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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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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.  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, secondly 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 🙂

Here’s me in a brightly lit shop!!

spoonie

And we even had a meal at a pub 😀

And an ice cream with a view for desert!!

Awesome day 🙂

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 🙂

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?! 😀

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Psychosis, dogs and meds

I don’t know how I’m doing at the moment.

I’m still much more stable than I was before Citalopram, and am probably still closer to stable then I have been in about four years.

But things aren’t as good as they were, and I’m struggling.

The fact I’m struggling makes me scared, because I’m terrified Citalopram will stop working again and I’ll be thrown back into a life of terror and extreme, constant mood swings.

I’ve had a few days where I’ve struggled very much with depression, and tearfulness, and hopelessness. It doesn’t seem to be a constant though, just a day or two, and the constant is a more ‘meh’ mood…irritable, exhausted, miserable, and pain.

My neck pain, headaches and migraines have been really bad for a week or so now 😦

I’ve been having more visual hallucinations than had become usual and my paranoia is back. My anxiety still isn’t really visible, but I’m scared with my psychosis kicking up a notch it’s gonna come flooding back.

I am still able to enjoy things though, and I can get out the house still. I couldn’t cope with going somewhere busy, such as a supermarket, but I can enjoy brief walks around the neighbourhood – I can even walk our little foster dog on my own!

Because of our foster dog we can’t leave the house for very long at the moment – we’re building it up very slowly, today we’ll be leaving her for twenty minutes!

Anyway, that means we can’t make it to the GP appt which was supposed to be within the next week…before my mood went weird I was very confident about going to this appt and actually planning what I wanted to say, but now I’m relieved to have a reason we can’t go and when I think of an appt my heart hammers.

My partner phoned the surgery last Friday to ask for a phone appt, as my GP said we could do things that way. He’d talk to my partner about how I was doing and type up a repeat prescription, and the physical appt can be left another few weeks.

The surgery didn’t have any phone appts available though, there’s a week wait :/

I think we should have enough meds to last.

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Money struggles

Gog here. If you’ve been reading Anon’s posts you will know we have been struggling a lot at the moment, with various things.

Anon’s mood has been absolutely crippling – not just depression, oh no that would be far too easy wouldn’t it, but suicidal depression alongside hateful thoughts towards herself the like of which I’ve never seen, and anxiety that means she can’t breathe when it hits her hard.

That’s been fun.

Alongside all that the rescue puppy we recently brought home has seriously injured her leg, meaning she’s been prescribed 6 weeks crate rest. Because of the lack of exercise she is being an absolute brat (hard things to deal with like barking, whining, an increase in biting which we’d almost gotten rid of etc) and she’s recently decided she doesn’t like her crate, and so whenever we shut the door she is barking and screaming constantly.

This is after we’ve put weeks into crate training and she has always loved her crate, so it’s very hard for us to deal with. I know it doesn’t sound much, but imagine being with a puppy you can’t leave because it panics her, and who barks and tries to run and bite you 24/7 because she has no release for her energy! It’s draining.

Finally we’ve had some serious money issues.

We’ve been struggling with money since the start of this year, after a manic episode brought us down to so little money we had to use a food bank…slowly our money was increasing, even after we unexpectedly brought a puppy home and she had injuries and vaccinations to deal with.

For the past 1.5 months we have had next to no money, and we haven’t known why. It has been incredibly hard to deal with as we had scary vet bills for our dog’s leg, rent bounced last month but we managed to pay it quickly, and we couldn’t afford food yesterday.

I’ve been wanting to get in touch with Anon’s bank to see if we are victims of fraud (this happened with my account a few years ago) but we either have to travel to a branch, which Anon can’t manage due to crowds, public transport, and she’d have to answer security questions – or she has to speak on the phone, something she also can’t do.

Anyway yesterday I phoned the bank and explained everything, and the person we spoke with was actually really helpful. She said she had one question to ask Anon, and it could be done on speaker-phone, so we managed that.

She then went through every transaction from May until now, and I said I was really confused because we didn’t have the money we should, but all the money out was us. Then she realised we hadn’t been getting a regular income payment, it hadn’t come in for the last 6 weeks.

It turns out Employment and Support Allowance had stopped paying us, for absolutely no reason, so for the last 6 weeks we had been living on £220 a month – no wonder we had been struggling with money. I’d really have appreciated it if they had contacted us to let us know they weren’t paying us!

I phoned them up, and the gentleman I spoke to on the phone was absolutely amazing – I wish I had got his name to tell someone he was so kind to us. He said the problem was on their end, and he was so sorry we had had to go through this.

He had to speak to Anon twice, but only in that he had to read things to her and she had to say she agreed – before each time he asked her if she was okay.

Anyway, they are back-paying us £900 which should be here Friday-Monday. We will be able to buy food 🙂

Then today I had to phone up Personal Independence Payment, as we got a stupid letter through the post saying that we must send them evidence about how ill Anon is. Which is ridiculous, as we don’t have anyone who would send evidence, because we have been waiting these past seven months for Anon to see a psychiatrist!!

You can see my issues with PIP here.

I phoned the PIP number, and the person I spoke with was initially very rude and unhelpful – refusing to speak to me and demanding to speak to Anon. Wow yeah, if you think you can talk to her when she is psychotic, suicidal and suffering from a panic attack, go ahead you moron…

Of course I didn’t say that and I’d never put Anon in that position. I patiently explained again and again she couldn’t talk on the phone, I was her registered carer etc.

Finally she was willing to speak with me. I explained there wasn’t any evidence we could send, but if they could access medical records they could see our recent dealings with the NHS – countless appointments with people who prescribed emergency medication and contacted Crisis Team, and obviously our recent trip to A&E because Anon was suicidal, and how the police were called afterwards. I said that should be evidence enough to support everything we had put on the form.

That was pretty much it. I just know they won’t count that as evidence, because it’s not the same as being able to write and talk with a person who has seen Anon several times…but it’s all I can give them, and if anything it should show how bad things are better than talking to a Doctor.

I’m scared that either they are going to give us the same rate again, or more so that they will want to do a face-to-face meeting with Anon (the last one they did, years ago, was terrible.)

How can I explain to them that we can’t even do bloody medical appointments with Anon because she has the most terrifying panic attacks whenever I so much as mention them, so a PIP appointment is a definite no no? They won’t understand that, they won’t even try…

And that’s the end of my money whinging. I sure hope things pick up soon!

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Panic and Valium

The past few days I’ve been taking Valium as needed.

I have Valium left over from when I was really psychotic, and all the crap GP we saw wanted to do was dope me out of my eyeballs…the first few days I took the dose he prescribed, and I was so zombied out I couldn’t move or talk.

We lowered the dose ourselves, so we have a lot left over.

I’ve been feeling so terrified these past few days that I’ve been taking 2.5mg of Valium whenever I need to, and it’s been immensely helpful. It winds the panic down to anxiety, which I can cope with.

This morning I’m so scared, for no apparent reason. I’m trembling, I feel sick, my heart is racing, and my palms are sweating. I feel on the verge of a panic attack.

I think what’s triggered this immense terror is that we’ve said we’re going to call the charity Bipolar UK today, and even though that shouldn’t be scary at all…apparently it is.

My mood is still extremely low. My psychosis has been worse than usual for a week or so now, so I guess the increase in anxiety could be linked to that too. I feel drained and scrambled.

I just raged at my partner because he talked about him ‘trying to keep me safe’, and I asked him if he realised how fucking cruel he was being. Yes, he’s trying to keep me physically safe, but he’s not lifting a fucking finger to try and help me mentally.

It’s TORTURE being unable to end this misery. I told him he’s like a zoo ‘rescuing’ an endangered animal, then letting it live for years in a tiny concrete enclosure. Sure it’s physically safe, but mentally it would have been better off dead.

It’s all well and good keeping me safe, but I also need help to fix my mental state. I CAN’T LIVE LIKE THIS.

Time to take half a Valium…

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Panicking

Panicking, don’t know why. I think because I’ve talked a lot about MH appts today and I really do think after all the trauma of those last appts, I’m damaged. I get so anxious.

Even thinking about those last appts has me panicked, trembling and nauseous. When my partner tries to talk about going to an appt in the future, I have a panic attack.

I’m sat here with my heart racing, head hurting; can’t think or sit still or concentrate. Don’t know how I’m supposed to deal with this.

I’ve been chatting to my parents and my partner, playing with my pets, for 45 minutes now and I’m freaking out worse than ever.

My partner gave me half a Valium (we still have some left over from the disastrous GP appt months ago), I really hope it will help calm me.

My mood is so extremely low. Tired of this struggle.