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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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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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Aaaaagh everything is fucked

My hpomania has been building this past week.

The approach of summer is possibly my biggest trigger, and every single year as the days start getting longer and brighter, I struggle with sleep and rising mania.

I’ve gone from reduced sleep, to very little sleep, to last night 5am coming and going, and not being able to sleep.

Add this to seizures, and life is…interesting!

Today I had my most intense aura for seizures ever, followed almost instantly by seizures, big ones. I was irritable, then exhausted, then felt ill. I was okay a few hours later, now here I am feeling intensely fucking manic, which I’m 99.9% is a side effect of seizures and not actual mania….because it came out of nowhere and followed significant seizures.

Very confusing XD

AAAGH SO MUCH ENERGY WHAT DO I DO *proceeds to bounce off walls*

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Happy World Bipolar Day

Bipolar is a mood disorder characterised by periods of intense mood episodes.

Generally Bipolar mood swings last several months at a time, and rapid cycling Bipolar is characterised as someone who has 4 or more mood swings in one year. The idea that people with bipolar are constantly up and down, with moods changing many times a day, is generally untrue and more associated with other conditions, eg Borderline Personality Disorder.

The mood episodes caused by bipolar disorder are not ‘just’ feeling happy and sad, although that is a common mistake.

People with bipolar 2 have episodes of major depression and hypomania. People with Bipolar 1 have episodes of major depression, hypomania and mania.

Some people only experience mood episodes when they have experienced a ‘trigger’, whereas other people can recognise triggers that cause episodes, but are also hit out the blue. Common triggers for mood episodes are:

  • Late nights (eg. going out to a party)
  • Lack of sleep
  • Bright lights (eg shopping centres) or busy city centres
  • Chaotic life events, from losing a loved one to Christmas
  • Physical illness

What do these feel like, if they aren’t just being happy / sad?

Major Depression

This is far, far more than feeling sad. It’s having no energy to do anything, and spending days in bed because you can’t force yourself to get up, eat or shower. It’s feeling entirely hopeless, thinking there is nothing to live for, and everybody would be better off if you were dead.

It’s crying for hours every day, or feeling too empty and disconnected to cry, and so you just lie and stare up at the ceiling, wondering if you’re already dead. 

It’s planning how you would kill yourself, to the very last detail. It’s trying to kill yourself.

Hypomania

Hypomania is feeling a rush of energy, confidence, creativity and power. It’s thinking you are the best at everything, and that everything you think or say is amazing. It’s not sleeping for nights on end. It’s getting frustrated when people don’t agree with your outlandish ideas.

Some people experience a feeling of elation with hypomania, whilst others feel incredibly irritated. Hypomania often includes visible changes, such as talking super fast, darting from one subject to another, and being unable to sit still.

Mania

Mania is the same as hypomania, but cranked up. People can usually continue a ‘normal’ routine with hypomania (eg. going shopping, to school, work etc), albeit with difficulty, but mania will smash that routine to pieces.

When I am manic, my sleep is reduced to practically nothing. I will sleep 3-4 hours a night, for weeks on end. My appetite will be non-existent, I can’t concentrate on anything for more than a few seconds at a time, and I’ll think all my ideas are genius. I’ll go on huge spending sprees (or would if my partner didn’t take control of spends!!), and instead of buying things I want / need, I’ll buy things that are most expensive. Before we knew how to deal with manic episodes, I would often leave us virtually penniless. I try get jobs, create my own business, sign up to university. Before I experienced psychosis outside of a mood episode, manic episodes were also when I would hallucinate.

Bipolar disorder is a very individualistic illness, it can vary so much from person to person.

Some people with bipolar experience a mood swing every few years, and are able to lead fairly ‘normal’ lives. Others swing from one episode to another, and are ravaged by the illness.

Treatment generally relies on medication, at least in the UK, although a two-pronged attack of medication and behavioural therapies works best. Medications range from mood stabilisers (including anti-epileptic drugs) to anti-psychotics and anti-depressants. There is controversy on whether or not ADs actually help those with bipolar.

Different medications work for different people, and all carry a range of potential side effects. For some people with treatment resistant bipolar disorder, they will try a vast number of medications with barely any improvement in their illness.

Bipolar disorder is an incredibly hard illness to live with, and today is dedicated to spreading awareness and smashing stigma.

Please excuse if this post is crappily written, I’m living off very minimal sleep for the past week, am full of cold and have had a rough day for seizures.

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Today, we coped

We had a rough day today.

Seizure rage / shitty mood in the morning. Then on a dog walk our smallest pup was badly injured when another much larger dog ran into her. She hurt her front leg badly and it was very scary.

This was obviously incredibly stressful; she was in a lot of pain, she’s the sweetest little girl so it was awful to see, and thanks to benefits stopping for no reason and without telling us, we have no money.

Our benefit was suspended for a mistake that a GP wrote in a letter, we weren’t told they had been suspended and so had already missed a month’s money, and now they’re making us jump through a hundred hoops before they restart it. And, because that benefit was suspended, another has had to stop until the first has resumed.

We have literally no money.

As soon as we realised we had virtually no income we bought some dog food in so the pups would be okay, and have been on zero spends. Our amazing friend surprised us with half a dozen bags of food recently, it was amazing and we were so grateful, so we won’t have to use a food bank. But an emergency vet bill is not what we needed right now.

Thankfully my partner met up with his grandparents last week and we were given some belated Christmas money. We have £200 thanks to my partner’s family, and can scrape together £100 from our bank accounts if we abandon rent / emergency money.

We phoned the vet at the time of the accident and made an appt for this evening, but they only do ‘non-emergency’ (ie. if the dog’s not going to die) x-rays in the morning. So now we have the exam AND probable x-ray tomorrow morning.

In the meantime our little pup has been having a ton of cuddles. She has done SO WELL. She bounced back super quick, she hasn’t seemed in pain after the first hour (although can’t bear any weight on the leg), and it’s her wrist / around the dew claw that’s injured and not her leg, thank god.

With all this massive amount of stress, I’ve amazingly not been lost to a day of seizures or fallen on a suicide attempt or being overwhelmed with panic. I’m wondering if this is the CBD oil helping my MH symptoms?

I’ve been scared and anxious and sad, yes, but I think given the circumstances that is totally normal.

I’m actually proud of myself. Which feels weird haha. Usually a routine vet appt freaks me out so…yeah, I’m proud. And so relieved that my little one is doing as well as can be expected.

Now just please let the appt go okay, because I love my baby so much…

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Lose control, gain control *ed trigs*

From the age of 16 – 21 I battled anorexia.

I first recovered at 20 years old, then had  a slip when I was 21. My partner helped me recover, and for several years after that I maintained a healthy weight. I was then put on a variety of psych meds and gained a lot of weight, and was never really able to lose all of it again…regardless my body image was much better and I was enjoying food, even if I did have periods where I despised the way I looked.

This past month has seen those ED thoughts raise their ugly heads, and I didn’t know why (after 6 years since my last blip) it had happened…I figured it out a few days ago, I think.

I started having a lot of seizures within the past 6 months, and I think the lack of control and helplessness has definitely pushed me towards ED thoughts (lots of control there!), and on top of that one of my dogs is very sick. Not only a huuuuge stressor, but my initial descent into disordered eating at the age of 12 (and my ‘blip’ at 21) were triggered by family members being terminally ill.

Having these thoughts fill my head again after so long is truly, truly bizarre…and, if I’m honest, extremely exciting.

I am thrilled about the control, the inevitable weight loss, and falling back into old habits is like putting on a comfortable old pair of shoes. It’s comforting, it really is.

I’m hugely massive now, so losing weight isn’t a concern, and I’ll never get anywhere near my lowest weight. I’d love to have that BMI of 15 again, but lets be honest it’s never going to happen.

Regardless I’m happy to be falling back into this, but I won’t let it get silly.

I’ve only acknowledged and acted on the the thoughts for four days so far, but I’ve been pleasantly surprised with how easy it has been so far. I’ve lost weight already and the comfort it’s brought has been great. It’s just…so so weird after not even thinking like this for many years.

 

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Seizures

I have had so many seizures today that I have absolutely zero memories of the day.

It’s after 6pm and I don’t remember any of it. I won’t remember writing this.

I have a few snapshot memories (not a technical term haha, just what I call them), which are still images, like photographs, of things that have happened today…and sometimes I will know what has happened without knowing / remembering. But yes, that is today.

On a walk earlier a car had its’ full beams on as it’s really foggy here. The headlights gave me a seizure.

I was having a seizure on / by the side of a road, and my boyfriend was having to manage our 13 week old puppy and my 5 month assistance dog in training, AND alert oncoming cars that I was there. All in the fog!!

And that is why I never ever go out on my own 😉

Ugh. I’ve been filling my seizure diary in for almost four weeks now! No patterns to identify.

seizurediary1