Share a story – Anna

As a child I used to dream of the day when I’d be allowed to lie in bed all day. I naively thought that when I was an adult I’d be able to do what I wanted, when I wanted, and that the more time I spent in bed the better. That was until the day I was forced to lie in bed with no way to know if that was something I’d have to contend with for the rest of my life or not. Having dreamed of being able to lounge about, living in pjs and comfy clothes, all of a sudden all I wanted was to be able to get up, go for a run and work full time. It’s just typical that we can want something so, so much, until it actually becomes our reality and we realise it wasn’t all it was cut out to be. I think we all do it though – when I was a child I used to be desperate to have curly hair and then, in my teens I discovered that it was actually pretty curly if I looked after it well and all of a sudden all I wanted was for it to be dead straight!

To give you a little background, I’m 25 and was working towards my dream of becoming a clinical psychologist when I became unwell. I was studying full time down in Southampton and was also working bank shifts for a local CAMHS Psychiatric Ward and as a Clinical Support Worker for Solent Mind. I had a decent social life, never missed a lecture (apart from one in freshers – the hangover was horrendous ), went to the gym and was training for a marathon. On the outside my life looked amazing – and that’s what I wanted people to see. On the inside, however, I was falling apart mentally and physically. I was diagnosed with Fowler’s Syndrome at the start of my training at uni and it turned my life on its head. My mental health plummeted and I spent a long time sectioned under the mental health act. My life revolved around my eating disorder because it was the only thing I could control and it very quickly became apparent to people that I was struggling with my health more than ever.

My fatigue was pretty well managed whilst my mental health was so bad. I had issues with energy but nothing that was a huge impact. But then I had back to back Kidney infections that frequently turned septic and I was later diagnosed with M.E. as a result of Post Sepsis Syndrome. I felt so angry with the world – I worked so hard with my mental health team, got to a place where I could live independently and found the perfect flat. I was ‘back in the world’ so to speak and the doors had opened – it was my oyster. But soon my world shrunk and shrunk until it was the four walls of my flat and occasionally going to the hospital. I began to grieve for my old life. I was desperate for some sort of normality – I tried to bargain with my body: ‘I won’t try to run today but if you could just let me walk to the end of my road’ – over and over again and very quickly learned that that’s not how M.E. works. No amount of bargaining gets your body to function as it should.

Lots might argue that being a psychologist should or could have prepared me or given me the tools I needed to cope. And it did to a certain degree but there was still a lot to learn. The one thing I wish someone had sat down and said to me right at the start was ‘it’s okay to grieve for your old life’. We know SO much more about grief now than we ever have before. A lot of people still assume that grief is primarily something that happens when someone dies – we all know about it in that context. But can’t we argue that part of us dies when we develop something as debilitating as M.E.? I know I certainly felt (and still feel) that way. It takes a lot of adjusting to our new kind of normal – a normal that is unpredictable, difficult and forever changing. We might have feelings of grief for the rest of our lives – like a continuing spiral or a river that ebbs and flows. But that’s okay. Let yourself sit where you are right now, let yourself feel the all the feels. And remind yourself that it’s not going to feel the same forever.