0

Don’t stop fighting!

If anyone had told me in the last 15 years that I could feel like I do now, I would have told them it was bullshit.

I spent 8 years trying to get help and trying to feel better through the NHS, and for 11 years I was varying levels of suicidal. From attempts and crying so much at night because I just didn’t want to live, to even when I was happy thinking if there was a magic button that would stop me existing, I would push it.

There wasn’t one point in the last almost decade where I would have chosen not to stop existing if I could. I just didn’t see the point in living; feeling okay / manic was followed by huge crushing depressive episodes, and I was never truly happy or stable, or enjoying life.

For years I was told the same old bullshit by neurotypicals who thought positivity was the answer to all my problems – “Oh just think positive! Don’t give up! Happiness is a choice! It will get better!”

Well, when you’ve felt so bad and feel fighting so long, you truly can’t believe that. And being told it repeatedly only makes you feel worse!

Then I started having seizures, dozens a day, and life got even harder. For 18 months I couldn’t go anywhere, and I was learning about myself all over again – what I could do (very little!!), and the list of things I couldn’t do anymore was endless – go out alone, read, photography, travel (bus, car or train), go into shops (supermarkets, vets, museums, bookshops), walk in forests, walks by rivers or the sea. I couldn’t even have the curtains open at home, EVER – I lived in darkness.

Then we began finding ways to manage.

My mental health had already improved tenfold just by dropping all medical appts. No meds, no psychiatrist, nothing. For me, this has been the thing that has helped me most. I am not recommending others take this route, but for me it’s been incredibly beneficial!

For 5 years I jumped through every hoop the NHS offered – I took all the meds they threw at me, and lived with devastating side effects. I saw bitchy social workers, incompetent social workers, abusive GPs and scary psychiatrists. I had A&E visits and calls / visits to crisis team were regular. I was a mess.

Then I stopped going to appts, and the pressure was off. Previously I was always terrified of my appts, and began stressing about the next as soon as one was over. I saw my SW every fortnight, I would tell her how suicidal I was and she would do nothing. I didn’t know how else to get help.

By not going to appts, we had to figure it out ourselves, and the constant stress of appts was gone. We banded together, discovered techniques that actually worked (as oppose to all the bullshit SWs suggestions!) and our communication improved. I still have some intense mood swings, but for the first time ever I have stable periods in between, and we muddle through supporting each other.

We even had to find our own way to manage seizures, because the NHS didn’t care – they’re not tonic clonic so obviously don’t affect me at all, right?! Most medical professionals I saw refused to even believe that there were other types of seizures.

And, of course,  most GPs blamed the ‘symptoms’ on my bipolar and wanted to soley talk about my MH…I would try explain that I have auras, identifiable triggers (including bright and flickering light), and EVERYTHING tallies up to focal seizures. But they wouldn’t even consider it.

They made me go through a completely uneccesary blood test before agreeing to put me on a waiting list to see a neurologist, which will be about 12 months. In the meantime they’re happy to leave me unattended with these seizures, which were (/are) ruining my life. No medication, no support, nothing.

So again, we banded together and figured out huge improvements ourselves.

My seizures are drastically reduced, I feel much more confident about having them in public (see previous post!) and they’re under control even if they’re not technically under control, because I’m still having about 15 a day 😛

So with all this shit, for the first time ever, life is good!

For any spoonies reading this, my message to you is: If you are struggling, fight for things to get better.

And no, I am not telling you to ‘think positive’ 😉 I’m just saying, don’t give up. Keep fighting for improvement, be it trying to eek some use out of the NHS, or finding things that work for yourself.

If you have a significant other, TALK!! Sound things off against each other, everything, and problem solve together. Be completely honest about your symptoms, your feelings, and what would help. Ask how they are doing, and what you can try do to support them too. Talk, talk, talk!

If you are disabled and can’t work, find little things to keep you busy and give you structure. I’ve found this really helps me.

Small hobbies that are easy to do include:

  • Adult colouring books
  • Collecting objects (I collect buttons and sea glass!)
  • Caring for pets
  • Hiking / walking (disability dependent)
  • Reading
  • Reviewing things (cider, movies, dog breeds, ANYTHING!)
  • Doodling

I’ve found hobbies that you can sink a lot of time into are super helpful. This could be…

  • Collecting sea glass
  • Volunteering at an animal rescue centre
  • Collecting litter
  • Traveling to beautiful places and taking photos
  • Video games
  • Blogging

Third important point: don’t EVER feel the need to push yourself past your limits.

You know your body and your conditions better than anybody else. If you need a full day lying in bed because your symptoms are crippling, do it. If all you can do in a day is one teeny dog walk, that is perfectly acceptable.

Listening to what your body needs is not  you being lazy!!

This is something I struggle hugely with. I come from a family where achievement is measured by grades or how ‘good’ your job is. From the time I was 12 there was a ton of pressure on what job I wanted when I was older, and by the time I was 16 this was suffocating. For an adult with disabilities, having that instilled in you is extremely stressful, and left me with constant shame and guilt.

But I’m slowly learning that my disabilities are NOT MY FAULT. I’m doing the best I can and I’m doing as much as I can.  If most people were given my chronic illnesses for one day it would floor them, so the fact I walk my dogs, care for my pets, and blog is phenomenal 🙂

I didn’t ask for this life. I would love to work. But I can’t, and  I refuse to feel guilty for being ill. My ‘job’ is to keep myself as healthy as possible!

I don’t really know where I’m going with this post anymore haha.

I basically wanted to say that life can get better. That you’re amazing for dealing with the shit as best you can, and  for knowing your limitations. That if you find help / things that work in unusual places, that’s AMAZING!

I had a GP appt a few weeks ago, and she was awful. She hinted heavily (and repeatedly) that I should get back in touch with MH services…and I was sitting there thinking “fuck you! Why would I *ever* do that?” 😛

Every living thing learns through positive reinforcement – we do what works. Keep doing it, and don’t let anyone make you feel guilty for it ❤

 

 

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2

I smashed it yesterday :D

So I’m getting to a wonderful point with my seizures, and I just need to celebrate.

Yesterday I had a looong day out (5 hours) and I had a lot of seizures.

I had seizures out on cliffs / the beach, in front of dozens of dog walkers. I had seizures in a pub and in front of a friend’s mum I had never met before. I wore my ski goggles around SO MANY PEOPLE.

And I was not ashamed!!

I wasn’t uncomfortable, or embarrassed. I have seizures, I might act weird, I might get sad, I might be on the ground, yes I have to wear goggles…IT’S A FUCKING HEALTH CONDITION, and if you can’t deal with it that’s on you, not me!!

This was a seizure (with a beautiful view!) yesterday

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(I was in zero danger of rolling off, and yes my partner was keeping a close eye on me. He’s been caring for me for years, and I have over a dozen seizures a day, so he’s pretty damn good at it 😛 )

And after I’d taken the time to recover, I was good to go again!

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I also took a risk yesterday and climbed up a cliff. Normally I avoid activities like this…because if I had a seizure, I could die XD

But we discussed it, and I’d be up and over within a minute AND my partner would be right there…I’m not living in bubble wrap, so I did it and it was fun 😀

I am DAMN PROUD of all of this.

For 18 months seizures took everything I had from me.

They ruined every hobby I had (didn’t have the mental capacity or memory to read, couldn’t enjoy photography as the PC screen and camera flash was a big trigger, couldn’t enjoy video games for the same reason, couldn’t hike due to lighting and seizures etc etc). For 18 months I didn’t leave our tiny village, I didn’t travel on transport, I didn’t go into shops. I didn’t LIVE!!

And with absolutely zero help from medical professionals (because they are awful, didn’t believe I was having seizures, and now it’s a 12 month wait to see a neurologist before they even think of meds) every day me and my partner are finding ways to manage and deal with both my seizures and my bipolar.

And we’re rocking it 🙂

Is life difficult? Of course. Am I still hugely limited? Well, yeah. Do I often feel out of it, ill, in pain and make an arse of myself? Of course! But I’m doing all I can to enjoy and make the most out of life, and I’m currently in a depressive episode!!

I’m really damn proud of both of us 🙂

And I am so, *so*, SO much happier with my new goggles!!

I was always uncomfortable and embarrassed in my old ones, because they were so huge and clunky and odd looking…I’m actually proud of my new goggles, I think they look badass 😀

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And on the side there are glow in the dark patches to let people know they’re for seizures 😀

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And some final photos of our new hobby, which we are REALLY enjoying!!

Seaglass hunting!

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I might dedicate an entire post to seaglass hunting, seeing as this blog is becoming more of a personal blog than a ‘lets just talk about how shit things are’ blog XD

3

Spoons, disability, stares

We had some friends stay recently, and boy did it take it’s toll on my body!!

I actually had a really fun time, and the friend who was here longest (four days) was so fantastically great about not putting pressure on us to do things, or on me to recover faster after seizures, but doing basically anything uses way too many of my spoons, so the trip was always gonna leave me knackered XD

Here are some photos of our adventures though!

On the final day I woke after five hours sleep to an awful migraine. I swallowed codeine and paracetamol throughout the day, whilst also trying to force my way through a drastically increased number of seizures…the first four hours of the day (walking our dogs, traveling into town and eating) were awful, but finally I started feeling better and was able to enjoy some museums 🙂

Our friend really was wonderful, and we noticed him doing several adorable things to help and put us at ease. This ranged from joking about brains being weird, to reminding us he could go off alone if we needed him to, and even catching me as I was falling during a seizure. Having that extra support was really appreciated!

I got a lot of stares one day, a really posh town where when I wore my goggles there last time (this was before we’d written EPILEPSY on the side) we got a lot of stares and rude comments. Well the same thing happened this time…wtf is it with that place?!?

The only comment came from kids, but there were plenty of people (generally older people) who gawked at me unapologetically. One man I stood in front of and stared back until he finally looked away, and my partner also told  a group of old woman that it was rude to stare.

We also had an old woman who, after I’d left my partner at the counter to pay, asked him “Are they those glasses for dyslexia? Do they have dyslexia?” UUUUGH, MIND YOUR OWN FUCKING BUSINESS!!

It gets exhausting -_-

Today my partner phoned up a helpline to try apply for a disabled person’s bus pass, as we realised we hadn’t tried since I started having seizures. We were told immediately that now I will qualify.

In order to prove that I would be refused a driving license (which is the bracket I fall under for all my disabilities – the others are legally blind, have no arms, can’t walk far, or have a severe learning disability), I first have to apply for a provisional driving license. So that I can be refused.

WHERE IS THE LOGIC THERE?!?

Haha!! So today we went into town and I got a passport-style photo ready to send off for my provisional. The owner of the photo shop was wonderful, we phoned in advance to ask if they could avoid using flash as I have epilepsy, and he said they don’t use flash but there are several lights / machines that are bright or flicker, so to send my partner in and notify him when we got there.

We did just that. When he saw me in my goggles he smiled and said “Wow, you really do have it bad don’t you?!” This wasn’t derisive at all, and made me feel understood. I do have it way worse than 98% of people with epilepsy in regards to how sensitive to lighting I am, and I’d rather that was acknowledged than he gave me some BS positivity!

He turned some things off and took the photos as quickly as possible, and I didn’t have any seizures! 🙂

I also tried to legally change my name for my bank account today, but the woman assisting us was an a-hole. She said that because our ‘witness’ wasn’t a solicitor it wouldn’t count for anything (this isn’t true, we checked when we were choosing our witness!), and when she got to my title of Mx, she turned to me and said “So you’ve just made that up, have you?”

No, Mx is a title just the same as Ms, Mr or Mrs. It is accepted to stand for Mix, so perfect for a non-binary person like me, and is legally accepted in the UK.

Ugh.

She sent off the forms regardless, but said head office may not approve it as “it has to be witnessed by a solicitor”. Bleh.

Also, my littlest turned one a few days ago! 😀

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0

Damn it world…

Life is throwing so much BS our way XD

Obnoxious GP, the most insane toothache that has spread to my whole jaw, my partner is ill, we had a really stressful day today with a damn electrician, my seizures have been terrible…and have I mentioned ow toothache?! 😀

The electrician came today, and all we’d been told is that it would be a ‘quick job’, He gets here and tells my partner it’s going to take SEVEN HOURS!! Holy shit.

So for the entire time I’m sat in a room upstairs out the way, because oddly enough I don’t want to have seizures in front of a stranger in my own damn house…but eventually the lighting in this room fucks with me (normally we’re only up there for an hour max) so I fall into a huge seizure cluster with an awful panic aura.

And after all that, one of the things he did was switch the light in our bathroom to a new fitting and bulb. We’d mentioned to our landlord if it was gonna be a bright light could we swap it somehow, to try prevent accidental seizures, and the landlord didn’t respond. We now have this behemoth of a light in there that is SO FUCKING BRIGHT.

I immediately hung a notice on the door, to try prevent people accidentally leaving the light on and me going upstairs and being immediately triggered *sigh*

After the electrician had finally gone I had a nap. I  woke with some killer seizures (one lasting 3 minutes 25 – possibly my longest awake seizure to date?!) and in agony from toothache.

(me summed up in a photo today – blank, seizey, befuddled and in pain XD)

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AAAGH.

Thankfully stressful shizz is over now, and we have friends coming to stay this weekend, so that should be fun. I love being able to socialise and have friends stay now, for the past 6+ years I have been too mentally / physically unwell to manage it, so this is a fun achievement 🙂

Please send us healing and happy thoughts, we both feel like zomibies XD

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3

Smashing stigma: shitty GP!

Oh we had a funny appt today 😀

I had blood tests done about a week ago, so I can finally be put on the waiting list to see a neurologist in regards to my seizures. If they are epileptic seizures I can then be put on medication to try stop them; if they’re non-epileptic seizures at least I know they’re not fucking with my brain, and we can try find ways to manage them.

The GP today was a HUGE bitch. So much so it was funny!

The appt started with her asking if I could take my goggles off, to which I replied I could, but the polarized lenses help prevent seizures. Strike one against me, she didn’t know what polarized lenses were and obviously hated feeling less superior.

I began telling her about the seizures (telling her about my auras, symptoms during and after).  I told her about CBD oil, and that we’ve identified several seizure triggers (she didn’t ask what they were or give me time to tell her them).

I showed her a recording of a seizure, and she responded with “Well what’s supposed to be going on here, because it looks like you’re just watching telly”.

OMG hahaha, what an idiot!! When I’ve just told you all the symptoms, and wow well done for showing you have no knowledge of seizures as anything other than tonic clonics / grand mals!!

This was the video btw

She spent ten minutes (meaning the appt ran over) talking about my MH. She kept trying to belittle or insult me, using my MH as a weapon, and got increasingly angry when I refused to be belittled or ashamed.

Some of the questions include

  • When was I last on medication
  • When was I last seen for my mental health
  • Why aren’t I receiving help now
  • What is my mental health like now
  • Why do I think my MH is better now
  • (weirdly) Did I go to a public school
  • (after staring VERY pointedly at the scars on my arm) Do I have a history of self-harming? Why? For how long?

I was able to answer these questions extremely confidently, and this also annoyed her. Me and my partner joined as a team to explain the stress of appointments were extremely detrimental to my MH, and the fact they never helped anyway meant all they did was make me worse. I am doing better now, mentally, than I have in almost a decade.

She then asked me if I worked and when I last worked, and did not approve of the fact I hadn’t been able to work due to disability for so long.

After this she began talking about my seizures, but obviously referring to them as “episodes”. She began telling me that they may not be “true seizures”, and I interrupted to say we were very well aware about non-epileptic seizures, but obviously it’s worth seeing a neurologist because if I do have epilepsy, I can get treatment.

Everytime she spoke about epileptic and non-epileptic seizures, she referred to them as ‘true’ and ‘not true’ seizures. Well done for perpetuating the stigma against PNES!!

She said we might want to collect more video footage before the neurologist, and we said we had about a dozen videos spanning a year. She began to say we might want to record how many seizures I have a day, and we interrupted her to say we use a seizure tracking app to record how many I have, triggers, auras etc.

By the end of the appt she hated us, because I wouldn’t be embarrassed about my history of MH, and we were so knowledgeable about all my conditions. We (my partner and I) came out laughing, and feeling like a really solid team 🙂

2

A scary day turned good

I woke up this morning and realised immediately something was not right.

I figured I was about to have a seizure (I have a lot of seizures just before and after waking), but when I got out of bed I didn’t have the balance to walk. I had to crawl to and up the stairs to go the loo, because I was literally tipping sideways when I tried to walk.

I had a few seizures but was still just totally spaced, out of it, and scared. I was having lots of seizure warnings (auras) and some seizures, but I wasn’t feeling better at all between them. I didn’t know if I should be heading to hospital or what.

I wondered if maybe I was about to have a really bad migraine, as in the past I’ve had similar auras to seizures for that, and the left side of my face felt numb. That also happened during a migraine aura in my teens. I took some extra strong pain pills just in case.

After an hour and a half of this scary ‘offness’, I finally began coming out of it. My brain began to clear, and although I was still spacey, it was different.

My final seizure was a very odd seizure where I wasn’t responding and was twitching, talking repeatedly about tadpoles – tadpoles?!?

My partner said I was lying staring blankly, alternating between saying “TADPOLES – TADPOLES – TADPOLES” and saying another phrase involving tadpoles.

I also had one of the seizures where I rubbed my eyes ferociously during – idk what that’s about. Afterwards I had huge red rings around my eyes!!

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And hey, who knew it – some disabilities are INVISIBLE!! This is *such* an important message to me, because so many chronically ill people with hidden disabilities constantly hear “but you don’t look sick!”

This could be from friends, family, or people who are being rude (intentionally or not) when you’re out in the world. Maybe you asked for a key to the disabled toilet at a library, maybe you have an assistance dog, whatever – to all the non-spoonies out there, you should never EVER EVER say to someone “you don’t look sick”. Looking sick has shit to do with it, if you’re sick, you’re sick.

For the last 90 minutes before the photo above, I was having seizures and scared I would end up in hospital. Looking at this photo, you wouldn’t know that.

‘Looking sick’ has no meaning on how much a disability affects your life.

(</rant>)

Once I’d recovered from the morning, we *had* to get out to a bank.

My partner’s bank card is broken (we have money in the account and can see our account on a machine, but for some reason the stupid bank aren’t letting us withdraw ANY money?!), and because my partner hasn’t had a phone for over a month due to his dad not sorting it, we had no way to ring the bank…my phone had no credit, and we couldn’t get money to top up with!!

So today we had to get to a bank before it shut at 4pm, to get money out of a savings account so we could live until his account is sorted.

The bus journey’s weren’t the hell I was imagining, thankfully, and neither was the trip out. I actually only had one or two seizures, and we were able to go in a few shops, eat a meal, etc 🙂

He was hiding the bubbles in his drink, because I have a tendency to accidentally fixate on them and trigger seizures!

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Afterwards we found this crazy ice cream booth in the market – flavours included salted liquorice, cheeky monkey, blue banana, and turkish delight! My partner got a turkish delight flavoured ice cream and now says it’s his favourite flavour!!

When we got back I was even able to clean parts of the house and join my partner walking two of our dogs.

So all in all today has been good…it just had a really awful start 😛

0

Bleh bleh and bleh

My mania crashed…it seems forcing my body to sleep using Valium was enough to break it, and oddly enough depression hasn’t followed (yet…). As it is I’m just agitated and feel weird, but that could also be due to the high number of seizures I’ve been having.

Today has been awful. A lot of emotional stress, seizures, and episodic dyscontrol syndrome. Plus bad luck and the world just being a dick XD

The best thing that happened today was that the train driver asked my partner if it was “one adult and a child” (thus mistaking me for a teenage boy XD). It sounds weird, that being a positive, but for me it feels so amazing not to be recognised as ‘a girl’ anymore.

I’ve never identified properly with the idea of being female – I hate my boobs, I never felt like a girl, and I’ve been a ‘tomboy’ since I was about 8. But at the same time I didn’t feel male either…I didn’t want a penis, I didn’t want to change my gender. When I discovered the term genderqueer / non-binary, everything made sense!

For the first time I’ve been able to BE me 🙂

I finally have the freedom to dress how I want without feeling guilty because ooh but girls don’t dress like this, and changing my name to a unisex name means I feel so much more comfortable in my own skin.

So the fact that the ticket guy didn’t look at me and see GIRL really made my heart soar 🙂

After a long day my body was knackered, so I lay in bed for half an hour fighting for sleep. When my body finally surrendered I slept for over 90 minutes, but had the worst wake up…over half an hour of back-to-back seizures, where I wasn’t able to move, speak, or open my eyes. I HATE seizure clusters as I’m waking, it’s awful.

Zombie me!

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Speaking of zombie me, my partner managed to catch footage of me during a complex / focal impaired seizure. These are the seizures where although my eyes are open, I am not conscious.

I move, fiddle and walk during these seizures, and afterwards I may be dazed, confused, shout nonsense or swear words, and act drunk. Watching myself move about like this, but look so ‘blank’ and lost, was hella weird.

And a weird photo of rust from our terrible day out.