Louise: Finding humour in the dark
In that split second I thought, ‘What the fuck are you doing?’
My physical health has deteriorated quite suddenly since I last saw you. I was already diagnosed with ME and Fibromyalgia back in March/April. I got a letter through asking me to go to a genetic clinic for a tests for a condition called Elhers- Danlos Syndrome (EDS), it’s where you have too much collagen in the system and everything is too loose. Because of that you tend to dislocate joints quite easily, it’s called subluxation and it causes pain, fatigue – all the things that I was suffering with anyway [laughs]. Looking back, it would explain a lot of my health problems. My psychiatrist said to me last week, ‘No one could be that unlucky’; all of these things must be linked somehow. Pretty much since that has all started being investigated, my body just gave up. I am in pain all the time and it hurts, all the time, every joint. Even brushing my hair, my scalp hurts. My nerve endings are constantly firing so even the acupuncture, which I’d been having for ages, is all of a sudden extremely painful to have all the needles put in.
I was walking from the kitchen to here and my little toe got separated from my foot as I walked. I popped my toe back in but we went to the hospital as Dave was worried and they said ‘Yeah, you’ve fractured it.’ I popped it out last Friday and again on Saturday. I dislocated my shoulder last Saturday and I’ve got both my knees strapped up because I keep popping my knees out. If I walk anything more than 200 yards, my knees pop out.
I can’t really enjoy life at the moment. That’s why I made the suicide attempt. Someone said to me recently that when you hit rock bottom then the only way is up. It kind of did ring true, but when there is absolutely no light at the end of the tunnel, when you can’t see any positive ending to it all… the fact that my health is just deteriorating month on month and it’s happening so fast now. I don’t… I sat here and I thought ‘What’s the point?’ I’m not getting any better. I’ve done everything in my power – I’ve changed my diet, I started exercising, started going to the gym twice a week. It would put me out for two days, I’d be absolutely exhausted but I thought ‘No, keep going, strengthen the muscles to try to stop them from popping out.’ It wasn’t working and I thought, ‘I have no quality of life at all, none.’ If it wasn’t my mental health letting me down then it was my physical health and there was no point in carrying on.
Since then, I got an emergency appointment with my psychologist and my psychiatrist. The psychologist is the same but the psychiatrists are on rotation so you see a different one every time, which I find quite frustrating. I’m doing at the moment what I’ve done in the past, which is I’m coming across as quite sane and lucid but it’s because I have gone in on myself. I’ve literally pushed every emotion so deep inside that all that’s left is this shell that can speak. So I can talk about it without it upsetting me or annoying me. Yeah, I’ve just pushed it away, put my head in the sand. It’s the only way I could cope. I couldn’t deal with the feelings, it was too, too much. Too much despair.
They have doubled the dose of my meds. I think that I need to be numbed while my brain heals, because I tried it on my own. I refused all the medication before and it didn’t work. I wasn’t getting better with will power [laughs]. I’ve been on 100mg Sertraline for five, six years but it didn’t work… Well, it was working but then my physical health started to fail me. You know, I’ve already been here – I’ve already done the tired wheelchair. I fought so hard to get out of that fucking wheelchair! And I thought I’d beaten it, it’s like my body went, ‘Well you’ve got over that, I’ll just have to give you something else. I’m gonna fuck you over royally and give you pain all the time.’
Every now and then I have a lucid moment. While I was cutting my wrist, I just looked out the window and saw that my mum had just come home, and in that split second I had that moment where I thought, ‘What the fuck are you doing? Phone your mum.’ I didn’t have to say anything, bless her. She just picked up the phone, heard me crying and said ‘I’m coming’ and just ran. Since then David’s just hidden all the knives, all the razors, all the scissors, all the medication because the psychiatrist explained to my mum, if I’m that desperate I’ll try anything. I’m under constant surveillance at the moment. I’m going to the mental health clinic once a week. My mum is babysitting me all the time – I’m never left alone. The only reason she’s not here today is because I had the psychologist, then you, then I’m seeing a girlfriend at three o’clock. Otherwise, she’ll literally phone me at 10 and if I don’t answer because I’m in the shower or something, she’s over here, she’s letting herself in. I’m not left alone until this is passed. Initially I thought, ‘I’m a fucking adult, don’t insult me.’ Now I don’t know if I can go an hour on my own, I get lonely. It’s making me clingy, it’s ridiculous. I’m swinging from one emotion to another, it’s very annoying.
David’s been quite clever. I got up in the middle of the night to try to do it because I knew he’d be asleep, but that’s when I discovered he’d hidden everything. I got back in bed. I was seething, angry. When I went to make dinner the other day I phoned him up and went, ‘Where are the fucking knives? How am I supposed to make dinner? I’m trying to cut a carrot with a normal dinner knife! It’s like trying to serve up a turkey with a spoon.’ Then I had to text my friend Tina, I was like ‘Babe, can you wax my legs for me? David’s hidden all the razors and I’m starting to look like a gorilla.’ She just put back, ‘Well that’s your own fucking fault isn’t it?’ [laughs]
We’ve had a bit of a laugh with it because it suits me better. Initially David was very much, the head tilt [soft voice] ‘Well, are you ok?’ I told him to stop that and almost be like, ‘You selfish bitch, don’t you ever do that again.’ A couple of my friends who know me very well have been texting me going ‘Oi, you nutcase’ or ‘In the looney bin yet?’ That’s better for me, it keeps it real. I’ve been like that with all my health problems since I was little, and anything that I’ve found difficult, I’ve always tried to find humour in it. Even when my dad died, I was making jokes.
It’s bought David and I closer together. When I don’t feel very well, like I’ve been doing, I can be quite needy and cuddly, touchy. Which is weird because normally I’m like, ‘Don’t touch me’, but this time I’ve been ‘Cuddle me, pay me attention’ and David is loving that as he is such a cuddly person. It upsets him sometimes when I push him away. The though of doing this on my own… I just can’t. The thought of having anybody else around me other than David, he’s my husband, the whole sickness and in health thing. I do push him away but I know it’s something I need to work on.
I’ve been claiming employment support allowance for the past year. I can work limited hours, it’s like a top up to your wages. It’s not money from the government, what they do is work out how much tax you’ve paid since you’ve ever been working and pay you each month back from that. Obviously when I was assessed I didn’t have all of this other shit. They recently wrote to me saying that I was fit to go back full time in early September. I phoned them up: ‘You’re having a fucking laugh, aren’t you? I’m actually iller now than when I first started claiming!’ They are sending me some forms to appeal it. My psychologist is also writing a statement to support that. So we’ll see how it goes. I’m still at the chiropractors, I’ve reduced my hours even less to 10 hrs a week but I think it’s important that I still go out. They taped my knees for me and do some other treatments too. For those five hours twice a week, I’m not thinking. I’m in pain but I just shut up and take pain killers as I need to interact with people. I’ve only missed one day since the suicide attempt. It’s a thing to get me out of bed.
I’ve been playing Candy Crush a lot at the moment. I’m addicted, obsessed. I’m on level 70 or 80 now. When this passes I probably won’t touch it again as I’ll associate it with this big period of depression.