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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 😛

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 😉

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 🙂

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 🙂

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!)

handstamp

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

prizes4

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

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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My mood takes a dive

My psychosis is creeping up and my mood’s taking a dive. I imagine the two are connected.

I didn’t realise I was even experiencing psychosis until a few days ago, when my partner commented he couldn’t see something I could…then a few other things clicked into place too!

It feels like depressive episodes creep up on me so quickly these days, it’s scary. It’s like quicksand; I go from feeling safe, on a solid surface, to floundering helplessly and in grave danger very quickly.

I only noticed my mood plunging a few days ago and already I feel really, really bad.

My partner’s noticed, obviously, but I’m able to hide the true extent…it’s not that I want to lie to him, it’s just that I feel bad telling him how awful I truly feel, and dragging him into the darkness too.

Mental illness sucks so much dick…

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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 😀

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 —> Demon of Psychosis

All votes are appreciated, thank you!

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Out of spoons

Yesterday I had a day out.

Not much; 10 minute train to the seaside, hour and a half walking about, 10 minute train back. The rest of that day I was out of spoons though, I felt awful.

Today I am apparently still out of spoons, this day has been hell.

My seizures have all lasted longer than usual. They’ve affected me worse than usual. I’m struggling mentally, I feel low and hopeless. I had two outbursts of EDS. I’m just doing awful.

Filled with hate, filled with anger, don’t know why I bother.

Gonna cocoon and try regroup.

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Episodic Dyscontrol Syndrome

Recently we discovered I fit all the criteria for Episodic Dyscontrol Syndrome.

The rage ties into my seizures, and previously I had been calling it seizure rage. My partner did some research into this the other day, and we discovered EDS. Whilst seizure rage is less extreme anger, and not usually directed at a person, EDS is uncontrollable rage, which focuses on one person, and causes the sufferer to lash out verbally and physically.

This is me.

Usually it’s something small that triggers the episode, something that may mildly frustrate the person, but the EDS makes you fly off the handle. Because you can’t control the anger or your behaviour, but you remember it afterwards, the sufferer is often left with crippling guilt.

THIS. IS. ME!!

I’ve never been an angry or violent person. Sure, in mania I might be very irritable, but the rage and violence I experience with my seizures is unbelievable…and as a result the guilt is overwhelming. It leads to depressive episodes, and stress which causes more seizures.

Since finding an explanation for my behaviour, we both feel much better. I still feel like shit after episodes, but it’s nice to have a reason. Now if only we could find a way to manage it…

I would hope that CBD oil could reduce it, but it doesn’t seem to. CBD oil has taken my seizures from 25-35 seizures a day to 8-15, but the EDS symptoms continue…