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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 ๐Ÿ˜… 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!!

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Complaint & tattoos

PALS have said that they can’t see a referral to a neurologist on my file…which is very odd ๐Ÿ˜‘

The GP sent off the referral 2-3 months ago, so…?

 My partner phoned our GP surgery this morning to ask if there was a referral on the system, but they wouldn’t talk to him…which is just UGH, because when I filled in the registration forms at the surgery, I wrote at every suitable bit that he should be added on the system, I gave consent for him to talk on my behalf, AND I checked with the GP too!!

So now we have to go into the surgery today to ask about the referral, and I’ve written a note that says ” I [name] once again give consent for my partner and carer [name] to talk both on the phone, and to Doctors, on my behalf”. I even included my old and current name and signature, because I’m changing my name on the system today too. 

It’s my birthday in a week and I’m getting two tattoos for it woop woop!

I’m so insanely excited, I haven’t been able to get any new ink in years, because of seizures and what not. I’ve planned these two tiny tattoos so well too haha ๐Ÿ™‚

My appt is on Friday, the guy doing them is lovely and I had two of my others done with him. He doesn’t take bookings over the phone anymore as he takes a deposit due to idiots not turning up, so at first we thought we were gonna have to go elsewhere (bit too much to have to travel in to book them, then again for the tattoos). But my partner called him back to ask how long his waiting list was, and when he found out I was disabled he was so lovely and booked us in there and then, no deposit ๐Ÿ˜ƒ

I also got some new CBD oil to try, and it arrived today. I’m so desperate for relief atm, and the NHS isn’t taking me seriously, so I’m trying a different CBD company in case it helps more. CBD Brothers is supposed to be one of the best in the UK, so fingers crossed!

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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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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 –ย 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, ย 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 ๐Ÿ˜›

So with all this shit, for the first time ever,ย 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’ ๐Ÿ˜‰ 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,ย 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 ย 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 asย much as I can. ย 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 ๐Ÿ™‚

I didn’t ask for this life. I would love to work. But I can’t, and ย 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 ย 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?” ๐Ÿ˜›

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 โค

 

 

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Damn it world…

Life is throwing so much BS our way XD

Obnoxious GP, the most insane toothache that has spread to my whole jaw, my partner is ill, we had a really stressful day today with a damn electrician, my seizures have been terrible…and have I mentioned ow toothache?! ๐Ÿ˜€

The electrician came today, and all we’d been told is that it would be a ‘quick job’, He gets here and tells my partner it’s going to take SEVEN HOURS!! Holy shit.

So for the entire time I’m sat in a room upstairs out the way, because oddly enough I don’t want to have seizures in front of a stranger in my own damn house…but eventually the lighting in this room fucks with me (normally we’re only up there for an hour max) so I fall into a huge seizure cluster with an awful panic aura.

And after all that, one of the things he did was switch the light in our bathroom to a new fitting and bulb. We’d mentioned to our landlord if it was gonna be a bright light could we swap it somehow, to try prevent accidental seizures, and the landlord didn’t respond. We now have this behemoth of a light in there that is SO FUCKING BRIGHT.

I immediately hung a notice on the door, to try prevent people accidentally leaving the light on and me going upstairs and being immediately triggered *sigh*

After the electrician had finally gone I had a nap. I ย woke with some killer seizures (one lasting 3 minutes 25 – possibly my longest awake seizure to date?!) and in agony from toothache.

(me summed up in a photo today – blank, seizey, befuddled and in pain XD)

spoonz

AAAGH.

Thankfully stressful shizz is over now, and we have friends coming to stay this weekend, so that should be fun. I love being able to socialise and have friends stay now, for the past 6+ years I have been too mentally / physically unwell to manage it, so this is a fun achievement ๐Ÿ™‚

Please send us healing and happy thoughts, we both feel like zomibies XD

spoonz1

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Smashing stigma: shitty GP!

Oh we had a funny appt today ๐Ÿ˜€

I had blood tests done about a week ago, so I can finally be put on the waiting list to see a neurologist in regards to my seizures. If they are epileptic seizures I can then be put on medication to try stop them; if they’re non-epileptic seizures at least I know they’re not fucking with my brain, and we can try find ways to manage them.

The GP today was a HUGE bitch. So much so it was funny!

The appt started with her asking if I could take my goggles off, to which I replied I could, but the polarized lenses help prevent seizures. Strike one against me, she didn’t know what polarized lenses were and obviously hated feeling less superior.

I began telling her about the seizures (telling her about my auras, symptoms during and after). ย I told her about CBD oil, and that we’ve identified several seizure triggers (she didn’t ask what they were or give me time to tell her them).

I showed her a recording of a seizure, and she responded with “Well what’s supposed to be going on here, because it looks like you’re just watching telly”.

OMG hahaha, what an idiot!! When I’ve just told you all the symptoms, and wow well done for showing you have no knowledge of seizures as anything other than tonic clonics / grand mals!!

This was the video btw

She spent ten minutes (meaning the appt ran over) talking about my MH. She kept trying to belittle or insult me, using my MH as a weapon, and got increasingly angry when I refused to be belittled or ashamed.

Some of the questions include

  • When was I last on medication
  • When was I last seen for my mental health
  • Why aren’t I receiving help now
  • What is my mental health like now
  • Why do I think my MH is better now
  • (weirdly) Did I go to a public school
  • (after staring VERY pointedly at the scars on my arm) Do I have a history of self-harming? Why? For how long?

I was able to answer these questions extremely confidently, and this also annoyed her. Me and my partner joined as a team to explain the stress of appointments were extremely detrimental to my MH, and the fact they never helped anyway meant all they did was make me worse. I am doing better now, mentally, than I have in almost a decade.

She then asked me if I worked and when I last worked, and did not approve of the fact I hadn’t been able to work due to disability for so long.

After this she began talking about my seizures, but obviously referring to them as “episodes”. She began telling me that they may not be “true seizures”, and I interrupted to say we were very well aware about non-epileptic seizures, but obviously it’s worth seeing a neurologist because if I do have epilepsy, I can get treatment.

Everytime she spoke about epileptic and non-epileptic seizures, she referred to them as ‘true’ and ‘not true’ seizures. Well done for perpetuating the stigma against PNES!!

She said we might want to collect more video footage before the neurologist, and we said we had about a dozen videos spanning a year. She began to say we might want to record how many seizures I have a day, and we interrupted her to say we use a seizure tracking app to record how many I have, triggers, auras etc.

By the end of the appt she hated us, because I wouldn’t be embarrassed about my history of MH, and we were so knowledgeable about all my conditions. We (my partner and I) came out laughing, and feeling like a really solid team ๐Ÿ™‚

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Bleh bleh and bleh

My mania crashed…it seems forcing my body to sleep using Valium was enough to break it, and oddly enough depression hasn’t followed (yet…). As it is I’m just agitated and feel weird, but that could also be due to the high number of seizures I’ve been having.

Today has been awful. A lot of emotional stress, seizures, and episodic dyscontrol syndrome. Plus bad luck and the world just being a dick XD

The best thing that happened today was that the train driver asked my partner if it was “one adult and a child” (thus mistaking me for a teenage boy XD). It sounds weird, that being a positive, but for me it feels so amazing not to be recognised as ‘a girl’ anymore.

I’ve never identified properly with the idea of being female – I hate my boobs, I never felt like a girl, and I’ve been a ‘tomboy’ since I was about 8. But at the same time I didn’t feel male either…I didn’t want a penis, I didn’t want to change my gender. When I discovered the term genderqueer / non-binary, everything made sense!

For the first time I’ve been able to BE me ๐Ÿ™‚

I finally have the freedom to dress how I want without feeling guilty becauseย ooh but girls don’t dress like this, and changing my name to a unisex name means I feel so much more comfortable in my own skin.

So the fact that the ticket guy didn’t look at me and see GIRL really made my heart soar ๐Ÿ™‚

After a long day my body was knackered, so I lay in bed for half an hour fighting for sleep. When my body finally surrendered I slept for over 90 minutes, but had the worst wake up…over half an hour of back-to-back seizures, where I wasn’t able to move, speak, or open my eyes. I HATE seizure clusters as I’m waking, it’s awful.

Zombie me!

badday.jpg

Speaking of zombie me, my partner managed to catch footage of me during a complex / focal impaired seizure. These are the seizures where although my eyes are open, I am not conscious.

I move, fiddle and walk during these seizures, and afterwards I may be dazed, confused, shout nonsense or swear words, and act drunk. Watching myself move about like this, but look so ‘blank’ and lost, was hella weird.

And a weird photo of rust from our terrible day out.