“It’s not a life, it’s an existence” – these are the words of one local woman who has been living with Myalgic Encephalomyelitis (ME) for the last six years.
Every day Nicola McPaul struggles with the condition which affects her whole body and as an award winning film about the illness is set to be screened at the Hippodrome in Bo’ness this Saturday she’s decided to speak out about what life is like living with the crippling condition.
People often consider ME, which is frequently referred to as Chronic Fatigue Syndrome (CFS) to be ‘just being tired’ or an excuse for laziness, but with so little understanding about the condition, the 41-year-old is keen to share her story and raise awareness that it is much more than just that.
She explained: “My symptoms first started in April 2012, my little girl had just had her first birthday.
“I had been unwell with bronchitis and I started to feel overwhelming fatigue and it just never left.
“I started to experience shooting pains in my arms and legs. It was a real struggle and things went down hill very quickly. By the November I was on my hands and knees in agony, screaming and I couldn’t walk. November 4, 2012 was the last time I left the house unassisted.
“It was the last time I was able to go to work.
“I went from being a fit, healthy new mum, full of life and with a great social life to being unable to leave the house.
“My husband Alan and I were loving life and our world was just turned upside down.
“I’ve been housebound ever since really - if I go out I have to be taken in the car with my wheelchair.
“I don’t have the social life I once had, going out is a real struggle and if I do go out these days it’s usually to attend medical appointments.”
Because of the condition, Nicola spends most of her time in her Brightons home missing out on many aspects of life.
Unknown to many, ME affects the whole body and can have a huge impact on those with the condition and their families.
“I’ve missed out on so many things in Miren’s life - I can’t take her to school in the morning, I can’t take her to dance classes,” she said.
“I have to rely on my mum and husband to do everything for me, when I should really be looking after my mum.
“I’d love to be able to walk to the park at the end of the street with my little girl, but I can’t.
“Miren is a really strong, caring, thoughtful little girl and because of my situation she’s incredibly kind and helpful. She wants to do what she can to help her mum. She doesn’t remember me ever being well.”
Nicola hopes that those who take the time to watch the documentary ‘Unrest’ will learn a lot more about ME and the impact it has.
And Nicola’s family will be among those at the Hippodrome screening on Saturday.
“It’s going to be emotional,” she said.
“I’ve seen many clips from the film and it’s basically my life and to see that on the big screen is a big thing. Jennifer Brea has really brought attention to the condition.
“It’s a really, really difficult condition and there’s no cure.
“You just have to try and make the very best of the small windows that are your slightly better days. You just have to enjoy the little things.”
She hopes the film can help change people’s views and educate them in the condition.
She said: “People are completely oblivious to how difficult it is to live with. There is so little knowledge and understanding for it.
“The times when you do get out and people see you they’ll comment on how good you’re looking, but what they don’t realise is you’ve been in bed building up to getting out for days before hand and after the few hours that you are out you’ll spend the next week in bed recovering.
“There are different scales of ME and a lot of people are still able to partially function and maybe work part time, but they still struggle every day.
“It effects every part of the body - the nervous system, the join pain and your cognitive abilities.
“You constantly feel like, the best I can try and describe it as, is like you have the worst hangover ever and the flu and you’ve run a marathon all at once.
“The smallest tasks are impossible and it’s the silly little things you take for granted.
“To have a shower and wash your hair is the biggest event. Brushing my teeth in the morning feels like I’m swinging a hammer.
“It’s so much more than just being tired, there are a plethora of symptoms that come with it.
“It would be good for people, including medical professionals, to understand more the impact ME has.
“I really wish it was just being tired all the time.
“It’s a tiredness that you can’t alleviate with no amount of rest or sleep making you feel better.
“It’s just always there. You never seem to get a break from it and it feels like every single day is a battle.
“It’s not the life I imagined, but I’m just very grateful to have the support I have from my family.”