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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. Β 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, secondlyΒ 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 We then phoned Epilepsy Action’s advice line, who were almost as unhelpful and out of date in their information…according to them seizures cannot be triggered by fluorescent lighting?!?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 πŸ™‚

Here’s me in a brightly lit shop!!

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And we even had a meal at a pub πŸ˜€

And an ice cream with a view for desert!!

Awesome day πŸ™‚

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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Seizures aren’t all the same!

Did you know there are over 40 different type of seizures?

When people hear the word epilepsy, they think of people dropping to the floor and shaking…but that isn’t even the most common type of seizure!!

The most common type of seizure is complex partial (also called focal impaired) seizures; where the person looks conscious, and may move or wander, but in actual fact they have lost consciousness. Think of the phrase “the lights are on but nobody’s home”!

I have simple and complex partial seizures. I find on an almost daily basis that because my seizures don’t involve dropping to the ground, people don’t take it anywhere near as seriously. This pisses me off, because I deal with the following yet I have it ‘easy’?!

  1. Over a dozen seizures daily that last 1-2.5 minutes at a time
  2. Clusters, where I have half a dozen seizures in a 20 minute period
  3. A complete loss of control about where these seizures happen…it can be mid sentence, when I’m eating, surrounded by people, staring at someone etc
  4. Feeling exhausted afterwards
  5. Feeling spacey, slow-brained and confused
  6. After complex partial seizures I act erratic, and may shout swear words, burst into laughter, or gesticulate hugely with my hands. People have called me disgusting, because they assumed I was drunk / on drugs
  7. Before about 70% of my seizures I experience an aura, which lets me know a seizure is incoming. My auras vary from flashing white specks (the most common), to a panic aura. I feel flooded with panic, and often end up hyperventilating and crying, THEN having a seizure
  8. Losing large chunks of memory, hours at a time
  9. Not being able to go out without wearing gigantic ski goggles
  10. Having to avoid bright lights, flashing lights, arcades, the cinema, and bodies of water
  11. Having several migraines a week, because my brain is mush from all the seizures

Epilepsy is anΒ invisible illness. There’s so much suffering going on under the surface that passers by don’t see.

For anyone interested, this is me during a simple partial seizure

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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 πŸ˜€

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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 shopsΒ 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 πŸ˜€

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 πŸ˜€

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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 πŸ™‚

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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Hobbies

Epilepsy stole many hobbies from me.

I can’t hike as much as I used to (and I certainly can’t go out alone, as I have seizures on most walks), I can’t play video games, enjoy handheld consoles, read, write, enjoy photography, or watch TV. Those were basically all the hobbies I have ever enjoyed.

So I had to branch out.

I discovered needle felting, which I enjoy, although if I have a simple partial seizure and automatically carry on with what I was doing, the fast-stabby needle can be somewhat dangerous πŸ˜›

More recently I tried hand stamping.

This isn’t really that good a hobby for me, as I get hugely frustrated when I make a mistake and have little patience. With needle felting, mistakes can be easily gone over or redone. With hand stamping the product is normally ruined.

I’ve definitely improved from when I first started, but the progress hasn’t quite been enough yet!

The samples that came with the kit are really soft, which means they’re super easy to stamp. I actually got pretty good with them, aside from goofing which way some letters sat πŸ˜‰

Since then I bought some brass tags in, which you have to hit a lot harder. This causes the letters to jump about a lot more. I’ve done about ten brass tags, and this is the best I have so far.

I was really pissed with the jumping letters on the top two, because I used the single strike method, where you hit the stamp once…so how it jumped enough to imprint the letters twice, far apart, beats me!

Does anyone have any spoonie-friendly hobbies, that don’t involve light? I’m always on the lookout for more πŸ™‚

So far I’ve tried:
– soap carving
– needle felting
– hand stamping
– (and I will be trying) paper folding!

I prefer hobbies that produce things that can be used for something, even if it’s just given as a gift.

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Thank you guys!

A huge thank you to all who voted for me in the art competition – I actually won!!

I’ve never entered or won a competition before, so that was really really cool πŸ™‚

The $100 gift card had to be used on amazon.com, so finding things that would ship to the UK and where the shipping didn’t add $20+ was a little tricky, but we got some great things nonetheless.

For anybody interested, here’s what I got with my prize money!

Two kits for hand stamping, which is a new hobby I’m trying out. Currently I only have the alphabet, this was today’s attempt (the heart at the bottom was made using a Y!)

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The stamps I bought (I’ll be able to make my own dog tags with the numbers!)

A 6ft light dog lead and an easy clean treat bag for the pups.

A Pokemon cap for me, because I fell in love with it XD

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And I got my partner some t-shirts too…he’s an even bigger Pokemon fan than me, so yeah πŸ˜›

Today I have been floored by the worst cold.

My nose is a tap, my throat is covered in sand paper. I fought valiantly for less than four hours sleep last night, and exhaustion combined with being physically ill has lead to a high number of seizures today. Being a spoonie AND being ‘normally’ sick sucks XD