02 March, 2013
M.E., my Mum and me x
If I had a penny for every time I had tried to explain my Mum's illness to a friend, colleague or boyfriend I wouldn't be very rich, because to be honest I don't try to explain it any more. Those who get it get it, and those who don't probably never will.
The first thing about M.E. is that far too many people confuse it with mental or psychological illness, a nervous breakdown, agoraphobia or (and I'm not kidding) 'laziness'. When science can't explain something and medicine can't cure it, then as a society we love to call it mental illness, put a pin in it and leaves those who suffer with it to fend for themselves. It isn't that long ago that people with learning disabilities were considered by medical professionals to be 'imbeciles' and tied to a pole in a cold room all day because no-one knew what to do with them. It isn't that long ago that society thought homosexuality was a mental illness, that perhaps could be 'cured' of with therapy or time. Disgusting, right? Let me tell you now - coming from an intellectual, educated, objective and open-minded person who has first hand experience of the disease - if you believe M.E. to be in any way 'in the mind', or have even considered that someone suffering with chronic fatigue might be 'lazy', then you are just as disgusting.
We all know someone who is lazy. They don't want to work. They don't want to go outside. They probably live in disarray and they probably won't get very far in life until they get off their ass and do something. That was not my mother before she got ill. At the time she first got ill, she'd had 3 children - aged 9, 7 and 3 - was being a full-time single mother to those children, was studying on a teacher training course to learn how to support herself and her 3 girls as newly single mother and was paying bills, running a household and trying to have a hint of a social life. When she was sad she took us out on long walks, she made us nice dinners with not very much money and she fought every hour god sent to give us all a good life. Everything about her in the years before she got ill screamed fighter, worker, hero. Nothing about her choices and behaviour said 'lazy' or 'weak'.
Unfortunately, when I was 7 years old, Mum's body chose for her. It gave up. And I can't say I blame it, after all she had been dragged through. While in her mind and tainted-heart she was ready to keep fighting, her body said no. For days, weeks and months no-one knew what was wrong. Doctors did tests, but no-one understood what was happening or could give her a pill to get her back on her feet. Those first few years of Mum being ill are a blur. I knew her muscles hurt, I knew she couldn't get out of bed easily or cook us tea, I knew if she did too much she would feel ill like you do with the flu but much much worse, I knew she was very sad and lonely and isolated and I knew that beyond me and my sisters, not many people understood her.
My earliest memory is of the Home Help we had - a stream of slightly strange women who picked us up from school and cooked us lumpy mashed potatoes, while Mum lay upstairs willing herself to get better with every cell in her body, and various people who social services sent to do our cleaning and get our shopping. I didn't like those women cooking me my tea. I would go and sit on the end of my Mum's bed as soon as tea was done, or whenever I could after school, because even though she was just upstairs I really missed her. I'd sit on the end of her bed and tell her about my day and before we went to bed at night me and my sisters would all sit in her room with her, sometimes laughing and chatting, sometimes trying to cheer her up when she was sad.
My first holiday away without her, our grandparents took us all to their house in France with my cousins, aunties and uncles, and my heart hurt so much knowing we were all there while she was lying in bed back home, alone, in every kind of pain. I will never forget bursting in to tears that holiday, too young to cope with the hurt, crying that I wanted my Mum to get better. I felt so home sick and so worried for her. As I got older I learnt to cope with that pain and we adjusted to going on holidays without her, but that pain for Mum never really went away and it's still there with me today, everywhere I go.
Naively, for a long time, I thought Mum would be one of the ones who got better, like some people with M.E. do. Every single birthday, when I blew out the candles on my cake, that would be my wish, and every year I would be disappointed. She tried everything to get better, especially in the early years - herbal remedies, spiritual healing, exploring various beliefs, reading hundreds of books when her arms would allow her to hold one and so many different things that might might might be what helped her get better. When your world shrinks so small, your mind opens and you have to give everything a try, but 20 years on, while she has made great progress, my Mum is still ill.
There have been good times, where shes been able to cook and go for short trips and walk round the park over the road, but those times have been sparse. She hasn't been able to come and visit me in Sheffield except for my graduation (which was amazing to have her come to!) or go away with us on holidays or do most of the things many mothers take for granted. I try to text Mum most days, me and my sisters visit and call her a lot and make the most of the days when she is well enough to enjoy life with us, but that pain I carry, that guilt that I'm living my life when she can't, never ever goes away.
I don't feel sorry for myself about it really, but I do feel sad for Mum. For the past 20 years she hasn't been able to go on the long walks she loved so much, she never did get around to becoming a teacher and she is so aware of all of the things she's missed out on while she's been bed-ridden. She's amazing though, an inspiration, because most of the time she is so positive. She will find happiness just looking down into her pretty garden, she is genuinely happy with a simple life and she manages to create a life for herself even with the most limited means you can image - it's something I am so proud of when at times she only has strength to lie in bed and listen to the world outside. It puts my life into perspective too, as I am so aware of how lucky I am and of everything that I can do - it's safe to say I throw myself into life and take everything it offers me. I also know without her incredible influence I would not be the person I am proud of being today.
I have than more accepted my Mum's illness and in some ways am thankful for it - she has been there for me 24/7 in ways that most mothers can't be for their children, she has used her experiences to always give me the very best most wise advice, and her illness has definitely helped shaped me and my 2 sisters into being kind-hearted, sensitive and essentially good people.
One thing I don't accept, and will never accept, is the stigma attached to M.E. and the assumptions made not only by those who don't 'get it' but by those who really, really should know better. If you look at the life my Mum has had for the past 20 years, I can categorically promise you that it has not been a life led for the sake of laziness or a mental breakdown or any other kind of psychological illness or phobia that could have been overcome. How many people do you know would sacrifice walks, holidays, friendships, relationships, visiting their grown-up daughters in their homes, trips, treats, work and all those other things that make a life, unless they had absolutely no choice??? The only way to explain my Mum's M.E, is to say it is a prison. She has all the will in the world to go out and live, but her body has locked her in. I challenge anyone who challenges that to walk a day in her shoes.
In a few month's time I will be doing the Sheffield half marathon for the 2nd year running and again will be raising money for the M.E Association. While there is such a long way to go for ME, in terms of removing the social stigma, gaining understanding and actually finding a medical cure or even remedy, we have to start somewhere. It may not happen in my lifetime, but with every mile I run for M.E., with every time someone writes about their experiences of it, with every person who opens their mind and trys to understand it - we might just make progress.
Sponsor me in the Sheffield Half Marathon run at www.justgiving.com/HanRunHan or just show me support by mentally cheering me on! Learn more about M.E. here.
Love and thanks.