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Too much, too much!!

We’ve had a few busy days recently, beginning with my parents visiting at the weekend and journeying to a zoo.

The busyness caught up with me, and for the last few days I’ve just felt so physically exhausted. One day I didn’t leave bed other than to go to the loo. I have been SO TIRED.

For years I would’ve fought against this, called myself lazy, and been filled with self-hatred. But I’ve learned that when you’re chronically ill / disabled, you HAVE to listen to your body. Self care is not selfish! If you need a day of rest, you need a day of rest. If you need an entire day in bed recovering, do it!!

Today I woke up feeling energised, but I pushed myself too much. I ended up having to come home from a day out early, I had a seizure and fell (and have a cracking bruise on my head now), and we had to cancel plans with family. I rushed back into activity too soon, but I’ll learn from this and take it slower next time.

Point of this post? I dunno. Listen to your body, fight the stigma of others thinking you’re lazy, and do what YOU need to do.

ouch

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Nervous – my first BIG day in years!

Today my parents are up for a visit to belatedly celebrate my dad’s birthday, and we have a big day out planned.

We’re going to a zoo. Not just our teeny-but-lovely local zoo that’s a 15 minute drive away, but a BIG zoo a 50 minute drive away. That’s a huge journey for me (travel being my biggest trigger) and the zoo will most likely be packed with visitors, as it’s free admission until the end of this month.

After that, we’re hoping I’ll be well enough to look around a few shops and handle a meal out at a pub.

This is the sort of day out I haven’t been able to do in years, and so obviously I am nervous. I’m also aware that MANY people will stare at the zoo, due to my goggles. But I need them, so fuck ’em ๐Ÿ˜‰

With my wide-brimmed hat and my polarized goggles, I’m hoping we can enjoy a really good day out with not too many seizures. Nervous but excited!

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This bad day got busted!

Today started off with my depressive episode feeling the heaviest yet, but the day got completely overturned with a succession of awesome things happening ๐Ÿ˜€

This normally never happens, we have the worst luck haha, so yay!

First thing…Halifax got in touch about my complaint

I complained about the way they treated me in terms of my title, that they don’t have anything outside of Ms, Mrs or Mr on their system, and also that the staff member had no sympathy for me having seizures / brain fog.

Well, they gave me a monetary compensation and far FAR cooler – THEY ARE ADDING THE TITLE MX TO ALL THEIR BANKS, NATIONWIDE!!! ๐Ÿ˜€

They said it might take some time, but they are actually doing it! And I got the first Mx card from a Halifax ever, which my mum pointed out haha, and how cool is that?!

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Woohoo! Thank you Halifax for being so good ๐Ÿ™‚

On top of that, when I text my mum the outcome she was amazingly wonderfully supportive and impressed. We then had a really, really awesome conversation about the name change, me being non-binary, how I felt etc etc.

My parents haven’t seemed particularly supportive throughout this, so this came out of left field and made me so hugely happy!! She said she’s gonna start trying to call me Dally too haha, which will be weird but awesome XD

Happy me’s from today!

To celebrate monies, we went out and explored somewhere we’d never been before.

I’m trying to push myself for further and further train journeys now my polarized ski goggles are helping so much with seizures. This was my longest journey yet at 35 minutes. Great day, and I got to go around four different pet shops – something I haven’t been able to do in YEARS!!

We found a fab new herp shop, and guess what? WE RESERVED A ROYAL PYTHON!

I’ve wanted a Royal for almost a decade haha, but have always opted for other snakes when we’ve been looking for one. The pet shop guy was showing us loads of herps though, and this Royal was for sale and it was so tame and he said it was a great feeder…and it just happened ๐Ÿ˜€

I’m collecting it this weekend when my parents come visit us, so we have a few days to sort the viv out. If you don’t like snakes, look away now and scroll to the red word SAFE!

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The snake in the middle is mine! โค

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SAFE!

We also got a bite to eat at a Costa, and I found some new walking boots in a charity shop. Hells yea!

 

I only had four seizures whilst out, and we were out about 3.5/4 hours too ๐Ÿ˜€

Also check out this pic from the train on the way there…LOOK HOW NORMAL I LOOK!! I couldn’t ride trains for so long, and there I am just chilling reading a book!!

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Train back wasn’t quite as fun, as there were some obnoxious teenage girls sat opposite blatantly laughing at my goggles, but for a depressive episode I dealt with it really well, so I guess I can be chuffed with that ๐Ÿ˜›

Hope y’all have had as good a day as I have!

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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!

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A scary day turned good

I woke up this morning and realised immediately something was not right.

I figured I was about to have a seizure (I have a lot of seizures just before and after waking), but when I got out of bed I didn’t have the balance to walk. I had to crawl to and up the stairs to go the loo, because I was literally tipping sideways when I tried to walk.

I had a few seizures but was still just totally spaced, out of it, and scared. I was having lots of seizure warnings (auras) and some seizures, but I wasn’t feeling better at all between them. I didn’t know if I should be heading to hospital or what.

I wondered if maybe I was about to have a really bad migraine, as in the past I’ve had similar auras to seizures for that, and the left side of my face felt numb. That also happened during a migraine aura in my teens. I took some extra strong pain pills just in case.

After an hour and a half of this scary ‘offness’, I finally began coming out of it. My brain began to clear, and although I was still spacey, it was different.

My final seizure was a very odd seizure where I wasn’t responding and was twitching, talking repeatedly about tadpoles – tadpoles?!?

My partner said I was lying staring blankly, alternating between saying “TADPOLES – TADPOLES – TADPOLES” and saying another phrase involving tadpoles.

I also had one of the seizures where I rubbed my eyes ferociously during – idk what that’s about. Afterwards I had huge red rings around my eyes!!

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And hey, who knew it – some disabilities are INVISIBLE!! This is *such* an important message to me, because so many chronically ill people with hidden disabilities constantly hear “but you don’t look sick!”

This could be from friends, family, or people who are being rude (intentionally or not) when you’re out in the world. Maybe you asked for a key to the disabled toilet at a library, maybe you have an assistance dog, whatever – to all the non-spoonies out there, you should never EVERย EVER say to someone “you don’t look sick”. Looking sick has shit to do with it, if you’re sick, you’re sick.

For the last 90 minutes before the photo above, I was having seizures and scared I would end up in hospital. Looking at this photo, you wouldn’t know that.

‘Looking sick’ has no meaning on how much a disability affects your life.

(</rant>)

Once I’d recovered from the morning, we *had* to get out to a bank.

My partner’s bank card is broken (we have money in the account and can see our account on a machine, but for some reason the stupid bank aren’t letting us withdraw ANY money?!), and because my partner hasn’t had a phone for over a month due to his dad not sorting it, we had no way to ring the bank…my phone had no credit, and we couldn’t get money to top up with!!

So today we had to get to a bank before it shut at 4pm, to get money out of a savings account so we could live until his account is sorted.

The bus journey’s weren’t the hell I was imagining, thankfully, and neither was the trip out. I actually only had one or two seizures, and we were able to go in a few shops, eat a meal, etc ๐Ÿ™‚

He was hiding the bubbles in his drink, because I have a tendency to accidentally fixate on them and trigger seizures!

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Afterwards we found this crazy ice cream booth in the market – flavours included salted liquorice, cheeky monkey, blue banana, and turkish delight! My partner got a turkish delight flavoured ice cream and now says it’s his favourite flavour!!

When we got back I was even able to clean parts of the house and join my partner walking two of our dogs.

So all in all today has been good…it just had a really awful start ๐Ÿ˜›

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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 ๐Ÿ˜‰ ), 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.ย 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 dropsย we’re doingย 14, tomorrow will be 16 drops and the day after 18. We’ll see how I’m doing then.

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My life with seizures

Very bad day so not able to type much. Will copy this summary I typed elsewhere instead:

Welcome to my life with a seizure disorder.

Dozens of seizures a day and being able to do nothing to stop them; relying on your partner to stop you auto-walking, falling, or being hit by cars when having a seizure; not remembering ANY of your day (not even things you did five minutes ago); and looking like a prat in front of complete strangers, so choosing to hide away inside.

Just tried to say goodbye to [my partner and our friend], and instead my mouth said “no fucking”…which was at least humorous, but y’know’ not exactly great XD