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 🙂

I finally have the freedom to dress how I want without feeling guilty because 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 🙂

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!

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.

The many faces of mania

About a week ago we noticed the very beginning of hypomania.

Since then it’s rocketed upwards. It’s felt VERY odd feeling this way, I don’t remember when my last manic episode was, and especially not where I got this manic!

All of yesterday was awful, but by the evening I was entirely broken.

For six nights I hadn’t gotten more than 6 hours sleep, with the smallest amount being less than 4 hours. I was jittery, couldn’t focus on anything, was irritable, and constantly moving – rocking, flailing my legs, punching myself. I felt like I was crawling out my skin.

My bf gave me half a valium in the evening. That usually knocks me right out; my mania was so intense I was left very much awake, but much more lucid and able to concentrate. I took another half before bed, and slept 5 blissful hours last night!

I’ve had half a valium early today, and will take another this evening. Must keep the mania at bay!!!

Anywho, here are the many faces of mania – insomnia, intense energy and frustration, bouncing off the walls.

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 😀

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 (that 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 wait 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 🙂

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 🙂

 

Why must I be out in the world?!

We signed up to the new GP surgery today, the other one in our town.

We get there, and the receptionist says that although we’ll be signed to this surgery, most appts will be at the other surgery, a 25 minute bus ride away…whyyyyy?!

Apparently you can see Dr’s at our surgery, it’s just a longer wait as there are fewer appt slots there. We said that was fine as the previous surgery left you waiting 3 weeks for an emergency appt XD

Even so, apparently we have to have a ‘meet and greet’ appt with the GP before we will be registered, and that has to be at the far away surgery…this sucks because I’m already going to freaking out (I haven’t had a physical appt at a surgery in a few years, and this will be a new surgery with a new Dr!) and the bus will make me very sensitive seizures too. Add some stress and I’ll be fucked >__<

The receptionist said the lighting was dim at that surgery too, when I asked, but my bf still wants to try and get the meet and greet at the nearby one. Idk.

Filling the questionnaire in was fun, considering all the information they demanded from you, and I had no idea what to put for epilepsy…I’m 98% certain I have epilepsy (as my seizures are light triggers, no t tonic clonic, and I have auras – all are incredibly rare with NES), but as I’m not diagnosed I couldn’t circle it.

In the end I circled everything, and put seizures under investigation, which is what a previous Dr wrote on my fit note.

Whilst we were out I also goggled up and got to go in the second hand bookstore, where I haven’t been able to go for years due to seizures and lighting. I love this place, and found a very old interesting dog breed book 😀