2

Still waiting

Not much to report, things are the same.

I still don’t have my MRI results. It was almost 4 weeks ago now 🙄

When we phoned PIP on the 6th week (originally we were told we’d have an updated decision in 3), the person we spoke to said “what I’d advise you do is call again at the end of March if you haven’t heard anything”…😱😱😱 That would be twelve weeks!!!! 😡 So I think we’re going to phone them weekly just to try to annoy them into acting faster 🙄

And I haven’t heard about an appt for my EEG yet, despite the two referrals my neurologist sent 🙄

So.

I continue to have way too many seizures everyday, alongside battling chronic pain and bipolar disorder. I’ve been hiding inside, either not going out at all, or going out for 15-30 minute walks to enjoy the snow🙂

Because I haven’t really been going out, my seizures have been sitting at an average of 15 a day, but a few days back I had my lowest seizure day in about 10 months: 8 seizures in an entire day 😃

And that’s pretty much where we’re at.

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5

Everything is an uphill battle

I’m feeling totally overwhelmed at the moment, and depression is engulfing me again.

Yesterday marked 3 weeks since our PIP assessment, which we were led to believe that, because it was adding a new health condition and not a new claim, we would get the results within 3 weeks.

We got a letter from PIP, and opened it feeling sick with nerves…and it was this!!

Like…no!! Don’t say ‘we have your information’ when you’re supposed to be saying ‘we have your result’!!!

So my partner went to call the number to ask how long, and the automated script whilst you’re on hold has been updated to say you should wait at least FOUR WEEKS for your result now…like for fuck sake!! This is do taxing on my mental health, I just want it over with 😩

One of the most disgusting thing about benefits is how hard they make the process for disabled people. The people who need the most help!

This entire process has been a nightmare, and alongside it there’s been the Universal Credit process which has been going on for 10 months, & is just as bad!! I just want to know if we’re going to get the money we deserve. I want to know we’ll get money so we can not just ‘scrape by’, but LIVE. So we don’t have to worry. I want to know we won’t have to rely on a foodbank again, that we won’t lose our house, that I can get my disabled bus pass!

I’ve jumped through every hoop & it’s been so mentally AND physically taxing…so the fact we have to wait longer than they first said brought me to tears. UC has no end in sight, but PIP should’ve been over.

Anyway. That was yesterday.

Today everything feels like a very intense uphill battle. I’m feeling completely overwhelmed, even though there are no ‘scary’ plans today, no need to feel that way. I want to cry thinking that the instant I leave the house I’ll start having numerous seizures…what is my life?! What is the point?? Why am I continuing to live when my life is just being in a gloomy house?

Finley, our puppy, comes home at the end of this month. I need him so badly. Just gotta hold on.

Yesterday we went for a short walk around the forest at the end of our road. I didn’t wear my goggles, because if I do I miss out on the beauty of nature, I miss out on partaking in one of my favourite hobbies, photography!

I should be wearing my goggles anytime I’m outdoors, really. But I hate them so much that I really only wear them when I’m around lights (shops, restaurants, hospitals, buses, trains, town etc) or if I’m having a really bad day.

When I’m out in nature, I want to *feel* it, experience it…and you can’t do that wearing goggles that turn the world incredibly dark, steam up, and remove the beauty 😅 Seriously, when I wear my goggles the world is muted to one dark-blue colour, there is no beauty.

If they stopped all my seizures outdoors I’d probably wear them all the time, because then it would be worth it. But if I’m gonna have seizures anyway I’d rather enjoy the beauty, thanks!

I’m so tired of not being able to do anything, not being able to go anywhere. Of having dozens of seizures everyday, just from being indoors and going on ONE WALK a day! I miss going places and doing things, not just walks…I miss days out, shops, visiting exciting places. I don’t remember the last time I was in a shop, even a small one, it was weeks ago.

I miss living.

2

A good day

I actually had a good day today, although I’m paying for meeting up with relatives for 4 hours – very exhausted and seizey now!

Once we got home my bf called the company conducting my assessment for PIP, and the woman on the phone was just lovely and so helpful.

Firstly we asked if there was a way to move my assessment from the city 50 minutes away (where they gave us the appt) to the city 15 minutes away. Being out the house for longer triggers an increase in seizures; being on transport for any amount of time triggers an increase in seizures…so I couldn’t do that.

Anyway, they moved my assessment across really easily…which begs the question of why they were sending us further away in the first place?!

Next we had to ask about allowances in the assessment room. This would either be a room with no windows and dimmed lighting or a room with covered windows and dimmed lighting – failing that, a desk I can sit under andhide hide from the light 😂

The woman put that on file and their appointments team should be calling us in the next few days to talk about what they can do.

Finally we needed to ask about recording the assessment. The fact I have seizures means my memory is hugely affected, and I can’t remember things like I used to. An assessment is stressful, and not remembering what was said would be terrifying for me…however PIP sent us a booklet of rules, and one was that if you want to record the assessment you have to let them know in advance and use a recording device that provides two hard copies (CD or cassette) BY THE END OF THE ASSESSMENT.

So. We don’t have anything that could do this, and we can’t afford to buy a recording device. The woman’s going to ask if we can use a phone to record, and if not then my bf will be writing everything said by hand…meaning the assessment will last twice as long, but what can we do? 😅

Exhausted. Yawn.

1

A tough day

Stress and seizure rage today 😩

Phoned PIP today to tell them about my seizures (we were waiting until a medical professional had acknowledged they were seizures, but that’s obviously going to take too long)…figured if they won’t acknowledge them as seizures because I’m not diagnosed, they’ll at least see how damaging they are to my quality of life. I was already only one point off the enhanced rate of PIP, so I guess with seizures they’ll have to qualify me.

My partner also called a company about a disabled bus pass. It seems I’ll qualify new, but the easiest way is to wait for PIP’s reassessment, and then use that as evidence. Bloody hell.

Anyway. I got some nice photos (of me and a burnt down house) once everything had stopped being so screwed by seizures.

Sad confused seizey me trying to take a video

Collected re-grouped me, that’s better!

I went off in a rage for an hour. Don’t remember much, cut my finger somehow, then phoned my partner and we talked, eventually meeting up. I hate how abusive I am around seizures with seizure rage, I fucking hate myself for it 😫

Took some nice photography when we were back together though.

0

Today, we coped

We had a rough day today.

Seizure rage / shitty mood in the morning. Then on a dog walk our smallest pup was badly injured when another much larger dog ran into her. She hurt her front leg badly and it was very scary.

This was obviously incredibly stressful; she was in a lot of pain, she’s the sweetest little girl so it was awful to see, and thanks to benefits stopping for no reason and without telling us, we have no money.

Our benefit was suspended for a mistake that a GP wrote in a letter, we weren’t told they had been suspended and so had already missed a month’s money, and now they’re making us jump through a hundred hoops before they restart it. And, because that benefit was suspended, another has had to stop until the first has resumed.

We have literally no money.

As soon as we realised we had virtually no income we bought some dog food in so the pups would be okay, and have been on zero spends. Our amazing friend surprised us with half a dozen bags of food recently, it was amazing and we were so grateful, so we won’t have to use a food bank. But an emergency vet bill is not what we needed right now.

Thankfully my partner met up with his grandparents last week and we were given some belated Christmas money. We have £200 thanks to my partner’s family, and can scrape together £100 from our bank accounts if we abandon rent / emergency money.

We phoned the vet at the time of the accident and made an appt for this evening, but they only do ‘non-emergency’ (ie. if the dog’s not going to die) x-rays in the morning. So now we have the exam AND probable x-ray tomorrow morning.

In the meantime our little pup has been having a ton of cuddles. She has done SO WELL. She bounced back super quick, she hasn’t seemed in pain after the first hour (although can’t bear any weight on the leg), and it’s her wrist / around the dew claw that’s injured and not her leg, thank god.

With all this massive amount of stress, I’ve amazingly not been lost to a day of seizures or fallen on a suicide attempt or being overwhelmed with panic. I’m wondering if this is the CBD oil helping my MH symptoms?

I’ve been scared and anxious and sad, yes, but I think given the circumstances that is totally normal.

I’m actually proud of myself. Which feels weird haha. Usually a routine vet appt freaks me out so…yeah, I’m proud. And so relieved that my little one is doing as well as can be expected.

Now just please let the appt go okay, because I love my baby so much…

0

Screwed up kids *trigger warning*

I was one of those kids that was obviously a little messed up.

I had my first suicide attempt at 10 years old; I tried to flush my head down a toilet. A teacher found me, and it was never mentioned again. I began self harming around the same time, and sustained injuries including a dislocated thumb whilst I was still at primary school and broken wrist at 13. I was totally unaware of the idea of self harm, cutting as a way to hurt etc.

I never had any confidence. I always thought I was a disappointment, I was excruciatingly shy, I hated my weight and began restricting my calorie intake whilst still at primary school.

My Grandad fought lung cancer for several years, and for a child I was too involved in his care. I was 11-13 years old, the responsibility was huge!

Around that time, I began restricting what I ate in earnest. I would go all day eating nothing, then binge mid-afternoon before anybody returned to the house. By sixteen I was eating under 200 calories Mon-Thurs, binging on Thursday, restricting below 500 up until Sunday, and then on Monday the cycle would repeat.

Compulsive exercising snuck up on me too; what started as ‘just walking home from school’ (a 45-60 minute walk) progressed to hours of exercise every day. At my worst I was eating less than 500 calories a day and exercising for a minimum of four hours.

I lost close to 3 stone over a period of about 5 months, and I was slender to start with. Despite the obvious transformation and my clear struggle with food, my parents seemed oblivious, with my mum even feeding into my disordered thinking by complimenting me on my weight loss.

At fifteen my parents accidentally saw some self harm on my arm. I was lying on a bed and my pyjama sleeve had ridden up far enough to expose cuts. Instead of support, I was ridiculed and called ’emo’. That was one of the lowest points in my life.

At school teachers knew I was battling demons, but nobody did anything.

Throughout my teenage years I had a dozen suicide attempts, wasted years starving my body, and was filled wityh despair, darkness, lonliness and self hatred. Shying away from family events, plans with friends, and instead holing myself up in my room thinking about how much I despised myself, how I’d be better off dead, and exercising crazily.

I received zero help until I was 19, when my boyfriend said I needed to go to the Dr’s as I had been suicidally depressed for several months. Despite my first suicide attempt being at 10 years old, I wasn’t pushed for help until 19.

When you’ve been dealing with mental illness so long, and since you were so young, you don’t realise a) how sick you are, or b) how ‘wrong’ your emtotions and thoughts are.

I didn’t realise that the depth of my despair wasn’t normal. I didn’t know most my peers didn’t feel this way.

The NHS is a shambles with MH support, and I basically never received adequate care. My bf has done more for my mental health than the NHS ever did. I still have extremely poor body image. I still have periods of battling suicidal thoughts, I have unchecked bipolar, I’m often overwhelmed with anxiety…and now I have psychosis and seizures thrown into the mix too!

But mentally, I am stronger. I feel better in myself.

Who knows if having support when younger would have helped me now -would I have been a fully functioning member of society? Idk. What I can tell you is that I would have loved someone to help me back then.

I would have loved someone to sit me down and say “look, you’re not okay. I know you need help and I’m going to make sure you get the help you deserve.”

I would have loved anything to make me feel less alone and scared.

It’s a crying shame that CAMHS (the children & adolescent MH services) are a sack of shit in the UK. We are doing a huge disservice to young people by brushing them aside when they are asking, crying, begging for help. How many adults are still battling such fierce demons because as children they were ignored?

It’s not enough to say that every childhood has rough bits, that every teenager goes through periods of being ‘sad’…that’s not okay.

  • Kids can have mental illnesses, kids can need support.
  • Teenagers can be lost in the darkness and need someone to guide them back to light.
  • Eating disorders are hell, no matter what your weight. Not everybody battling a severe ED is underweight!!

Everybody deserves to be listened to, and to be supported

That is a *huge* thing lacking in the NHS. They don’t want to listen, they want to wash their hands of you and move you along as quickly as possibly. You won’t feel heard, you won’t feel validated.

Hell, I had a GP appt last week to talk about my seizures. The GP let me say two sentences about them, said they didn’t sound like ‘typical’ seizures as I wasn’t convulsing on the floor (oh I’m sorry, have you never heard of simple / complex partial seizures?!) and told me I’d have to wait 9+ months to be seen by someone with knowledge about seizures…she blamed my MH entirely, and didn’t want anything to do with that.

We shouldn’t be ignoring these ‘broken’ kids…we should be reaching out to them and helping to glue them back together.

When I was a teenager, nobody knew where to turn for help – not me or my friends. They were scared for me at various points, and desperately wanted an adult to help out – when I fainted due to not eating enough, when they saw my arm and it was laced with dozens and dozens of cuts, when I’d taken an over dose…they were frantic to help, but had no idea how. Who could they tell?

Not a teacher, who wasn’t approachable and would just tell my parents without trying to help me at all. Not my parents, who (at the time) reacted to everything with either ridicule or anger…where do you go? Who do you tell? What do you know at 13 / 14 / 15 years old?

There needs to be more understanding. More information. Mental health needs to be taken seriously. There needs to be adequate support and treatment for those struggling.

The world keeps talking about how much money is being poured into the NHS for mental health. Celebrities are all coming out saying they have depression, anxiety, bipolar, and there’s no need to hide it…but there is.

There is SO MUCH stigma in the world. People are disgusted by mental illnesses. People are scared by anything other than anxiety or depression. People think you are faking it. The NHS doesn’t want to help those suffering from mental illness; benefits won’t believe you need assistance if you look physically well.

We need a huge overhaul here.

0

What to call but ‘ugh’?

I’m at the bottom, I’ve sunk so deep I’m surrounded by despair.

Yesterday I had my first medical appt in a year and it was awful and just reminded me completely of why I stopped going. The Dr was rude, dismissive and had no appreciation for how scared I was, either about the appt or the fact I’ve started having seizures with no history of seizures. I broke down in the appt and cried uncontrollably.

Benefits have stopped two of them because they ‘thought’ we were receiving universal credit (we weren’t, we never have) and now are refusing to start. We are now receiving only 80% of our usual income.

My seizures are off the chart, I feel like shit all the time, I’m constantly close to tears.

I’m totally done with my partner and everything he does makes me angry. Twice he’s left some fucking quail eggs in an incubator in a stupid place and twice it’s been knocked off and smashed and I am just so done.

I’ve not been happy with our relationship in so long because he let some things get too far to be repairable, but we keep trying and trying and I don’t want to anymore.

The ‘kill yourself’ voice is whispering away and I’m just sat here with no energy for anything.

Funnily enough before yesterday we’d been doing pretty good. Things change easily, all it takes is one bad thing to happen and if I don’t have the stamina to resist those suicidal whispers it can happen. And that’s what nobody understands. Maybe it’s because I’ve felt like this so many times before, so now when I feel like I’m drowning I have less fight, less energy to kick up to the surface.

It’s like when people say “it’ll get better, look for the nice weather after the storm” – and I’m there thinking ‘sure, but then another even worse storm follows that…’

Bipolar is an illness that takes you round in circles, with no end in sight. Telling me “it’ll get better” doesn’t help, because there’s always another storm coming…

I am not in any danger at all. I have no strong urges or plans, they’re just whispers. These are just feelings.