0

Difficult days

Depression has been suffocating me for a few weeks now, and then yesterday I had one of the worst days for seizures I’ve had in a long time.

Things are pretty stressful atm and stress is one of my top 5 seizure triggers. Yesterday this really showed!

I had three big clusters of seizures, lasting over an hour each time. About 20 minutes of back-to-back seizures (each seizure lasting 2-3 minutes, with a 20 second break of me being somewhat lucid, then another rolling in), then 40-60 minutes afterwards where I act messed up…laughing spontaneously, shouting, repeating words for minutes on end, talking nonsense, swearing etc.

After each cluster I feel incredibly spacey and it takes me a long time to recover. So three of them in one day leaves me with little time to feel well, as I feel off before them too!

I finally came around late evening, so we were able to get the dogs out right at the end of the day and enjoy a takeaway. I hope today is better for seizures, although my depression is already making me feel terrible…better days had better be ahead!

Advertisements
0

Don’t stop fighting!

If anyone had told me in the last 15 years that I could feel like I do now, I would have told them it was bullshit.

I spent 8 years trying to get help and trying to feel better through the NHS, and for 11 years I was varying levels of suicidal. From attempts and crying so much at night because I just didn’t want to live, to even when I was happy thinking if there was a magic button that would stop me existing, I would push it.

There wasn’t one point in the last almost decade where I would have chosen not to stop existing if I could. I just didn’t see the point in living; feeling okay / manic was followed by huge crushing depressive episodes, and I was never truly happy or stable, or enjoying life.

For years I was told the same old bullshit by neurotypicals who thought positivity was the answer to all my problems – “Oh just think positive! Don’t give up! Happiness is a choice! It will get better!”

Well, when you’ve felt so bad and feel fighting so long, you truly can’t believe that. And being told it repeatedly only makes you feel worse!

Then I started having seizures, dozens a day, and life got even harder. For 18 months I couldn’t go anywhere, and I was learning about myself all over again – what I could do (very little!!), and the list of things I couldn’t do anymore was endless – go out alone, read, photography, travel (bus, car or train), go into shops (supermarkets, vets, museums, bookshops), walk in forests, walks by rivers or the sea. I couldn’t even have the curtains open at home, EVER – I lived in darkness.

Then we began finding ways to manage.

My mental health had already improved tenfold just by dropping all medical appts. No meds, no psychiatrist, nothing. For me, this has been the thing that has helped me most. I am not recommending others take this route, but for me it’s been incredibly beneficial!

For 5 years I jumped through every hoop the NHS offered – I took all the meds they threw at me, and lived with devastating side effects. I saw bitchy social workers, incompetent social workers, abusive GPs and scary psychiatrists. I had A&E visits and calls / visits to crisis team were regular. I was a mess.

Then I stopped going to appts, and the pressure was off. Previously I was always terrified of my appts, and began stressing about the next as soon as one was over. I saw my SW every fortnight, I would tell her how suicidal I was and she would do nothing. I didn’t know how else to get help.

By not going to appts, we had to figure it out ourselves, and the constant stress of appts was gone. We banded together, discovered techniques that actually worked (as oppose to all the bullshit SWs suggestions!) and our communication improved. I still have some intense mood swings, but for the first time ever I have stable periods in between, and we muddle through supporting each other.

We even had to find our own way to manage seizures, because the NHS didn’t care – they’re not tonic clonic so obviously don’t affect me at all, right?! Most medical professionals I saw refused to even believe that there were other types of seizures.

And, of course,  most GPs blamed the ‘symptoms’ on my bipolar and wanted to soley talk about my MH…I would try explain that I have auras, identifiable triggers (including bright and flickering light), and EVERYTHING tallies up to focal seizures. But they wouldn’t even consider it.

They made me go through a completely uneccesary blood test before agreeing to put me on a waiting list to see a neurologist, which will be about 12 months. In the meantime they’re happy to leave me unattended with these seizures, which were (/are) ruining my life. No medication, no support, nothing.

So again, we banded together and figured out huge improvements ourselves.

My seizures are drastically reduced, I feel much more confident about having them in public (see previous post!) and they’re under control even if they’re not technically under control, because I’m still having about 15 a day 😛

So with all this shit, for the first time ever, life is good!

For any spoonies reading this, my message to you is: If you are struggling, fight for things to get better.

And no, I am not telling you to ‘think positive’ 😉 I’m just saying, don’t give up. Keep fighting for improvement, be it trying to eek some use out of the NHS, or finding things that work for yourself.

If you have a significant other, TALK!! Sound things off against each other, everything, and problem solve together. Be completely honest about your symptoms, your feelings, and what would help. Ask how they are doing, and what you can try do to support them too. Talk, talk, talk!

If you are disabled and can’t work, find little things to keep you busy and give you structure. I’ve found this really helps me.

Small hobbies that are easy to do include:

  • Adult colouring books
  • Collecting objects (I collect buttons and sea glass!)
  • Caring for pets
  • Hiking / walking (disability dependent)
  • Reading
  • Reviewing things (cider, movies, dog breeds, ANYTHING!)
  • Doodling

I’ve found hobbies that you can sink a lot of time into are super helpful. This could be…

  • Collecting sea glass
  • Volunteering at an animal rescue centre
  • Collecting litter
  • Traveling to beautiful places and taking photos
  • Video games
  • Blogging

Third important point: don’t EVER feel the need to push yourself past your limits.

You know your body and your conditions better than anybody else. If you need a full day lying in bed because your symptoms are crippling, do it. If all you can do in a day is one teeny dog walk, that is perfectly acceptable.

Listening to what your body needs is not  you being lazy!!

This is something I struggle hugely with. I come from a family where achievement is measured by grades or how ‘good’ your job is. From the time I was 12 there was a ton of pressure on what job I wanted when I was older, and by the time I was 16 this was suffocating. For an adult with disabilities, having that instilled in you is extremely stressful, and left me with constant shame and guilt.

But I’m slowly learning that my disabilities are NOT MY FAULT. I’m doing the best I can and I’m doing as much as I can.  If most people were given my chronic illnesses for one day it would floor them, so the fact I walk my dogs, care for my pets, and blog is phenomenal 🙂

I didn’t ask for this life. I would love to work. But I can’t, and  I refuse to feel guilty for being ill. My ‘job’ is to keep myself as healthy as possible!

I don’t really know where I’m going with this post anymore haha.

I basically wanted to say that life can get better. That you’re amazing for dealing with the shit as best you can, and  for knowing your limitations. That if you find help / things that work in unusual places, that’s AMAZING!

I had a GP appt a few weeks ago, and she was awful. She hinted heavily (and repeatedly) that I should get back in touch with MH services…and I was sitting there thinking “fuck you! Why would I *ever* do that?” 😛

Every living thing learns through positive reinforcement – we do what works. Keep doing it, and don’t let anyone make you feel guilty for it ❤

 

 

3

Smashing stigma: shitty GP!

Oh we had a funny appt today 😀

I had blood tests done about a week ago, so I can finally be put on the waiting list to see a neurologist in regards to my seizures. If they are epileptic seizures I can then be put on medication to try stop them; if they’re non-epileptic seizures at least I know they’re not fucking with my brain, and we can try find ways to manage them.

The GP today was a HUGE bitch. So much so it was funny!

The appt started with her asking if I could take my goggles off, to which I replied I could, but the polarized lenses help prevent seizures. Strike one against me, she didn’t know what polarized lenses were and obviously hated feeling less superior.

I began telling her about the seizures (telling her about my auras, symptoms during and after).  I told her about CBD oil, and that we’ve identified several seizure triggers (she didn’t ask what they were or give me time to tell her them).

I showed her a recording of a seizure, and she responded with “Well what’s supposed to be going on here, because it looks like you’re just watching telly”.

OMG hahaha, what an idiot!! When I’ve just told you all the symptoms, and wow well done for showing you have no knowledge of seizures as anything other than tonic clonics / grand mals!!

This was the video btw

She spent ten minutes (meaning the appt ran over) talking about my MH. She kept trying to belittle or insult me, using my MH as a weapon, and got increasingly angry when I refused to be belittled or ashamed.

Some of the questions include

  • When was I last on medication
  • When was I last seen for my mental health
  • Why aren’t I receiving help now
  • What is my mental health like now
  • Why do I think my MH is better now
  • (weirdly) Did I go to a public school
  • (after staring VERY pointedly at the scars on my arm) Do I have a history of self-harming? Why? For how long?

I was able to answer these questions extremely confidently, and this also annoyed her. Me and my partner joined as a team to explain the stress of appointments were extremely detrimental to my MH, and the fact they never helped anyway meant all they did was make me worse. I am doing better now, mentally, than I have in almost a decade.

She then asked me if I worked and when I last worked, and did not approve of the fact I hadn’t been able to work due to disability for so long.

After this she began talking about my seizures, but obviously referring to them as “episodes”. She began telling me that they may not be “true seizures”, and I interrupted to say we were very well aware about non-epileptic seizures, but obviously it’s worth seeing a neurologist because if I do have epilepsy, I can get treatment.

Everytime she spoke about epileptic and non-epileptic seizures, she referred to them as ‘true’ and ‘not true’ seizures. Well done for perpetuating the stigma against PNES!!

She said we might want to collect more video footage before the neurologist, and we said we had about a dozen videos spanning a year. She began to say we might want to record how many seizures I have a day, and we interrupted her to say we use a seizure tracking app to record how many I have, triggers, auras etc.

By the end of the appt she hated us, because I wouldn’t be embarrassed about my history of MH, and we were so knowledgeable about all my conditions. We (my partner and I) came out laughing, and feeling like a really solid team 🙂

0

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!

0

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.

0

Screwed up kids *trigger warning*

I was one of those kids that was obviously a little messed up.

I had my first suicide attempt at 10 years old; I tried to flush my head down a toilet. A teacher found me, and it was never mentioned again. I began self harming around the same time, and sustained injuries including a dislocated thumb whilst I was still at primary school and broken wrist at 13. I was totally unaware of the idea of self harm, cutting as a way to hurt etc.

I never had any confidence. I always thought I was a disappointment, I was excruciatingly shy, I hated my weight and began restricting my calorie intake whilst still at primary school.

My Grandad fought lung cancer for several years, and for a child I was too involved in his care. I was 11-13 years old, the responsibility was huge!

Around that time, I began restricting what I ate in earnest. I would go all day eating nothing, then binge mid-afternoon before anybody returned to the house. By sixteen I was eating under 200 calories Mon-Thurs, binging on Thursday, restricting below 500 up until Sunday, and then on Monday the cycle would repeat.

Compulsive exercising snuck up on me too; what started as ‘just walking home from school’ (a 45-60 minute walk) progressed to hours of exercise every day. At my worst I was eating less than 500 calories a day and exercising for a minimum of four hours.

I lost close to 3 stone over a period of about 5 months, and I was slender to start with. Despite the obvious transformation and my clear struggle with food, my parents seemed oblivious, with my mum even feeding into my disordered thinking by complimenting me on my weight loss.

At fifteen my parents accidentally saw some self harm on my arm. I was lying on a bed and my pyjama sleeve had ridden up far enough to expose cuts. Instead of support, I was ridiculed and called ’emo’. That was one of the lowest points in my life.

At school teachers knew I was battling demons, but nobody did anything.

Throughout my teenage years I had a dozen suicide attempts, wasted years starving my body, and was filled wityh despair, darkness, lonliness and self hatred. Shying away from family events, plans with friends, and instead holing myself up in my room thinking about how much I despised myself, how I’d be better off dead, and exercising crazily.

I received zero help until I was 19, when my boyfriend said I needed to go to the Dr’s as I had been suicidally depressed for several months. Despite my first suicide attempt being at 10 years old, I wasn’t pushed for help until 19.

When you’ve been dealing with mental illness so long, and since you were so young, you don’t realise a) how sick you are, or b) how ‘wrong’ your emtotions and thoughts are.

I didn’t realise that the depth of my despair wasn’t normal. I didn’t know most my peers didn’t feel this way.

The NHS is a shambles with MH support, and I basically never received adequate care. My bf has done more for my mental health than the NHS ever did. I still have extremely poor body image. I still have periods of battling suicidal thoughts, I have unchecked bipolar, I’m often overwhelmed with anxiety…and now I have psychosis and seizures thrown into the mix too!

But mentally, I am stronger. I feel better in myself.

Who knows if having support when younger would have helped me now -would I have been a fully functioning member of society? Idk. What I can tell you is that I would have loved someone to help me back then.

I would have loved someone to sit me down and say “look, you’re not okay. I know you need help and I’m going to make sure you get the help you deserve.”

I would have loved anything to make me feel less alone and scared.

It’s a crying shame that CAMHS (the children & adolescent MH services) are a sack of shit in the UK. We are doing a huge disservice to young people by brushing them aside when they are asking, crying, begging for help. How many adults are still battling such fierce demons because as children they were ignored?

It’s not enough to say that every childhood has rough bits, that every teenager goes through periods of being ‘sad’…that’s not okay.

  • Kids can have mental illnesses, kids can need support.
  • Teenagers can be lost in the darkness and need someone to guide them back to light.
  • Eating disorders are hell, no matter what your weight. Not everybody battling a severe ED is underweight!!

Everybody deserves to be listened to, and to be supported

That is a *huge* thing lacking in the NHS. They don’t want to listen, they want to wash their hands of you and move you along as quickly as possibly. You won’t feel heard, you won’t feel validated.

Hell, I had a GP appt last week to talk about my seizures. The GP let me say two sentences about them, said they didn’t sound like ‘typical’ seizures as I wasn’t convulsing on the floor (oh I’m sorry, have you never heard of simple / complex partial seizures?!) and told me I’d have to wait 9+ months to be seen by someone with knowledge about seizures…she blamed my MH entirely, and didn’t want anything to do with that.

We shouldn’t be ignoring these ‘broken’ kids…we should be reaching out to them and helping to glue them back together.

When I was a teenager, nobody knew where to turn for help – not me or my friends. They were scared for me at various points, and desperately wanted an adult to help out – when I fainted due to not eating enough, when they saw my arm and it was laced with dozens and dozens of cuts, when I’d taken an over dose…they were frantic to help, but had no idea how. Who could they tell?

Not a teacher, who wasn’t approachable and would just tell my parents without trying to help me at all. Not my parents, who (at the time) reacted to everything with either ridicule or anger…where do you go? Who do you tell? What do you know at 13 / 14 / 15 years old?

There needs to be more understanding. More information. Mental health needs to be taken seriously. There needs to be adequate support and treatment for those struggling.

The world keeps talking about how much money is being poured into the NHS for mental health. Celebrities are all coming out saying they have depression, anxiety, bipolar, and there’s no need to hide it…but there is.

There is SO MUCH stigma in the world. People are disgusted by mental illnesses. People are scared by anything other than anxiety or depression. People think you are faking it. The NHS doesn’t want to help those suffering from mental illness; benefits won’t believe you need assistance if you look physically well.

We need a huge overhaul here.