first said brought me to tears. UC has no end in sight, but PIP should’ve been over.

Anyway. That was yesterday.

Today everything feels like a very intense uphill battle. I’m feeling completely overwhelmed, even though there are no ‘scary’ plans today, no need to feel that way. I want to cry thinking that the instant I leave the house I’ll start having numerous seizures…what is my life?! What is the point?? Why am I continuing to live when my life is just being in a gloomy house?

Finley, our puppy, comes home at the end of this month. I need him so badly. Just gotta hold on.

Yesterday we went for a short walk around the forest at the end of our road. I didn’t wear my goggles, because if I do I miss out on the beauty of nature, I miss out on partaking in one of my favourite hobbies, photography!

I should be wearing my goggles anytime I’m outdoors, really. But I hate them so much that I really only wear them when I’m around lights (shops, restaurants, hospitals, buses, trains, town etc) or if I’m having a really bad day.

When I’m out in nature, I want to *feel* it, experience it…and you can’t do that wearing goggles that turn the world incredibly dark, steam up, and remove the beauty πŸ˜… Seriously, when I wear my goggles the world is muted to one dark-blue colour, there is no beauty.

If they stopped all my seizures outdoors I’d probably wear them all the time, because then it would be worth it. But if I’m gonna have seizures anyway I’d rather enjoy the beauty, thanks!

I’m so tired of not being able to do anything, not being able to go anywhere. Of having dozens of seizures everyday, just from being indoors and going on ONE WALK a day! I miss going places and doing things, not just walks…I miss days out, shops, visiting exciting places. I don’t remember the last time I was in a shop, even a small one, it was weeks ago.

I miss living.

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Stupid comments are stupid!

I suffer from extremely photosensitive seizures.

This means any change in lighting is a trigger (eg leaving our gloomy house and going into daylight), TVs are a trigger, florescent lighting is a trigger etc etc.

So I have to wear goggles, and they reduce the amount of seizures I have outside of home by about 30%, more if I’m somewhere extremely bright.

Those are welders goggles, and these are ski goggles. I use both depending on the type of lighting I’m battling or how bad of a day I’m having.

You would not believe how much attention I receive, simply because I am wearing goggles πŸ™„πŸ˜ž

I mean, they’re not that big a deal, right? Wrong, according to the rest of the world 😫

Reactions vary from the mild – staring as I walk past, often staring with mouth agape (no honestly, this happens ALL THE TIME!).

To the ridiculous and rude – from laughter and cries of “what the fuck” and “nice goggles!”, to the comments I hate much more. These come from people who see their comments as innocent, or funny – certainly harmless.

BUT THEY’RE NOT πŸ˜‘

These comments are usually along the lines of…

  • Forecast snow today are we?
  • Going deep sea diving?!
  • Oh wow, is that the latest fashion accessory?
  • Why are you wearing those? Oh they’re for seizures? Do they work? Do you wear them at home? Can I try them on?
  • Hey, look, a bank robber!

To anybody reading this thinking ‘well I don’t think any of those comments are that bad!’…it will be hard to get you to understand how they make me feel.

The thing is, when you’re already aware you’re attracting attention, and you’re already battling the difficulties of a disability, these comments are almost more than I can bear!!

They remind me I’m different, that people can’t see past that, that people are laughing at me. That I’m being watched ALL THE TIME because of goggles I have no choice but to wear…I’m constantly thinking ‘can I risk not wearing my goggles here? Am I bad enough I *have* to wear them?’

These comments force me to interact with people, and to disclose my disability. People are fucking rude!!

But more than that I shouldn’t have to deal with these comments!!!

Sometimes it’s not about them making me feel sad, it’s just about…well, people should learn to mind their damn business! I should be able to go out and not have to worry about comments or questions! Just as (most) people wouldn’t think it okay to say to a wheelchair user “too lazy to walk?!”, making a ‘funny’ comment about my goggles isn’t okay either! I don’t owe you an explanation, and you can keep your bullshit humour to yourself…I’m sure I’ve heard your ‘joke’ dozens of times before anyway πŸ™„

I HATE having to go out in my goggles, but *especially* to busy places, such as restaurants or towns. I see people staring and sniggering dozens of times, and get at least a few arsehole comments for every hour I’m out…it makes me hideously aware that I’m different and look ‘stupid’ πŸ™„

So next time you see someone different, and feel like making a humorous comment about it…just don’t. There’s really no need.

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Fall-outs, weird days, depression be gone

Sorry I haven’t been posting much, I’ve been going through such an intense depressive episode 😫

It’s been really tough, I’ve shed a lot of tears and have spent most my time feeling guilty & hopeless. Add to that family arguments/conflict on both sides, the stress of PIP assessments and other benefit crap, the daily struggle of various disabilities, and the fact I’m still grieving for our dog that was PTS before Christmas…and yeah, things have been awful.

But I hope I’m kinda climbing my way out of it.

It was supposed to be my MRI this weekend, but because of how fraught things were with my parents, we phoned up and delayed it so that it could take place at the hospital 15 minutes away instead of 90+ minutes away. My EEG & neurologist appts should also be there now, too, so that’s good πŸ™‚

In order to switch where the appts were, my partner had to ring the following:

Call the neuro switchboard. Be put through to my neuro’s secretary. Be referred to the neuro switchboard again. Be transferred to the secretary AGAIN πŸ˜‚ Be pushed back to the neuro switchboard for the 3rd & final time, then referred to the x-ray department HAHAHA πŸ˜ΆπŸ˜‚

The nurse we finally spoke to, in order to switch where the referral was, couldn’t believe we’d been sent to their hospital when our local is so much closer…we were like, “yeah, us neither!” πŸ˜…

I’m really, really glad that’s sorted though.

I’m knackered tonight. Seizure cluster this evening exhausted me, so I’m heading to bed now…hoping this post makes sense…?