Salted peanuts and are never going to be a good idea at the moment!

I play the viola. I started when I was in primary school. I played violin [originally] and changed to viola when I was 14 because, apparently, I had big hands.  I haven’t [played] for about a year because one of the side effects of my illness is my hands get quite badly affected so I can’t actually manage at the moment. I miss it a lot. It was the one the one thing that I had for myself when I was [working] full time. I’m looking forward to getting back to it.

I have chronic fatigue syndrome, which is what used to be called ME.  It means that I get incredibly tired. It hits me like a big wave of water, you know that feeling, when you’re stood in the sea and then you get hit?  It’s almost like it knocks you off your feet. It’s so sudden and you can’t necessarily feel it coming. For a long time it felt like someone had cut off my hands and feet and replaced them with someone else’s, they didn’t feel like mine.

Certain foods I really struggle with, too. Takeway pizza is the best example because it’s really high in salt, it’s fine while I’m eating it but it’s a couple of hours later… one of the side effects of chronic fatigue syndrome is that you’re often permanently thirsty. Having things that are too salty just exacerbates that even more and you end up waking up in the middle of the night with pain, it’s like a dehydration, and then you just can’t drink enough- salted peanuts and are never going to be a good idea at the moment! It’s just weird. I have one sleepless night in about eight or nine. So I stay awake and it’s really annoying, *laughter.* It makes no sense.

I think, to be honest, [depression’s] been something that’s been part of my life since I was a teenager. So I guess I’ve always been aware but was never willing to accept until I was formerly diagnosed, I don’t know, about 6 years ago or so. The first time I really did something about it was when I found myself in a situation where I was entirely alone and I felt incredibly vulnerable. I wasn’t sleeping and there were all sorts of issues with that and so I went to the doctor. He talked through a few things with me and I answered his questions and he just went ‘You know you have depression don’t you?’  I felt like I’d lost, somehow. If life was a battle then I’d lost it. That was it. Nothing that I wanted was going to go right, or happen, it was just incredibly lonely at that point.

I think I definitely have learned to manage [my depression] better. I’ve learned that it’s ok and that I can definitely live with it in a much more positive way. It’s more like it’s part of me rather than being on top of me. Now, because I can work with it and think around it, it doesn’t bother me so much. I almost don’t have any problem saying it now, whereas before I probably never would have said.

One of the things that has annoyed me most about being ill is that I’ve been really limited as to what I’ve been able to do outdoors. Big spaces make me feel quiet, relaxed and at ease with myself. I like it when I’m somewhere and it’s just me and the big open space, I like that feeling of quiet, it’s peaceful, it’s really hard to explain but in my mind it’s almost like I feel better, just being there, even when it’s cold. When you’ve got that bit more time and headspace to appreciate things it’s nice to take that step back and actually watch.

Towards the end of the time when my illness was at its worst, I was really struggling to accept that there were all these physical  things that I couldn’t do. Basic stuff, opening jars, threading needles, anything fine-motor. Walking to the shops, things that people take for granted and a lot of them I still can’t do. [I cried] tears of frustration, tears of anger and annoyance. It was a really difficult thing to deal with. I think I felt incredibly guilty, for the whole time that I was off, I felt like I was letting people down and that in some way I was responsible. Whereas now I don’t feel that, because, actually that’s not true, that’s not how it was and I’m sure if I saw anyone from [work] they would say the same.

I got to the stage where I was dragging myself to work, I wanted to prove that I could and that I was good enough, and it got to the point where I couldn’t because my fiancé called a halt to it. One morning, I think it was a Wednesday or Thursday, I got out of bed and collapsed on the bedroom floor. He called [my work]. He just went, ‘No, that’s enough. She needs to get better,’ and from that point onwards, I’ve not been back. I no longer work there.

I think when my contract ended that helped, that was just a line in the sand and it meant I could move forward. From that point I’ve been able to look back and just think, ‘Well, the world didn’t fall in,because I wasn’t there.’ Nothing seems to have changed. The CBT [helped], talking to my counsellor about it and just putting things into perspective really, and not blowing them up into massive big deals when actually they’re nothing compared to what they were in my mind.

The [workplace] I currently work for know. They know I’ve been ill. They know about the mental health side of it. I said very clearly that I will do what they ask me to do as I am recovering from the physical side of it, but the moment there is any deterioration I will stop and they agreed. They are quite happy to do that, which is refreshing. It puts me in quite a powerful position that I am in control of what I do.  This has been the first time in my whole career where I’ve actually had any sense of control of what I do. It’s really, really empowering, even though in the back of my mind there are still issues about, ‘Oh my God, I’m not doing enough because I need to pay the mortgage’ or, ‘I must look really lazy because I’m at home quite a lot’ or, ‘I’m only working this number of hours this week or next week, what am I gonna do?’  Whether it’s a physical condition or a mental condition or both, you need to be open about it, because, especially in my case, I feel like I want a badge, I want someone to make me a badge saying  ‘I’m not lazy, I’ve got chronic fatigue syndrome.’

I’ve actually spent some time doing things that I want to do. So I did a photography course and I’ve been doing mindfulness colouring books. I’ve been using that to help me relax, I’ve read books, I’ve been out and about a little bit, within the realms of what I can do and it’s   interesting just to not feel that constant treadmill of, ‘I haven’t done this, I haven’t done that.’ It’s nice to have the space in your head for other things and you start to see things.  You sort of think, ‘Wow, this is really nice. I’ve missed out on this.’