ME Awareness Day encourages you to go blue in 2019 as it highlights the stories of those suffering and their fight to find a cure.
Myalgic Encephalopathy (ME) and Chronic Fatigue Syndrome (CFS) are illnesses which cause extreme fatigue and aches, and with there being no known cure, those who have it are raising awareness to bring it to light and hopefully encourage doctors to take a closer look.
In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset. The symptoms can also range in severity between those who have it.
Sunday the 12th of May is ME Awareness Day, and mass support can be shown through bright blue message through social media. Blue is the colour of ME, and many are promoting the cause with blue hair, blue faces, and blue ballons.
Anna Mason has lived with ME for 10 years, and has gone through education fighting her fatigue. She suffers symptoms such as aches, swollen joints, and shaking episodes. But, at the beginning of her ME, her symptoms were worse and led to her being unable to go to school as she couldn’t walk up and down stairs.
“My life was moving from a bed to a sofa.”
Due to her ME affecting punctuality at school, Anna dealt with bullying from her classmates who didn’t take her condition seriously, even though she was bedbound and every day faced bouts of pain. After managing to gain enough funding, Mason started to attend Manchester Children’s Hospital, which became her second home. Visiting the doctors and nurses every two weeks for four and a half years, it was a long process and managed to make her feel ‘normal’ again.
Mason showed success when in 2017, she was accepted onto the university course of her dreams, and began studying Broadcast Journalism at the University of Salford.
Currently at university, Mason talks about how it’s affected her day to day life.
“In my first year, my ME didn’t really affect me, it was much under control. But, since Christmas, I’ve had a flair up and it has affected me coming to lectures, and its also affected how much I concentrate because I struggle.
“I have three hour lectures, and after an hour and a half, I’m drained and I just can’t concentrate.”
Mason advocates awareness for ME on all of her social media, and the platform has allowed many people to get in contact for help.
I don’t want M.E Awareness week to end!! It is so nice to see how much it is being talked about this year☺️ In the 10 years i have had it, this is the most I’ve ever seen it on social media!! ? #MEAwarenessWeek
— Anna Mason (@annaa_mason) 8 May 2019
“When I was first diagnosed, I didn’t know anyone else with it so it’s nice to talk to people that have it because you don’t feel like you’re on your own. I’ve shared my experiences of how I’ve got better, and they’ve been trying to do it too.
“A lot of people have said that what I’ve been doing is really brave, which in a way it is brave because years ago I was embarrassed and wouldn’t talk about it, when I met someone new I wouldn’t tell them, I was in denial and I just wanted to be normal, and in the past 4 years that’s when I’ve accepted it. I’m going to live with it for the rest of my life so I may as well embrace it.”
M.E. remains a largely hidden disease. There is a lack of medical care and no effective treatment – and yet it can lead to greater functional impairment than multiple sclerosis or cancer – Dr Charles Shepherd, Hon. Medical Adviser, ME Association
Susan Holt, from Swinton, has lived with ME for seven years following a dark period in her life. A family car crash, a house fire, and witnessing a death at a care race in Bangor were three incidents Holt couldn’t control and their impact weighed on her and she believes it had triggered her ME.
“Nights before work I wasn’t sleeping. I had got to the point i couldn’t function, so I had to go on sick leave and things went from bad to worse. I had so much little energy i felt like if this is what dying felt like then this would be okay because I felt exactly how dying felt like.”
Attempts to gain less energetic work or flexible hours were unsuccessful and Holt was left at home.
“Everything was gone. My kids were grown up, my job had gone, and I couldn’t socialise the same. I’ve lost friends because of it because they don’t understand because you’re out of sight out of mind.”
“It got the the point that I was spending most of my life in this room, my family were carrying on, my husband was carrying on otherwise he’d be sat around waiting for me to wake up. It affects him, it affects him a lot. We try and plan things and get prepared, and I can get ready and I’ll end up back in bed so I can’t predict anything.”
The body fatigue Holt faces causes pain in moving, so on her bad days, to get to her bedroom she has to crawl up the stairs. The fatigue also can cause Holt to spend three days straight in bed, or many nights awake as she can’t get to sleep.
“People don’t realise that your brain is a muscle, your tongues a muscle. I’ve been out for a meal, and then you can’t eat because you can’t chew it because your tongues hurting.”
“I’d love for somebody to be here when I wake up, but i don’t want to expect somebody to give up their life for me.”
Holt has also experienced bullying from members of the public who don’t take her ME seriously due to it being an invisible illness. She has been refused chairs in shops to sit as her muscles are aching from standing, and so has had to physically sit down, and has had people told her they’re “glad she’s disabled” in parking space debates.
Holt has tried many methods to overcome her ME and her Fibromyalgia, from activities charts and CBT. But, one place that has welcomed her and made her feel happy is at START in Salford. START is a group that helps combat people’s loneliness and problems through arts and crafts.
Holt has created many projects, from woodworks to embroidery, and when discussing them, she sounded extremely proud of what she has done.
Holt has began to work through crafts, with her creating a crochet page to help those from home about how to learn the art of knitting, as well as being involved in the Swinton Fairies group, in which fairy doors are made and placed in Swinton parks in order to entertain children and make the park more appealing.
Holt struggles a lot with ME, and the inability to have her old life back. After falling to dark times, she hopes to look ahead and start to have a brighter future. But, due to there not being a cure for her illness, she can sometimes fell helpless.
“My mother tells me to go to the doctors, my husband tells me to go to the doctors. But there’s nothing the doctor can do. There needs to be another kind of support, but I don’t know what. Initially I would adapt because I can now peg my washing up instead of placing it on hangers because it was easier and half the effort. But now I’m lucky if I can even make it down the stairs.”
With there not being a cure, to raise awareness is vital for others to see and campaign for more money to be placed into helping.
For more information or to get involved on ME Awareness DAy, check out the ME Associations page
For more research on ME, check out the NHS page