2

Broken

I had another broken day today 🙄

Yesterday we tried to have a nice day, it was an epic fail…I almost ended up in hospital due to having so many seizures, the day was awful & very much ruined. I was left asking myself why I even try to do anything/leave the house anymore 🙄

Being so physically unwell obviously takes a toll mentally, and after yesterday, today I’ve just been struggling hugely. I wanted to hurt myself, I felt suicidal, same old bipolar crap. Add to that a pet died unexpectedly and my bf’s parents are being absolute dicks…and yeah, it’s been a bad day.

I started to feel a little bit better this evening. I just get tired of all my disabilities have taken from me. I get tired of not being able to leave the house, or have a life, and yesterday showed that so clearly.

I posted this photo yesterday online. This was me after I’d attempted to leave the house; I’d had 29 seizures, felt dreadful, and a migraine had hit me as a result of the high number of seizures. I might have an invisible disability, but that doesn’t make it any less real…

I can’t remember if I posted about this already or not (I have no memory anymore, my brain can’t really produce new memories very well) but my bf called the hospital about my MRI results, and also asked about my EEG. He was told by the hospital that’s too far for us to travel that they have sent off two referrals to the local hospital for my EEG, because they want it done asap, but the local hospital just aren’t acting on it…how is that okay?!? 😩

I’ve had significantly less seizures today but my mood is in the pits…I’ll take that over the other way round, I guess!

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0

Good day plz?

My parents are nana are coming up today, to celebrate my birthday early.

For me it’s gonna be a big day out – 5 hours of being out in the world; eating lunch out and visiting museums. 

Yesterday I was suffering for pushing myself too far the day before. And by pushing myself, I mean and I went out for a few hours in the afternoon, then in the evening spent 3 hours researching epilepsy medication and taking notes…that was way too much, and I paid for it dearly 😅 I went to bed exhausted with a headache, woke up midway through the night with a migraine, and woke up in the morning with a migraine too!

Spent all day yesterday up until 5pm sleeping, but finally felt better in the evening and managed a short dog walk.

Hoping today will be a good day out…fingers crossed for no pain, not too many seizures, and that I don’t end up paying for it tomorrow!!

3

Spoons, disability, stares

We had some friends stay recently, and boy did it take it’s toll on my body!!

I actually had a really fun time, and the friend who was here longest (four days) was so fantastically great about not putting pressure on us to do things, or on me to recover faster after seizures, but doing basically anything uses way too many of my spoons, so the trip was always gonna leave me knackered XD

Here are some photos of our adventures though!

On the final day I woke after five hours sleep to an awful migraine. I swallowed codeine and paracetamol throughout the day, whilst also trying to force my way through a drastically increased number of seizures…the first four hours of the day (walking our dogs, traveling into town and eating) were awful, but finally I started feeling better and was able to enjoy some museums 🙂

Our friend really was wonderful, and we noticed him doing several adorable things to help and put us at ease. This ranged from joking about brains being weird, to reminding us he could go off alone if we needed him to, and even catching me as I was falling during a seizure. Having that extra support was really appreciated!

I got a lot of stares one day, a really posh town where when I wore my goggles there last time (this was before we’d written EPILEPSY on the side) we got a lot of stares and rude comments. Well the same thing happened this time…wtf is it with that place?!?

The only comment came from kids, but there were plenty of people (generally older people) who gawked at me unapologetically. One man I stood in front of and stared back until he finally looked away, and my partner also told  a group of old woman that it was rude to stare.

We also had an old woman who, after I’d left my partner at the counter to pay, asked him “Are they those glasses for dyslexia? Do they have dyslexia?” UUUUGH, MIND YOUR OWN FUCKING BUSINESS!!

It gets exhausting -_-

Today my partner phoned up a helpline to try apply for a disabled person’s bus pass, as we realised we hadn’t tried since I started having seizures. We were told immediately that now I will qualify.

In order to prove that I would be refused a driving license (which is the bracket I fall under for all my disabilities – the others are legally blind, have no arms, can’t walk far, or have a severe learning disability), I first have to apply for a provisional driving license. So that I can be refused.

WHERE IS THE LOGIC THERE?!?

Haha!! So today we went into town and I got a passport-style photo ready to send off for my provisional. The owner of the photo shop was wonderful, we phoned in advance to ask if they could avoid using flash as I have epilepsy, and he said they don’t use flash but there are several lights / machines that are bright or flicker, so to send my partner in and notify him when we got there.

We did just that. When he saw me in my goggles he smiled and said “Wow, you really do have it bad don’t you?!” This wasn’t derisive at all, and made me feel understood. I do have it way worse than 98% of people with epilepsy in regards to how sensitive to lighting I am, and I’d rather that was acknowledged than he gave me some BS positivity!

He turned some things off and took the photos as quickly as possible, and I didn’t have any seizures! 🙂

I also tried to legally change my name for my bank account today, but the woman assisting us was an a-hole. She said that because our ‘witness’ wasn’t a solicitor it wouldn’t count for anything (this isn’t true, we checked when we were choosing our witness!), and when she got to my title of Mx, she turned to me and said “So you’ve just made that up, have you?”

No, Mx is a title just the same as Ms, Mr or Mrs. It is accepted to stand for Mix, so perfect for a non-binary person like me, and is legally accepted in the UK.

Ugh.

She sent off the forms regardless, but said head office may not approve it as “it has to be witnessed by a solicitor”. Bleh.

Also, my littlest turned one a few days ago! 😀

tollersbday6

0

CBD oil blues

CBD oil has not been good to me.

CBD oil is quoted as helping EVERYTHING, from anxiety disorders, depression, epilepsy, to stroke and cancer. It’s natural, and supposedly has no side effects. It starts working within a few days to a week, and the results are amazing.

Only that hasn’t been the case for me at all.

I’ve tried A LOT of different CBD oils, various strains, strengths and from various companies. In the UK the strength of an oil is measured in %, I’ve had oils vary as much as 3-30%. The 30% was one of the least effective!!

First thing to be aware of, dosing instructions from the companies can’t be trusted!

Second thing, you can indeed have side effects from CBD oil. For me, this was migraine. I also know somebody else who experienced migraines when starting CBD oil. It also messed with my sleep depending on the dose; low dose and I slept too little, with a higher dose my sleep was deep and peaceful.

The most effective oil for me has been a full spectrum 4% CBD oil with traces of THC. The company recommended 3-12 drops a day, which did ABSOLUTELY NOTHING for me.

A friend told me most oils require a daily dose of around 30 drops, especially for seizure disorders. They are notoriously hard to treat. Sure enough we upped my dose to 18 drops a day, and saw a huge improvement.

It reduced my triggers (eg. cars going past with headlights on no longer caused seizures, in fact they barely made me feel spacey). It shortened the length of my seizures, and meant I bounced back / recovered from a seizure much faster. It also greatly reduced seizure rage, which was incredibly important to me, and I felt better in myself – more “me”!

However, after three days with less than a dozen seizures and feeling really good (for me 😉 ), I had to switch to a new CBD oil as mine had run out.

This one is an 8% CBD oil from the same company, but it’s an entirely different strain.

Because I had to switch, I fell right back down the epilepsy pit. Today has been fucking awful, I might as well have been taking nothing.

I’ve had a lot of LONG seizures, experienced a huge cluster, and was left feeling extremely physically unwell with a migraine. I haven’t noticed any triggers today, nothing that would usually cause seizures; no bright lights, missing sleep etc. It’s ridiculous.

We were going to start this oil at a low dose and gradually build it up, but fuck that I need relief!! Instead of a starting dose of 5 drops we’re doing 14, tomorrow will be 16 drops and the day after 18. We’ll see how I’m doing then.

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Migraines

My head is so sore lately.

It doesn’t take much at all to trigger a headache, and it doesn’t take much at all for it to lead into a migraine. My neck’s being a pain in the arse too, any time it even slightly aches, it decides to make a big deal out of it and cause a headache / migraine…me and my neck are arch enemies XD

My mood’s weird today. I’m not sure if maybe it’s not bipolar-related but actually seizure-related, and I’m just in for a tough day seizure wise.

I never knew seizures affected mood so much, but before certain seizures I either feel incredibly depressed or full of rage. So much rage I am scared I’m going to hurt myself (last time the urge to punch through glass was so strong I had to sit on my hands and bit my tongue until it bled) or my partner. After seizures my mood tends to be one of two ways – very sad and very teary, or completely off the walls energetic crazy. It is exactly like being manic, but it’s not mania, it’s just seizure after effects!

So it’s all really weird and confusing.

To say how many stressors there are at the moment though (new puppy, physical pain, seizures to deal with) I feel like we’re actually doing pretty good…no consistent suicidal urges for days, missing sleep but coping, dealing with seizures without wanting to curl into a ball under a duvet and never emerge ever again XD

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New look for the blog!

I changed this blog’s theme today, what do you think? 🙂

Today has been a fairly okay day mood-wise, but I have been in A LOT of pain. It started as an aura for a seizure (my biggest seizures generally have auras including strong headaches, feeling cold, deja vu, and of course then the symptoms that my smaller seizures have too, ie. confusion, tiredness etc).

I had some seizures, then I fell asleep. I think my neck must have been positioned ever so slightly strangely (I have such a damn sensitive neck, it doesn’t take much at all to trigger my neck pain and this *always* leads to headaches). So when I woke up I already had a very painful headache 😦

I took two Codeine immediately, and Gog gave me a neck massage bless him which he is *really* good at, but for hours afterwards I couldn’t concentrate on much or enjoy anything because I had a terrible headache.

We discovered some months ago that what I have always counted as headaches are actually classified as migraines, and are much worse than what most people I know class as headaches – ie. for me headaches make me feel extremely sick, movement causes significant pain, lights intensifies the pain etc.

I took more pain pills – seriously fuck how many you are supposed to take, I am SO sick of living in pain!! – and it’s eased a little.

I’m a little annoyed because I had a lot of plans today (we just got a new puppy last night who is to be my assistance dog, so I had lots of stuff I wanted to do). I got some stuff done, including beginning clicker training with her and a walk in the dark, but I had to leave a lot of things for another day.

Anyway, photos because she is cute 😉

sasha6

day1sasha2

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Unwell in every way

Uuuuugh.

Alongside bipolar fun, I’ve been feeling crappy physically too recently.

I’ve had a lot of migraines and a lot of neck and back ache (which usually happens daily in a depressive episode but I haven’t been depressed recently!), and then today was the icing on the cake.

I’m sleeping more atm (12 hours up from 8-9 hours). At the beginning of this week I had a two day migraine, which left me in so much pain I couldn’t do anything.

Ever since that I’ve had ear ache in my left ear and just felt really tired. Then today I woke up with a really sore neck which leeched into a headache.

Since early morning I’ve had a really bad allergic reaction ALL DAY to something in the house…I should add I don’t really have any allergies, I’ve tested allergic to tree pollen but nothing else. We don’t have any trees in our house haha and nothing’s changed over the past few weeks, yet today my body is claiming I am allergic to everything in the house. Outside I’m better, little snuffly-sneezy but nothing like inside.

This seems to happen with me, every other month or so I have a day or two where allergies cripple me and I don’t know why.

So all day today I’ve been sneezing, big painful sneezes with a tickley throat, nose and itchy eyes. The sneezes result in a bloody nose and a very sore throat. 24/7 irritation is awful and I feel sorry for people who have allergies this bad daily!!

I feel absolutely exhausted. Totally drained. My head is all muggy like when you have a cold and I still have ear ache. I ended up sleeping until early afternoon so I’ve only been up 8 hours and I’m knackered and definitely ready for bed.

*sneeze*