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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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Anyone w/ MRI experience?

So yesterday I got my appt through for my MRI at the nearer hospital, and it’s this Friday 😳

My bf(/carer) rang today to ask a few questions, eg about dimming lighting, turning lights off etc. He also said “during seizures Dally may twitch or move their hand/arm – what happens in that situation?”, and the nurse said if I have seizure and move, the MRI is ruined 😳😫

She then asked how likely it was I’d have a seizure, and it’s like um…very? πŸ˜…

I mean travel there will have weakened me & caused seizures, the lights at the hospital will have trigger me, and even on a ‘good’ day for seizures (w/ no big triggers) that sees me having 10-15 seizures…so yeah, add in some BIG triggers and I’m definitely gonna have a couple in 20-45 minutes of MRI-fun-time!!

So the nurse was like ‘hmm, that is problematic’, and we’re here thinking WHY WAS NOBODY TOLD THAT I HAVE SO MANY SEIZURES A DAY, & STAYING COMPLETELY STILL FOR SO LONG WOULD BE AN ISSUE?! Like is that not kind of important?!? πŸ˜‚

Seriously, if we didn’t know how useless the NHS is, we could have not phoned to let them know and just assumed it would be on my file!! Then we’d have got there and nothing would have been prepared and we’d be screwed!

The nurse asked my bf how reliable my auras are, and he said I get auras with about 70% of my seizures. So now the plan is if I have an aura during the MRI, I press the panic button. They’re also gonna possibly put extra padding around my head in the cage, to try keep it still if I seize without an aura 😫

My question to anyone with experience who has experience with an MRI – do you know if they can pause, during? Eg if I pushed the panic button, can they pause the MRI until I’m still again or would it be starting again?!

Good news though, they have said they can turn all the lights off in the MRI room, including in the machine itself. So at least that’s something πŸ˜…

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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…?

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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.

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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 πŸ˜‚

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? πŸ˜…

Exhausted. Yawn.

4

I despise my parents

Parents should be the people you can rely on most in life to support you…I’m reaching breaking point with my parents yet again πŸ˜‘

They’re completely unsupportive, which we already knew, but the worst is when I’m telling them something difficult (that I’ve had a lot of seizures, or that I feel extremely sad, that I can’t cope with how poor my quality of life is)…they don’t respond, they don’t care. I called yesterday afternoon and was almost in tears, because sometimes I’m just so overwhelmed by how limited my life is, so lovely…and they were not responding to things I said and YAWNING down the phone at me!

When I hung up, after an incredibly upsetting, frustrating phonecall, they didn’t bother to get in touch or ask how I was at all…my partner stupidly thought they might text and check in, I knew they wouldn’t.

No matter how many times I try explain what my life is like or how awful my seizures are, they can’t grasp it at all, there’s never a hint of understanding or sympathy. Anytime I talk about being disabled I’m met with silence, whistling, or a change of subject. It’s absolutely disgusting.

On some level I know they either care, or want to appear to others (family) as if they care (this charade is *hugely* important to them)…but I can’t do it anymore. I’m tired of having to parent them, of listening to their issues and sympathising with them, whilst I get nothing in return. I’m struggling to live with 12-25 seizures a day, mourning the loss of my independence & any semblance of a life…I just can’t do it.

I tried to ring my dad today to ask about a recording device. I got my PIP letter through (whole other story which I’ll try post about) and the only way they let you record the consultation (which I need otherwise I’ll remember none of it) is if the device creates two hard copies of the recording by the end of the assessment – cassette or CD.

I wanted to ask my dad if he had anything he could lend or any ideas what we could use; he let the phone ring then hung up, twice, and hasn’t attempted to get in touch since πŸ™„

I put up with an abusive childhood and forgave them. I put up with them mocking my self-harm as a young teen, and forgave them. I put up with them screaming at me when I disclosed my mental health condition, and forgave them. I put up with their entire lack of support or interest when I started having seizures, and forgave them.

But I’m gonna have to have a break, at least for a little while. Putting up with their shit is so bad for my mental health.

If I sound like a whiny dick, I’m sorry. I’ve just put up with too much shit for so long, and sometimes it’s way, way too much.