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Bleh bleh and bleh

My mania crashed…it seems forcing my body to sleep using Valium was enough to break it, and oddly enough depression hasn’t followed (yet…). As it is I’m just agitated and feel weird, but that could also be due to the high number of seizures I’ve been having.

Today has been awful. A lot of emotional stress, seizures, and episodic dyscontrol syndrome. Plus bad luck and the world just being a dick XD

The best thing that happened today was that the train driver asked my partner if it was “one adult and a child” (thus mistaking me for a teenage boy XD). It sounds weird, that being a positive, but for me it feels so amazing not to be recognised as ‘a girl’ anymore.

I’ve never identified properly with the idea of being female – I hate my boobs, I never felt like a girl, and I’ve been a ‘tomboy’ since I was about 8. But at the same time I didn’t feel male either…I didn’t want a penis, I didn’t want to change my gender. When I discovered the term genderqueer / non-binary, everything made sense!

For the first time I’ve been able to BE me πŸ™‚

I finally have the freedom to dress how I want without feeling guilty becauseΒ ooh but girls don’t dress like this, and changing my name to a unisex name means I feel so much more comfortable in my own skin.

So the fact that the ticket guy didn’t look at me and see GIRL really made my heart soar πŸ™‚

After a long day my body was knackered, so I lay in bed for half an hour fighting for sleep. When my body finally surrendered I slept for over 90 minutes, but had the worst wake up…over half an hour of back-to-back seizures, where I wasn’t able to move, speak, or open my eyes. I HATE seizure clusters as I’m waking, it’s awful.

Zombie me!

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Speaking of zombie me, my partner managed to catch footage of me during a complex / focal impaired seizure. These are the seizures where although my eyes are open, I am not conscious.

I move, fiddle and walk during these seizures, and afterwards I may be dazed, confused, shout nonsense or swear words, and act drunk. Watching myself move about like this, but look so ‘blank’ and lost, was hella weird.

And a weird photo of rust from our terrible day out.

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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 πŸ˜€

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 (thatΒ 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 waitΒ 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 πŸ™‚

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 πŸ™‚

 

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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

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I entered a competition, want to vote??

Hey all!

I entered an art competition, for the first time in my life πŸ˜€

It’s aimed at people with mental health issues and is a ‘draw your demons’ competition. I drew how my psychosis feels.

If anybody would like to vote, or just see my picture, click this link —>Β Demon of Psychosis

All votes are appreciated, thank you!