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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 😀

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 🙂

 

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Mania & sleep

Gog here.

Still we trudge through Anon’s manic episode. It’s become our nightly ritual that I sit with her and help her understand how manic she is – according to her she’s stable, not manic, and if I didn’t insist she would mark that down on her mood chart.

Considering we want to use this chart as a reference, and as evidence to various professionals in the future, it’s important it’s accurate.

Every night we sit down and Anon begins to fill the chart in, and I have to gently disagree and say “let’s think over today, do you remember how you haven’t been able to sit still at all? And you’ve had to keep moving? Maybe we should lower that point…”

I’ll point out her different scores (particularly the sleep, ability to sit still and concentrate, and racing thoughts) and guide her to the understanding that her mania rating needs to be more than 5/10 – suicidal is 0, extremely manic is 10, stable is 5.

I could just let her fill it in herself and edit it later, but I think trying to help her understand and recognise she is manic is better.

Her sleep has been abysmal since 4th May now. The night before last we decided she should take 2.5mg of Valium, as she wanted to get some sleep (oh how she HATES not being able to sleep at night!) and I wanted to prevent the mania from climbing. That night she had 10 hours sleep, today she got 9.5, including 7 hours overnight and several naps.

Here’s the past week in sleep:

6 hours broken sleep
5 hours (including a nap)
6 hours broken sleep
5 hours broken sleep
4 hours broken sleep
10 hours good sleep (Valium)
9.5 hours, mix of broken and good sleep (including naps)

To say this has been going on so long now, and she usually sleeps 9-10 hours a night, she must have one hell of a deficit…

She’s asked for another 2.5mg of Valium again tonight. I know she isn’t currently prescribed it and no Doctor would be happy we were using it like this, but she needs to sleep, and if the NHS won’t offer us any help I don’t know what else we can do.

I’ve noticed after a decent night’s sleep the mania seems less intense…she’s slightly more able to sit and focus on activities, and she seems happier instead of exploding with energy or rage.

Aside from sleep we’re still doing pretty good; Anon is handling this manic episode like a champ and trying hard. I just want to try prevent it climbing higher.

Nobody from the NHS has been in touch. We have received no help since we started fighting for it in November 2015, and we still haven’t heard from the place that the GP said would get in touch asap – we were told that on April 7th.

I don’t really mind because I think the reason Anon is doing so well is that we aren’t pushing for help and dealing with stressful appointments…I just think the NHS is absolutely disgusting when it comes to mental health.