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…?


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 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.


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.


Happy Christmas everybody

We’ve had a truly awful lead up to Christmas. Thankfully myself and partner celebrated about 10 days ago and exchanged presents, because I was having a good day for seizures…I’m HUGELY grateful we celebrated then as we actually had a nice day!!

My seizures have been absolutely disastrous this past week, I’ve had two awful migraines…one was my worst yet, with me writhing in bed for hours in absolute agony. Today is another day with seizure clusters and me just feeling totally out of it. And to add to the awfulness, one of our dogs had to be PTS less than a week ago…sheesh. 

I hope your Christmas build-up has gone better than ours, have a lovely day πŸŽ„


The day the sea froze!

We went searching for sea pottery a few days ago.

This is one of our very enjoyable but unusual hobbies πŸ˜‚ Hey, it’s free, gets us out of the house, is interesting, and easy to pause for when seizures hit!

It was -3c when we went, and the beach was covered in frozen salt water! The quicksand was also frozen, which meant we could travel much further out, and as a result we found some truly beautiful pieces…this was easily our most successful trip!

If you don’t want to see boring photos of old pottery, stop here πŸ˜‰

These two pieces, although very dull to look at, we’re cool because we could face date them! They were dated around 1880-1936, as we were able to identify the back stamps.

And here are some of my favourites!

The huge brown circle is a ‘kick up’, the base of a very old bottle. This one is actually green (you can see when light shines at it) and must have been part of a giant bottle!

The entire collection from that day’s outing

And look at all this ice!! I’ve never seen this in all the years I’ve lived here!