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Things have been difficult, but I am back!

An angry update against the NHS ๐Ÿ˜‰

I first went to see a GP about my seizures last summer.

I saw an awful old witch of a Dr, who spent the 10min appt glaring at the scars from decade-old self harm on my arm, saying my seizures just looked like I was watching TV, & asking repeatedly about my mental health.

We later found that on the neurology referral this Dr had already said I was having “psychogenic seizures” (that is, triggered by emotion, stress, mental illness – we’d told her my emotions didn’t affect my seizures, of course). She also mentioned in the referral that I had self harm scars in full view (it was summer, I was wearing a t-shirt due to the heat!!), & referred to my seizures as “funny turns”.

Since then, when discussing my seizures with *every* GP, it was a battle to remind them my seizures weren’t diagnosed as ‘psychogenic’. I had one GP tell me numerous times “psychogenic seizures aren’t voluntary, it’s a fight or flight response”, “you can’t help it, you’re not doing it on purpose”, & she wanted to refer me to a psychologist to help me overcome “past trauma” that was triggering these ‘episodes’.

I wanted to scream!

STOP INSISTING THEY’RE PSYCHOGENIC SEIZURES, ESPECIALLY WHEN YOU LITERALLY JUST ADMITTED YOU KNOW NOTHING ABOUT MH. STFU!

My neurologist was the only one who was respectful. She wasn’t happy at all with how long I’d had to wait, that I’d been left alone like this, & that the GPs had jumped to psychogenic seizures.

In the year-long wait it took to get an EEG, I discovered that I had POTS. That is, Postural Orthostatic Tachycardia Syndrome.

And hey, what do you know, there’s an entire bracket of non epileptic seizures that was overlooked simply because I have bipolar disorder!! Physiological non epileptic seizures, triggered by conditions that cause physical changes – usually blood pressure, oxygen to the brain, or blood sugar…OH HELLO POTS!!

(this is my hr when I stand up)

After being told, repeatedly, that my seizures were ‘all in my head’, & that my mh is the cause, it turns out they’re triggered by a physical condition. And once again I had to discover that myself, because the NHS missed it completely. They were too busy blaming my bipolar disorder for everything ๐Ÿ™„

All the symptoms I’d been to the Dr’s about (heart palpitations & dizziness first, in 2010), I was told were caused by my mental illness. I’ve been getting sicker & sicker, and nobody would listen or take me seriously…I have a mental illness, obviously that means I’m immune to physical conditions?!

This way of thinking is absolutely not okay!!!

I shouldn’t HAVE to research & diagnose all my fucking conditions. I shouldn’t have to find ways to prove them to Dr’s at appts…Dr’s who then become so worried, because my HR is so high when I’m just sat in a chair, that they push me for an emergency ECG in case my life is in danger!!

We can’t keep blaming any and all symptoms on MH, simply because the person has a diagnosed mental health condition/s. I’ve been left totally alone with zero support for my seizures (dozens every single day) for over a year. My life crumbled to nothing. I’ve had falls, black eyes, bruises, dislocated fingers in falls…and it was blamed on my MH, it was blamed on me!

Now I know I have Postural Orthostatic Tachycardia Syndrome, my life has actually improved. I know why my seizures happen, & although I can’t prevent them, I’m able to go out and enjoy more because I have a wheelchair now. For the first time in years I can be around light, I can go to museums, I can eat out. The wheelchair keeps my heart rate lower than if I was standing/walking, it allows me to rest when needed, & if I have a seizure because my HR gets too high, I can’t fall. It’s AMAZING, and it all got missed.

For a year I couldn’t go out, socialise, go shopping. I haven’t been able to go to the cinema since 2015. I was living in darkness, because we thought it was the light triggering my seizures – think about it, when you’re around lights (sunlight through trees, fluorescent lights, flashing lights), you’re outside, which means you’re standing & walking. Which meant I was having seizures. I’m also more photosensitive due to my POTS, so we weren’t that far off the mark.

For over a year I didn’t go anywhere, I sat in the dark…and I was left like that! Because the NHS jumped immediately to psychogenic seizures, because I have a mh condition. I missed out on a year of my life!

Yes, I am pissed off. No, this isn’t okay.

Thank god me and Lyle are strong, are resilient, & have found a way to make life liveable!

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Blinded by depression

I’ve been sapped into a huge depressive black hole.

The depression has consumed me for the past few weeks, and it shows no sign of abating. There are a few little chunks over in this post on my other blog, if anybody is interested.

A lot of Spoonies have been sharing these to try end stigma and fight the shame. Here is mine.

I’m sharingย some colouring from the past year. No words needed.

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Something to remember

I saw this today and found it immensely helpful, so reposting.

You are not ‘bad’ or ‘wrong’ if you:

  • Have low to no empathy
  • Have hyper empathy
  • Have a personality disorder
  • Have more than one person in your mind
  • Have scary / violent thoughts
  • Can’t take a shower or brush your teeth very often
  • Don’t have the energy to interact with people everyday
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Panic & dissociation

My anxiety and panic has crept up recently.

I’m not at extreme panic I-have-to-die-immediately stage, but I have moments where my heart races and I feel very scared and just worry about everything. Or moments where I’m fighting off a full blown panic attack and I don’t know why.

I was out on my own yesterday walking our youngest pup, and had this horrible insistent ‘know’ (across between a fact and a voice in your head telling you it’s true?) that absolutely everybody was staring at me, talking about me, following me…not helpful, not nice.

Called the walk short and as soon as she’d done both toileting we fled back to the house, where I spent the next hour fighting tears and a panic attack.

Yesterday or the day before, my partner was out collecting food and I started dissociating. Completely out the blue and badly. When I ‘came back’ my pup was on my lap craning round to look at me, and I was stroking her back repeatedly. Bloody love that dog.

Does anybody else dissociate in different ways btw?

Sometimes it’s like a blackout; I’ll have no idea what I’ve done or where I am when I ‘wake up’. I’ve come to walking in the middle of a field before and not had a clue where I was.

Another time I was walking our Collie cross a few days after a ‘blackout’ and saw lots of my underwear and socks scattered on the ground – apparently I’d done that whilst dissociating, god knows what anybody who saw me thought!!

Then I have one where it feels like I’m not in control. This one causes a lot of panic because I’m walking, talking and acting almost totally normal, but it’s not me controlling myself and it scares me because nobody else notices. I want to get across that someone has control over my body but can’t.

The third is where everything is in slow-mo and I have to fight hard to move and talk. Sentences can take a full minute to say and words get muddled.

I don’t know why I have different episodes, or what triggers what. The blackout’s by far the worst as I remember literally nothing from it…I have no idea what I got up to and obviously don’t know when it’s happening.

It really, really scares me thinking about what I could ‘wake up’ to.

Sometimes I start writing a blog here and it suddenly derails and evolves into an entirely new topic. That’s what happened tonight, I didn’t even mean to write about dissociation ๐Ÿ˜€

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Depression, replaced with what?

That awful, all-encompassing depression has gone.

I don’t know what it’s left me with. I can’t tell if I’m manic until I’m really manic, flying high, and my partner’s kinda the same. If I’m hypomanic right now, it’s weak, I can’t tell ๐Ÿ˜›

I’m hella irritable, I have a decent amount of energy and motivation, and when I’m not flying off the walls in a rage things are going okay. Psychosis still a major issue, but it always is and I don’t count that as an indicator of mood.

I’ve got more things done with my pets today than I did in five days of depression. It’s crazy quite how much your energy levels and capabilities change with your moods. That’s something I wish more people understood.

I wish I could swallow or erase the irritability. It’s SO HARD (read:impossible) to contain it, and it ruins everything around me. I feel so damn sorry for my partner >__<

I get scared whenever I feel like this, I feel like I’m totally ruining our relationship and he’ll stop loving me.

You could argue this is ridiculous, he understands it’s an illness, he’s stuck byย me through harder times yadda yadda yadda…that’s true, but it doesn’t mean my symptoms don’t wear him down over time. A bit of irritability might not seem a big deal, but it shows itself as hatred and lashing out verbally, and that’s awful.

On top of that he never gets any respite. I never have okay days, so he never gets any relief. I hate myself for what I put him through.

It’s tough, but we adore each other…that has to count for something.

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Sometimes days can be good

Mostly, this blog is a lot of doom and gloom, because a lot of our lives are difficult and miserable.

Well, today we had a really, really good day ๐Ÿ™‚

We went to a kite festival, you can read all about the hilarities and see pics over on the other blog.

Not only was today a good day and we had a lot of laughs and a lot of fun, but I coped really well being out in public too, and at some points we were even in fairly busy areas. A few people even came up to give us advice about kite flying, and I didn’t think ‘shit they’re plotting to kill me’, I managed to respond to a few even!

The past few days have been the roughest since starting on Citalopram.

I don’t know why, but my anxiety has been highest than it has been the entire time, and my mood has been low. I’m still doing much better than pre-Citalopram times, but it hasn’t been fun.

Today, however, has been lots of fun ๐Ÿ˜‰

Savour the good days!

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Caffeine sensitivity

Gog here. Recently we thought Anon was accidentally addicted to Codeine, after she had to take it a fair bit due to migraines.

She experienced a weird swimmy head when she hadn’t taken it, so we thought her body had become dependent on it. It was close to a week before the head went away.

Now is seems it wasn’t the Codeine causing issues after all (which makes sense, as she only needed one pill a day, and you can take up to 6 pills a day for 3 days in a row I think) – we think it’s the caffeine!

For the past few weeks we haven’t had Anon take Codeine when she has been in pain, instead we have used Ibuprofen or, when she started Citalopram, Paracetamol – Ibus shouldn’t be taken with Citalopram.

Today she took some extra strong Paracetamol, and about half an hour after taking two pills she was off her face.

Jittery, ‘numbly’ anxious, but with a ‘swimmy head’ – she says it feels kind of like being very drunk, or like her vision is lagging. Alongside this she can’t feel things properly, she feels sort of numb, her heart is faster than normal, and she can’t control what she is doing.

The only thing it could be is the caffeine, and it would make sense because the Codeine had added caffeine too!

Holy shit, I did not know people could be *this* sensitive to caffeine!!

Good job she doesn’t drink coffee, tea, energy drinks or pop! She does eat chocolate fine though. Here are a few articles I found on caffeine sensitivity:

Mental Illness or Caffeine Allergy?

http://www.doctoryourself.com/caffeine_allergy.html

http://www.huffingtonpost.com/2015/02/20/varying-effects-of-caffeine_n_6671788.html