0

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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5

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 ๐Ÿ˜ฉ

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 ๐Ÿ˜… 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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Fall-outs, weird days, depression be gone

Sorry I haven’t been posting much, I’ve been going through such an intense depressive episode ๐Ÿ˜ซ

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 ๐Ÿ™‚

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 ๐Ÿ˜‚ Be pushed back to the neuro switchboard for the 3rd & final time, then referred to the x-ray department HAHAHA ๐Ÿ˜ถ๐Ÿ˜‚

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!” ๐Ÿ˜…

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…?

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Difficult days

Depression has been suffocating me for a few weeks now, and then yesterday I had one of the worst days for seizures I’ve had in a long time.

Things are pretty stressful atm and stress is one of my top 5 seizure triggers. Yesterday this really showed!

I had three big clusters of seizures, lasting over an hour each time. About 20 minutes of back-to-back seizures (each seizure lasting 2-3 minutes, with a 20 second break of me being somewhat lucid, then another rolling in), then 40-60 minutes afterwards where I act messed up…laughing spontaneously, shouting, repeating words for minutes on end, talking nonsense, swearing etc.

After each cluster I feel incredibly spacey and it takes me a long time to recover. So three of them in one day leaves me with little time to feel well, as I feel off before them too!

I finally came around late evening, so we were able to get the dogs out right at the end of the day and enjoy a takeaway. I hope today is better for seizures, although my depression is already making me feel terrible…better days had better be ahead!

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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 –ย 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, ย 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 ๐Ÿ˜›

So with all this shit, for the first time ever,ย 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’ ๐Ÿ˜‰ 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,ย 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 ย 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 asย much as I can. ย 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 ๐Ÿ™‚

I didn’t ask for this life. I would love to work. But I can’t, and ย 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 ย 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?” ๐Ÿ˜›

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 โค

 

 

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

seizures

(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 ๐Ÿ˜› )

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

seizures1

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 ๐Ÿ˜€

I am DAMN PROUD of all of this.

For 18 months seizures tookย 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). Forย 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)ย 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 ๐Ÿ™‚

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,ย and I’m currently in a depressive episode!!

I’m really damn proud of both of us ๐Ÿ™‚

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 ๐Ÿ˜€

mois8

And on the side there are glow in the dark patches to let people know they’re for seizures ๐Ÿ˜€

mois6

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

Seaglass hunting!

seaglass16

seaglass13

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

2

Episodic Dyscontrol Syndrome

Recently we discovered I fit all the criteria for Episodic Dyscontrol Syndrome.

The rage ties into my seizures, and previously I had been calling it seizure rage. My partner did some research into this the other day, and we discovered EDS. Whilst seizure rage is less extreme anger, and not usually directed at a person, EDS is uncontrollable rage, which focuses on one person, and causes the sufferer to lash out verbally and physically.

This is me.

Usually it’s something small that triggers the episode, something that may mildly frustrate the person, but the EDS makes you fly off the handle. Because you can’t control the anger or your behaviour, but you remember it afterwards, the sufferer is often left with crippling guilt.

THIS. IS. ME!!

I’ve never been an angry or violent person. Sure, in mania I might be very irritable, but the rage and violence I experience with my seizures is unbelievable…and as a result the guilt is overwhelming. It leads to depressive episodes, and stress which causes more seizures.

Since finding an explanation for my behaviour, we both feel much better. I still feel like shit after episodes, but it’s nice to have a reason. Now if only we could find a way to manage it…

I would hope that CBD oil could reduce it, but it doesn’t seem to. CBD oil has taken my seizures from 25-35 seizures a day to 8-15, but the EDS symptoms continue…