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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 – 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,  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 😛

So with all this shit, for the first time ever, 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’ 😉 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, 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  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 as much as I can.  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 🙂

I didn’t ask for this life. I would love to work. But I can’t, and  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  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?” 😛

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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Hobbies

Epilepsy stole many hobbies from me.

I can’t hike as much as I used to (and I certainly can’t go out alone, as I have seizures on most walks), I can’t play video games, enjoy handheld consoles, read, write, enjoy photography, or watch TV. Those were basically all the hobbies I have ever enjoyed.

So I had to branch out.

I discovered needle felting, which I enjoy, although if I have a simple partial seizure and automatically carry on with what I was doing, the fast-stabby needle can be somewhat dangerous 😛

More recently I tried hand stamping.

This isn’t really that good a hobby for me, as I get hugely frustrated when I make a mistake and have little patience. With needle felting, mistakes can be easily gone over or redone. With hand stamping the product is normally ruined.

I’ve definitely improved from when I first started, but the progress hasn’t quite been enough yet!

The samples that came with the kit are really soft, which means they’re super easy to stamp. I actually got pretty good with them, aside from goofing which way some letters sat 😉

Since then I bought some brass tags in, which you have to hit a lot harder. This causes the letters to jump about a lot more. I’ve done about ten brass tags, and this is the best I have so far.

I was really pissed with the jumping letters on the top two, because I used the single strike method, where you hit the stamp once…so how it jumped enough to imprint the letters twice, far apart, beats me!

Does anyone have any spoonie-friendly hobbies, that don’t involve light? I’m always on the lookout for more 🙂

So far I’ve tried:
– soap carving
– needle felting
– hand stamping
– (and I will be trying) paper folding!

I prefer hobbies that produce things that can be used for something, even if it’s just given as a gift.