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 😅 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.


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 🙄😞

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.


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 🙄

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’ 🙄

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


A quote

Every few weeks I am overwhelmed with how small and dark my life has become, because of seizures. I feel suffocated by all I have lost and all that I can no longer do. I spend a day crying and mourning for the life I once had. 

Today is one of those days. This is life with a disability. This is life with huge limitations. I’m not ashamed.


A good day

I actually had a good day today, although I’m paying for meeting up with relatives for 4 hours – very exhausted and seizey now!

Once we got home my bf called the company conducting my assessment for PIP, and the woman on the phone was just lovely and so helpful.

Firstly we asked if there was a way to move my assessment from the city 50 minutes away (where they gave us the appt) to the city 15 minutes away. Being out the house for longer triggers an increase in seizures; being on transport for any amount of time triggers an increase in seizures…so I couldn’t do that.

Anyway, they moved my assessment across really easily…which begs the question of why they were sending us further away in the first place?!

Next we had to ask about allowances in the assessment room. This would either be a room with no windows and dimmed lighting or a room with covered windows and dimmed lighting – failing that, a desk I can sit under andhide hide from the light 😂

The woman put that on file and their appointments team should be calling us in the next few days to talk about what they can do.

Finally we needed to ask about recording the assessment. The fact I have seizures means my memory is hugely affected, and I can’t remember things like I used to. An assessment is stressful, and not remembering what was said would be terrifying for me…however PIP sent us a booklet of rules, and one was that if you want to record the assessment you have to let them know in advance and use a recording device that provides two hard copies (CD or cassette) BY THE END OF THE ASSESSMENT.

So. We don’t have anything that could do this, and we can’t afford to buy a recording device. The woman’s going to ask if we can use a phone to record, and if not then my bf will be writing everything said by hand…meaning the assessment will last twice as long, but what can we do? 😅

Exhausted. Yawn.


Neurology soon!

Less than 2 weeks to my appt!

Today we went into town (out the house 4hrs, two 10 minute train journeys) and I’m approaching 30 seizures total for today. BUT we had a mainly nice time out 😊

Wearing my welders goggles I was able to go in a bank with ZERO seizures for the first time since I started having them, and none of the Christmas displays (which I love) were problematic because of their flashing lights. Last time I had to close my eyes when walking by them!

Apart from an absolutely disgusting teenager who made the comment “haha they have seizures, let’s get a strobe out!!” 🙄 it was a good trip!


Oh ffs

Thanks to the inordinate amount of stress I’m dealing with atm, it was always gonna trigger a depressive episode.

But it still really, really, REALLY sucks that it’s happened.

This is the last thing I needed right now 😞

I’m tired of my life being so, so limited. 

I’m tired of having dozens of seizures every day and living with all the after effects. Of living in fear. Of being unable to do anything for myself. Of having so little support from the NHS. Of benefits HEAPING stress onto my already difficult life. Of family & friends being totally oblivious to how awful everything is. Of my parents lacking all caring. 

I’m sick of everything…

I’m already scared of how this depressive episode is gonna go.. I hope it’s ended before Christmas 😭


We don’t have much money…

…and that’s okay!

Currently we can afford rent, bills and food. So we’re good! In the past we’ve had very very little money…I’m talking need to use a food bank, can’t afford ANYTHING little money. 

It was scary but it means we appreciate what we have, and money is never taken for granted. 

 I get so frustrated with people who are constantly bitching about being poor when they have so much, or who don’t deserve the money they have…life isn’t about money but I’m so damn sick of these idiots 😒

For example my parents can’t stand to hear us talk about money, and every time it’s brought up it’s like we’ve invited them to a challenge?! Like, it’ll come up naturally somehow – they’ll tell us ‘just buy it!’ about something vaguely expensive I want (eg £20 dog harness, or a video game) and I’ll say “oh no, we can’t afford it atm”…and it’s like a little switch flips to CHALLENGE ACCEPTED!!

So even though they: own a gorgeous 3 bed house for the 2 of them, have 2 cars, 2 apartments, have been on 5 holidays THIS YEAR, have bought 2 new cars…they immediately go on the defensive to insist they are poorer than us 😩

And god help us if we say they’re not, because then we get lovely ableist arguments, such as – well we have to go to work (great, wish I could work!!).

It shouldn’t rattle me, but this literally happens EVERY time I speak to them and it’s so fucking annoying! We’re poor, we have very little income, we haven’t had a holiday in 5yrs and got excited recently because we bought a £27 game, our second new game of 2017…we spend £20 on each other for Christmas/birthday, and even though we rarely go out so spend money that way, due to seizures, we never feel bad about it! We never even bring money up!!

Or my bf’s brother. He’s in his early 20s, lives with his parents, pays no rent / bills, and has a full time job…yet he spends all his money on drugs and (to a lesser extent) alcohol, so his parents always lend him money!!! Like, WHAT?!?

Life is so fucking unfair 😅

Meanwhile we’re having to fight tooth and nail to get the benefits we’re entitled to, I’m having people left and right call me lazy/telling me to get a job when I’m having 20+ seizures a day and can’t leave the house…ugh. Spoonie life guys, sometimes it just really gets to you…