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Broken

I had another broken day today πŸ™„

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 πŸ™„

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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Anyone w/ MRI experience?

So yesterday I got my appt through for my MRI at the nearer hospital, and it’s this Friday 😳

My bf(/carer) rang today to ask a few questions, eg about dimming lighting, turning lights off etc. He also said “during seizures Dally may twitch or move their hand/arm – what happens in that situation?”, and the nurse said if I have seizure and move, the MRI is ruined 😳😫

She then asked how likely it was I’d have a seizure, and it’s like um…very? πŸ˜…

I mean travel there will have weakened me & caused seizures, the lights at the hospital will have trigger me, and even on a ‘good’ day for seizures (w/ no big triggers) that sees me having 10-15 seizures…so yeah, add in some BIG triggers and I’m definitely gonna have a couple in 20-45 minutes of MRI-fun-time!!

So the nurse was like ‘hmm, that is problematic’, and we’re here thinking WHY WAS NOBODY TOLD THAT I HAVE SO MANY SEIZURES A DAY, & STAYING COMPLETELY STILL FOR SO LONG WOULD BE AN ISSUE?! Like is that not kind of important?!? πŸ˜‚

Seriously, if we didn’t know how useless the NHS is, we could have not phoned to let them know and just assumed it would be on my file!! Then we’d have got there and nothing would have been prepared and we’d be screwed!

The nurse asked my bf how reliable my auras are, and he said I get auras with about 70% of my seizures. So now the plan is if I have an aura during the MRI, I press the panic button. They’re also gonna possibly put extra padding around my head in the cage, to try keep it still if I seize without an aura 😫

My question to anyone with experience who has experience with an MRI – do you know if they can pause, during? Eg if I pushed the panic button, can they pause the MRI until I’m still again or would it be starting again?!

Good news though, they have said they can turn all the lights off in the MRI room, including in the machine itself. So at least that’s something πŸ˜…

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Oh ffs

Thanks to the inordinate amount of stress I’m dealing with atm, it was always gonna trigger a depressive episode.

But it still really, really, REALLY sucks that it’s happened.

This is the last thing I needed right now 😞

I’m tired of my life being so, so limited. 

I’m tired of having dozens of seizures every day and living with all the after effects. Of living in fear. Of being unable to do anything for myself. Of having so little support from the NHS. Of benefits HEAPING stress onto my already difficult life. Of family & friends being totally oblivious to how awful everything is. Of my parents lacking all caring. 

I’m sick of everything…

I’m already scared of how this depressive episode is gonna go.. I hope it’s ended before Christmas 😭

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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 –Β 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, Β 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 πŸ˜›

So with all this shit, for the first time ever,Β 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’ πŸ˜‰ 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,Β 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 Β 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 asΒ much as I can. Β 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 πŸ™‚

I didn’t ask for this life. I would love to work. But I can’t, and Β 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 Β 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?” πŸ˜›

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 ❀

 

 

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Bad bits and good bits

Today got off to a shit start, with my GP surgery being major dicks yet again!

My bf phoned up to ask if the surgery could legally do a blood test if I was having a seizure. Β As far as we knew I was on the waiting list for a home test, but we’d been waiting for months and thought with my new polarized goggles I could get in and out fairly easily…we just wouldn’t want to get there, me to have a seizure, and them to say “we can’t legally do it now, come back another day!”…and it’d NEVER be done!!

The receptionist was actually disgusting. She treated my bf like shit. She told him he was wasting their time asking this question, that “there’d be Dr’s there” if I did have a seizure, and – the best bit! – snapped “You’re not having a home visit, if that’s what you’re after!”

Firstly, that IS NOT what we were after, secondlyΒ according to the previous receptionist we spoke to we were already on that list!!!

Thanks for letting us know we weren’t at all XD

After receiving no answer, we hung up. We then phoned Epilepsy Action’s advice line, who were almost as unhelpful and out of date in their information…according to them seizures cannot be triggered by fluorescent lighting?!?

Quick google search showed me many others were also triggered by fluorescent / LED lighting, and this post on an epilepsy forum hit home as I share a lot of these triggers!

Anyway.

The benefit of this was that we discovered a new GP surgery in our town. It’s in a small house, so has normal lighting, and means I don’t have to deal with the shitty staff anymore…yay!

Today I went out for 3 hours, which was really fun! It resulted in a high number of seizures (21 simple partial, and 3 complex partial), but without my polarized goggles it would have been much more, and I wouldn’t have been able to do anywhere near as much πŸ™‚

Here’s me in a brightly lit shop!!

spoonie

And we even had a meal at a pub πŸ˜€

And an ice cream with a view for desert!!

Awesome day πŸ™‚

A few hours after we got back home, my brain crashed and I had to take a codeine for a migraine…but it was worth it!

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Sleep

I’m not sure I’ve ever slept so much in my life, even the times I’ve slept a stupid amount due to depression.

This time the sleep is caused by seizures – not only have we figured that lack of sleep is a surefire way to guarantee a day filled with seizures, but we’ve also discovered that napping when I feel even slightly tired is great for resetting my brain.

Yesterday I had a lot of seizures and ended up sleeping 4pm-6am, today I had a few absence seizures but otherwise was good, but still needed a 2hr nap around 3pm. No seizures since and my head isn’t even that spacey πŸ™‚

It’s so easy for mental health professionals, or family and friends, to say that the most important thing we can do is stick to a schedule – especially a sleep schedule!

But there are a lot of illnesses where, if we listen to our body, sleep can be extremely beneficial and we should sleep whenever we need to. Sleep’s wonderful for healing, it can help boost your mood, reset your brain, and often you feel more energised.

For five years I had every single professional tell me how important it was to stick to a sleep schedule, that I MUST NOT sleep more than 8 hours a night and I must NEVER EVER EVER nap in the day.

And I tried to live that way for years, and it was hell!

Now I listen to my body. I nap when it says I need to, if I wake from a nap and I’m still tired I’ll return to bed and sleep until my body is ready to wake…it’s been amazingly helpful. Nine times out of ten when I wake my head is clear, my mood is brighter, and I have absolutely no inklings of a seizure.

The way me and my partner summed it up today is: we’d rather I lost a few hours to a nap and woke feeling better, than fought through tiredness and had multiple seizures, losing a whole day and risking injury. It’s not rocket science.

Medical professionals have their place and sure, they can have useful advice to offer…but at the end of the day you know your body best, and if you’ve been struggling with an illness for years you’ll most likely know what works for you best. Back to those blanket statements again, huh?! πŸ˜€