Battling chronic fatigue syndrome through music
Singer-songwriter Alice Ella – who grew up in Horsham and now lives in Brighton – describes the joy of escaping in her new single Somewhere Else.
The context for Alice is years of struggling with ME/chronic fatigue syndrome – an ongoing battle.
“Somewhere Else is about the feeling that you get when you are immersed within the intimacy of a relationship, that escapism you get when you are kissing or doing the deed!
“It is about escaping your troubles and your body when you are in that special moment with someone.
“It’s about good escapism.
“Personally I mean escape from my health. I feel trapped in a body which doesn’t do what I want it to, but in those moments you feel free and you escape from yourself.
“I feel really passionate about raising understanding and awareness of ME and CFS.
“I got it when I was as school, when I was 14. I was a healthy happy teenager.
“I was doing dance shows and gymnastics and very passionate about life, and then I got glandular fever and basically never got better.
“I then took a few GCSEs from my bed, but the very long story is that I got to the stage where I spent a good couple of years wheelchair bound, couldn’t walk, couldn’t talk, couldn’t speak.
It was known as severe ME.
“I did lots of physio and CBT and graded exercise therapy.
“I feel like graded exercise therapy did help me, but I feel like a lot of people don’t take it seriously enough or realise that it needs to be slow.
“Generally, I am OK now, but I keep having relapses.
“I had about three years when I was much better when I moved to London and I was gigging four nights a week, but I had a big relapse about four years ago.
“I was back on a sofa for a year. Then I got better.
“Then I had a relapse, and then I moved to Brighton because I realised I hadn’t gigged for two and a half years.
“I still haven’t started gigging again yet. I am still not able to, but I moved to Brighton to work on my health.
“I am lucky with what I do in that I can do a lot of it from home.
“I can record a bit from home. Releasing music is very digital and online, but I have not been able to do a single-launch gig for a number of years.
“ I did a gig about two and a half years ago, but it gave me another relapse.
“I think acceptance is the key – otherwise you are literally torturing yourself.
“If you just sit there feeling sorry for yourself, you are not moving forward and you are not enjoying the life that you do have.
“ I don’t have severe ME anymore. You have just got to make the most of every little situation, and I am grateful for the amazing friends and family that I have got… and for my cat!”
The continuing problem is that it is an invisible illness: “I had a little card asking people to give up their seat, but you wouldn’t believe the amount of **** I used to get, people asking me what was wrong with me, asking me where the disabled person was, some people really having a go.
“It is so difficult when people don’t see a bandage.”
Hence the visions of freedom in Somewhere Else: “The video has got a lot of vintage footage of people experiencing lots of different versions of freedom.
“ It is almost like day dreams of all the things I wish I could do.”