Remember the worst bout of flu you’ve ever experienced. Does the thought of it send queasy sensations down your spine?
Now imagine feeling like that, but worse, every single day of your life. 24/7. Unrelenting malaise.
Imagine the body you used to walk in working against your dreams, hopes and aspirations. Imagine an invisible disease that stops you getting out of bed everyday. That’s what life is like for someone with M.E. Just ask Alice.
You might recognise her. On Channel 4‘s First Dates she opened up about M.E.:
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Alice told UNILAD how she prepared for her date while tackling her invisible illness:
When I’d had my date booked in I made sure everything was planned out well in advance, like travel and my outfit. I was really lucky that I was having a good day.
When you have M.E. every day can be so up and down. Waking up every morning feeling like you haven’t slept and a bit like you have the flu takes its toll.
The closest feeling I can compare it to is a constant killer hangover – only I didn’t have the epic night out the night before!
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Alice explains how the most mundane of tasks – like washing your hair, doing a food shop or taking the tube – require a huge proportion of her energy reserves.
The young woman, who may look fit and healthy to you and me, said she needs to plan these tiny details of everyday existence in advance to avoid another episode, the likes of which left her bed bound as a teenager.
It’s the payback afterwards that sucks the most! The more you push through it and do, the worse you get.
After all, the bad days are pretty dismal. Alice has many ‘not so great memories’ from her teenage years, which were spent wheelchair-bound, transported from hospital beds to hers at home, unable to do anything but ‘keep on keeping on’.
She recalled her lowest moment, when M.E. had sapped all her strength:
I remember being in the garden in my wheelchair. My cat, the love of my life – I even have his paw print tattooed on me – was next to me and I sat there sobbing as I didn’t have the energy or strength to pick him up and cuddle him.
I was in bed all the time and on loads of different pills from the doctors. I’d lost the feeling down my left side and just didn’t have the strength to hold my head up.
That ordeal was just one of many incidents consigning Alice to hospital, which she described as ‘bloody awful’.
Myalgic Encephalomyelitis (M.E.) is a long-term chronic, fluctuating, neurological condition that affects an estimated 250,000 people in the UK, including around 21,000 children and young people, according to Action for M.E.
It’s widely misunderstood as sufferers tend to look ‘fine’ even when they can’t complete the simplest physical task.
Alice was diagnosed with M.E. in 2004 as a West Sussex 14-year-old, after contracting glandular fever. At the same time she found out she also has Crohn’s Disease, a debilitating condition that affects the digestive system.
Once I knew that, it was down to pure determination to try and get well with physiotherapy, graded exercise therapy and cognitive behavioural therapy.
I spent a good few years in the wheelchair and had a stairlift built into my house. I would get major FOMO and try so hard to make it into school, even for just a few hours but each time I pushed harder I would just spend even longer in bed afterwards.
I remember people at school saying things like: ‘You’re so lucky you don’t have to come to school!’
They really didn’t get it! I couldn’t watch TV, or tolerate any noise or light for a long time.
Just posted my weekly #blog ?✌?LINK IN BIO!!! All things #ME #mecfs #honest #spoonie #spoonielife #spooniewarrior #crohns #crohnsdisease #gcasfm #depression #singer #songwriter #life #funny #tumblr #uplifting #inspiration #positivity #positivethinking #positivethoughts #lp #lightiningprocess #cfs #chronicillness #chronicfatiguesyndrome #invisableillness #nlp #neurolinguisticprogramming #myalgicencephalomyelitis
M.E. is anything but enviable. What some might see as an excuse for a never-ending sick day, sufferers understand to be an endless prison inside your own body.
Alice told UNILAD about the hardships of her ongoing recovery:
Each day I would go from taking a few steps – literally – to another few steps the next day. Over a few weeks I could walk to the bathroom and back, then the hallway.
Months later I would be able to walk to the end of the road and back. After more months I could walk around the block – you get the idea.
See you on the other side mo fo's ? and if I don't… then don't bother with a funeral… too much money… although I would quite like a cool coffin, maybe a mint green one… with white handles! Oooh!… anyway… just having a little op, nothing too terrifying, but having a general for it so am a little nervous maybe ? my health has been a constant battle since I was 14, and sometimes I can't believe it's still being such a wanker, but I am learing to appreciate all that I do have, and working on that ? Big loves to all my close friends and family ?? xxx #fashionforward #spoonie #spoonielife #spooniewarrior
Alice has coped with M.E. for a decade yet still gets relapses – the latest one lasting for nearly two years – and she’s ‘always finding different ways to cope’.
Prior to her diagnosis Alice was in training to become a gymnast and dancer. She laments: ‘I can’t even do a forward roll now!’
Ever the optimist, however, the singer, who has lived in London for five years now, said there have been some ‘strange silver linings’.
I’m not gonna lie, if I could wave a magic wand – which the doctors keep telling me they don’t have – then yes I would get rid of the M.E.
I want nothing more than to feel okay each day and be able to do all the things I am so desperate to do and follow my dream.
But I am closer to my family and my friends than I think I would have been, and I feel like I wouldn’t be the person I am now.
Before I got ill I’d never written a song before, and the first one I wrote was when I was quite sick. Listening back, it was awful, but you’ve gotta start somewhere right?! Maybe I still would have been a singer and a songwriter…
Nothing feels better than standing on stage and singing your heart out to a crowd full of your friends, family and fans who all got your back ? Thank you to @grahamcannphoto for capturing this moment ? #24obsession #singlelaunch #livemusic #gig #london #singer #songwriter #performer #hospitalclub #oakroom #body #lace #leotard #furjacket #braidstyles #braidstyles #braid #braidideas #slay #workit #topliner #actionforme #spoonie #spooniewarrior #independentmusic #independentartist #unsignedartist #upandcomingartist #newmusic #newmusicalert
Alice certainly has the raw talent and determination to pursue singing, and she’s refused to let M.E. stop her achieving success.
While you might recognise her face from First Dates, you’ll definitely recognise her voice from the catchy McDonald’s jingle, I’m Lovin’ It.
She battles through, and has recently released her single 24 Obsession, with the help of ‘an amazing network of producers and co-writers who understand what I am going through and we manage to make it work’.
Sometimes Alice wonders if her taxing schedule is too much, but adds:
It’s been a tough one… But then there’s nothing else I feel so passionate about other than my music! I just hope one day my music will get heard.
I try and write songs that move people or make them feel something. So when I have a really sh*t day – and if I have the energy – I write about it. It’s my therapy!
The twenty-something also has a blog where she admits she rants about M.E. as a release. In her latest post, she explained how she has been holed up at home for a fortnight with exhaustion after her single release.
In my element ✨?? Photography by ?: @dlprophoto #singer #songwriter #gig #livemusic #stooshe #tramp #tramplondon #trampmayfair #mayfair #london #subdivision #londongig #music #upandcoming #unsignedartist #unsigned #independent #newmusic #newmusicalert #photography #jewellery #evrajewellery #photographer #bracelet #dress #boohoo #boohoofashion #spoonie #spooniewarrior
I wish I could have really enjoyed my single launch gig and not just focused on trying to get through it.
I wish I didn’t have to rest in bed for two weeks after performing for 45 minutes. I wish I could follow my dream and put everything into it. I wish I didn’t have M.E.
I know I sound like a right moany Mary, but it just sucks. I don’t know what’s worse: being given a taste of what life could be like and it taken away from you every time, or just not tasting it at all…
If you need advice about coping with M.E. call Action for M.E. on 0117 927 9551. The Samaritans are always there to listen, and give emotional support, via their anonymous freephone line on 116 321.