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Victorious yet anxious

Eight days ago I started using a new CBD oil, from CBD Brothers. 

I wasn’t feeling too hopeful, as I’ve tried five different CBD oils before and none have ever done that much.

Fast forward to this week, I’ve had THREE days with less than three seizures per day, and today (at 6:15pm) I’ve had just one seizure!!

This hasn’t happened in over 2 years!!!

Whilst I’m absolutely over the moon, it’s made me incredibly anxious too…will the NHS be even less interested in getting me diagnosed, if I’m having seizures less often and have found something myself that works? Seizures are the only thing the DWP seemed to take seriously – if I’m having less, will they reduce my benefit?Even though I’m still spending all day (other than an hour’s dog walk) hidden inside behind dark curtains, with the lights off…I can’t imagine they will listen.

I feel like such a dick, because here I am panicking about everything after one day of having just one seizure…but then I think hey, of course it’s going to feel strange and scary, for the last 2+ years you’ve been having dozens of seizures a day, and ANY type of big change can trigger anxiety.

So I’m just gonna have to treat myself gently, and focus on how INCREDIBLE it is that this CBD oil is helping my seizures. I could get a life back, and that is something to be celebrated, not feared.

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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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Knots

My life is a tangle of various chronic illnesses.

A few weeks ago my seizures were atrocious, and my psychosis was incredibly difficult to live with. Then I had six days with minimal seizures, and during this time my mood was incredibly low and I spent a lot of time crying and hating myself.

Yesterday my seizures started up again. I had over a dozen yesterday, I had a few this morning and then starting around lunch time I’ve had absence seizures at fairly regular intervals for the past three hours.

In the background, as ever, there’s the insistent pressure of anxiety.

Ugh. Tired of this. Was really hoping my seizures would stay low until after Christmas, but it’s not looking that way. I’d love to have a nice seizure-free Christmas and be able to remember it!!

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Non-epileptic seizures

So it seems that what I thought were dissociative episodes are actually non-epileptic seizures, also called functional seizures and dissociative seizures.

I have to have an appt with my GP soon for med re-fill (I haven’t had an appt in a long, loooong time, so this is terrifying) so I’m going to talk about NES with him too. Ugh.

I’ve been having at least one seizure a day. I really don’t know why I’m having so many. Build up seems to last about half an hour, I’m comatose for 10-40 minutes, and then I feel groggy for a good few hours afterwards. The other day I lost six hours to a sezure. I can’t remember almost any of it, and the seizure itself only lasted 30 minutes 😦

My pup is awesome whilst I’m having a seizure and also alerted me a few times before having them, so we will be working on this and I hope she can become my seizure alert dog.

The seizures are really scary and seem easily triggered. Gog doesn’t even want to leave me alone for a second (seriously, when he’s on the loo he’s shouting down to me!!!), because if I have a seizure I could hurt myself, our pup could chew through a wire, anything could happen. It’s really scary, for both of us.

Doing so much research, Gog and I have worked out the best ways that we can help prevent a seizure, bring me back from one etc. One thing we do is with a dog toy, a ball covered in bobbles, and one bobble is missing. My partner passes me it when I’m coming out a seizure and tells me to find the missing bobble.

I didn’t need this on top of Bipolar and psychosis…but we’re finding ways to make it less terrifying. So.

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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 😀

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I’m so tired

I’m so tired of fighting. The constant changes are exhausting and horrible.

My partner turned to me in alarm this evening and said “What’s going on with you sweetpea? You’re flitting from happy to sad so quickly.” I replied, completely expressionless, “I’m bipolar, what do you expect?” Which at least is amusing, even if that isn’t what bipolar is at all!

My partner was dot on though. I’m so tired from yo-yo’ing and having to deal with super fast switches of energy and impulsiveness, happiness and sadness, confidence and hopelessness.

I’m tired of trying so hard to focus, on ANYTHING, and it being such a struggle because all I can hear is things that aren’t real and I know, I *know*, that there’s something sat watching me at the other side of the room – but don’t look, DON’T LOOK, must appear normal.

The other day two noisy things played at once on our computer, a game and some wrestling my partner was watching. The noise immediately drove him to distraction and he raced to the volume to mute it whilst he got it sorted. He literally couldn’t cope.

Grinning, I said “Now you know what auditory hallucinations are like!”

Although it was a joke, it was true. Fighting so hard to concentrate, understand what people are saying to me or what I’m reading or watching, AND trying to appear normal is just…exhausting. And impossible.

Please world…just give me some stability. Just give me some moods that don’t rate 10/10 on the richter scale. Just give me something.

Again, anybody reading, please don’t tell me that things ‘will get better’ or that I should ‘go see a professional’. It won’t help, even though I know you mean well, and will just make me feel more hopeless and alone. Thank you for your understanding.

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Just let me know what you’re doing, brain…

One of the things I’m struggling with SO DAMN MUCH at the moment is the unpredictability.

When I had severe bipolar I thought it was the worst thing ever.

Months and months of suicidal depression followed by weeks of psychotic manias, on repeat, over and over. I really thought it was the worst.

But I’m struggling even more now that my mood swings aren’t predictable and don’t follow a pattern. Alongside the constant psychosis (which is really, truly awful. Like living in a horror game) I now have extreme mood episodes that last just days.

It’s exhausting and confusing and upsetting.

It makes planning days impossible – what we might have wanted to be a nice relaxed indoor-day can’t be because I’m bouncing off the walls and if we don’t go out I’ll do something ridiculous.

Day visits with my parents have to be cancelled because my psychosis has reduced me to tears. Plans for enjoyable walks with my beloved partner and dog in the countryside abandoned because I’m so depressed all I can think about is suicide and I can’t leave the house.

I’m talking a day or two so manic I don’t sleep. Maybe a week where all I suffer is psychosis, constant, LOUD psychosis. Then depression where I can’t imagine, and don’t want to, living like this anymore. Then psychosis. Then depression or mania or more psychosis.

Yesterday and the day before I was manic. Can’t-sleep-spend-money manic. Today started okay. I felt a little off but I think I had a med-head or a psychosis overload. Late this evening I noticed myself getting panicky and sad and anxious.

The feeling got worse and more extreme. I had a panic attach. I freaked out.

There’s this tight feeling of overwhelming dread inside me. I’m struggling to breathe normally and behave normally and look normal on the outside. I can’t talk about this with my partner and I don’t 100% understand why.

I’m scared and trapped and oh so sad and numb and blank. I feel so completely overwhelmingly depressed and hopeless.

I could tell myself to just wait until tomorrow, because how I feel is changing almost daily now, but everything I switch between is horrible.

Mania – frustration, a frantic need to move and talk and beand zero need for sleep.
Depression – hopelessness, numbness, despair.
And psychosis – voices, scary thoughts, scary people, visual hallucinations that are all real, so so real.

This is all I get. This is me, this is my life.

Please don’t anybody advise me to go see a professional, or that things will get better. I know you mean well, but neither would be very helpful or appropriate right now. Thanks for your understanding friends.