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Nervous – my first BIG day in years!

Today my parents are up for a visit to belatedly celebrate my dad’s birthday, and we have a big day out planned.

We’re going to a zoo. Not just our teeny-but-lovely local zoo that’s a 15 minute drive away, but a BIG zoo a 50 minute drive away. That’s a huge journey for me (travel being my biggest trigger) and the zoo will most likely be packed with visitors, as it’s free admission until the end of this month.

After that, we’re hoping I’ll be well enough to look around a few shops and handle a meal out at a pub.

This is the sort of day out I haven’t been able to do in years, and so obviously I am nervous. I’m also aware that MANY people will stare at the zoo, due to my goggles. But I need them, so fuck ’em ๐Ÿ˜‰

With my wide-brimmed hat and my polarized goggles, I’m hoping we can enjoy a really good day out with not too many seizures. Nervous but excited!

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I am back in the world

After being a recluse for 18+ months due to seizures, being physically and mentally able to go places again feels absolutely phenomenal.

For over 18 months I only left the house for dog walks. I didn’t leave my village, I didn’t travel on public transport, go in supermarkets, or stay outside for long periods of time. I basically didn’t have a life.

Most of this period we were totally unaware I was having seizures, and were desperately trying to work out what was causing my odd behaviour, panic, zoning out etc. We were trying to manage it, live with it and understand it – my ex-social worker blamed my seizures on bipolar moods / psychosis, as dissociation, but otherwise left us alone to handle it ourselves. Shortly after we stopped going to appts, because we couldn’t manage and as ever they weren’t helping!!

Now that we’ve found ways to manage everything a bit better, and especially with the polarized goggles, I am actually able to get out and about in the world ๐Ÿ˜€

I’ve been able to go in shops!!! Actual well lit, big, supermarket shops! I can go on public transport. I can have longer periods of time out and enjoy things and just *be* a person with a life!!

One of the things I am now able to do is go and manage GP appts. We recently switched to a new GP surgery, as our previous surgery behaved disgustingly yet again…and the new surgery seems INCREDIBLE!

The Dr at the meet and greet was lovely; very friendly, polite, and the ‘negatives’ he listed about the surgery (thatย sometimes you might have to wait two days for an appt, or if you wanted one at a specific surgery the longest you might have to wait is six days) made us laugh…at our previous surgery we had to waitย three weeks for an emergency appt!!!!

He asked if either of us were on any referrals, and I mentioned that I was waiting to be referred to a neurologist to investigate seizures, but needed a blood test first. He said as soon as my info had been swapped across we could get that done, and if the previous surgery dicked about and didn’t send it soon enough, we could phone them, ask what specific blood test it is, and get it done sooner ๐Ÿ™‚

So I’m actually on the way to having my seizures looked at!

Overall a very positive post…and hopefully not because I’m manic hahaha!! No but really, having a life rocks. Of course days out the house still affect me more, with the result being exhaustion and increased seizures, but the fact I am able to do things just feels so incredibly wonderful ๐Ÿ™‚

 

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Bad bits and good bits

Today got off to a shit start, with my GP surgery being major dicks yet again!

My bf phoned up to ask if the surgery could legally do a blood test if I was having a seizure. ย As far as we knew I was on the waiting list for a home test, but we’d been waiting for months and thought with my new polarized goggles I could get in and out fairly easily…we just wouldn’t want to get there, me to have a seizure, and them to say “we can’t legally do it now, come back another day!”…and it’d NEVER be done!!

The receptionist was actually disgusting. She treated my bf like shit. She told him he was wasting their time asking this question, that “there’d be Dr’s there” if I did have a seizure, and – the best bit! – snapped “You’re not having a home visit, if that’s what you’re after!”

Firstly, that IS NOT what we were after, secondlyย according to the previous receptionist we spoke to we were already on that list!!!

Thanks for letting us know we weren’t at all XD

After receiving no answer, we hung up. We then phoned Epilepsy Action’s advice line, who were almost as unhelpful and out of date in their information…according to them seizures cannot be triggered by fluorescent lighting?!?

Quick google search showed me many others were also triggered by fluorescent / LED lighting, and this post on an epilepsy forum hit home as I share a lot of these triggers!

Anyway.

The benefit of this was that we discovered a new GP surgery in our town. It’s in a small house, so has normal lighting, and means I don’t have to deal with the shitty staff anymore…yay!

Today I went out for 3 hours, which was really fun! It resulted in a high number of seizures (21 simple partial, and 3 complex partial), but without my polarized goggles it would have been much more, and I wouldn’t have been able to do anywhere near as much ๐Ÿ™‚

Here’s me in a brightly lit shop!!

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And we even had a meal at a pub ๐Ÿ˜€

And an ice cream with a view for desert!!

Awesome day ๐Ÿ™‚

A few hours after we got back home, my brain crashed and I had to take a codeine for a migraine…but it was worth it!

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Epilepsy success: Blue Tinted Polarized Goggles!

So today has been INCREDIBLE!!!

About a week ago someone told me that polarized sunglasses help them when they feel a migraine coming on, and they wondered if they might help me with seizures. I am hugely photosensitive, to the point that changes in lighting (eg going indoors from outside), strobes, bright lights and reflections all trigger seizures.

I live a life of gloom; our curtains are always pulled shut and in the evening we have to use lamps hidden partially behind curtains, rather than turn on a big light.

I did some research into polarized lenses and epilepsy, and found that blue tinted polarized glasses have been found to be helpful in individuals with photosensitive epilepsy. So I ordered some ski goggles in – in part because they’re comfortable and easy to wear over my glasses, and also because ski goggles keep the light out much better than ski goggles.

When they arrived, they were HUGE…but they work wonders ๐Ÿ˜€

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Today I went out for 3.5 hours (which is a massive deal for me). This involved two 45 minutes bus journeys (I normally have at least half a dozen seizures on a 20 minute journey) and I went into brightly lit shopsย for the first time in a year!!!

Before this the only shops I was able to go in were dingily lit shops, such as most charity shops. If I nipped in and was wearing a sunhat, I could cope with them. But I hadn’t been in any shop with bright lighting (eg. Waterstones, supermarkets, chain pet shops, shopping arcades etc) in a year.

Today, because the goggles were helping so much, we risked it…NO SEIZURES!!

To be in a supermarket, and able to look around and find things I wanted to buy, without worrying about seizures or feeling ill, was truly amazing. Me and my partner were just walking around with huge grins on our faces ๐Ÿ˜€

As soon as we realised that it was safe, I went into Waterstones too! I *love* Waterstones and could easily spend a good few hours in there, so getting to go in for twenty minutes was phenomenal. I even got a new dog book!

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Finally we went into a shopping centre, and got some macarons. The guy commented “wow, those are some serious glasses!” I explained what they were for and that this was my first time out somewhere so bright, and the guy was lovely – he was genuinely happy for me, and gave us four free macarons ๐Ÿ˜€

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On this trip I had seven seizures total (5 simple partial and two complex partial), but all but one was at the very end, when my brain had had to cope with too much and was shutting down. Other than the very end, I had just one seizure ๐Ÿ™‚

The downside to the goggles were all the rude stares, comments, and sniggers I got. Today alone over a dozen people commented on them (generally degrading, or simple “what the fuck?” type comments) and some people walked past gawping or stood uncomfortable close and just frowned at me.

The most hilarious comments were a kid asking his dad if they were VR glasses, and was I walking around in virtual reality (!!); and a group of teenagers sniggering “nice glasses!” as they passed – my bf then replied “they’re for epilepsy”, and their faces fell as one mumbled “oh…sorry…” XD

I’m going to write EPILEPSY on the band and try fathom a way to put it on the front, in hopes of stopping the rude morons commenting, but for now I’d rather deal with anxiety around arseholes than have constant seizures and not be able to go anywhere!

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Full of seizure rage and the worst day ever

I’m so fucking pissed right now.

I have tried so many fucking things to try stop these seizures and they’re just as bad if not worse. You piece of shit CBD oil!! I’m doubling the dose, if this doesn’t help I’m pouring it down the bloody sink.

On top of that today we had to have my dog that was terminally ill PTS and my heart broke. I didn;’t even get to go to say bye as on th way to the vets I started having seizures, so thanks for that seizures.

And earlier in the day my assistance dog hurt her leg and was screaming in pain, we were stuck 30+ minutes from home and it was all shit. Thankfully we made it home, she hasn’t limped since, and after speaking with our vet she should be okay,.

So ready for this day to end I despise ABSOLUTELY DESPISE seizure rage. How is it possuible to feel this angry?!?!?!?!