Never Give Up
Since starting M.E. Support 19 years ago, how do you feel people's attitudes towards the illness have changed?
From a personal point of view, people are now more familiar with the name Myalgic Encephalomyelitis (I even get asked what M.E. stands for and how to pronounce it), or they know someone who has the illness. The media coverage has certainly improved from the ‘Yuppie Flu’ days, which has helped people understand M.E. better as well. I do still get ‘Oh that’s where you’re tired all of the time’, or comments as though it’s psychological, but thankfully this happens less often these days. Unfortunately, I’ve seen little improvement in the medical profession’s attitude towards the condition. I used to be faced with doctors who had no or limited M.E. knowledge, yet it seems more like a personal preference these days. Regardless of that, I’m now hearing more positive experiences and that gives me encouragement for the future.
From a professional point of view, newly diagnosed sufferers used to approach me having never heard of M.E., although they now usually have a little understanding of the condition. The internet certainly helps people learn more about the illness; however, it’s become somewhat of a minefield – click on the wrong link in a search engine and you could be given completely the wrong impression. Medical professionals used to consult me totally baffled, but they now seek guidance on helping their patients manage the M.E. I have received hate mail from anonymous troubled souls since launching M.E. Support, although the messages arrive less often these days, which I hope is a sign that people are coming to terms with the reality of this devastating disease.
As you are a sufferer as well as campaigner for awareness and support for this illness, where would you hope acceptance and advances in research will be in the next few years?
Acceptance will only come when we have clear-cut information about M.E. We need a universally acknowledged name and diagnostic criteria, along with guidelines for treatment and management. Research is constantly shedding light on new possibilities, although it can seem like one step forward and two steps back at times. More recently, funding for the world’s largest genetic study into Myalgic Encephalomyelitis was announced. DecodeME hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing M.E., and the underlying causes of the condition. Exciting studies like this give us hope for the future, whist encouraging more research into this complex neurological condition. The Millions Missing global campaign is demanding increased government funding for research, clinical trials, medical education and public awareness. I hope that we can reach that goal within the next few years, bringing increased understanding and insight into this life-changing illness.
If you could go back in time, what would you tell your newly diagnosed 14-year-old self now?
You are going to be okay. There are many challenges ahead, but you’re a strong young lady and you will get through it. You have your whole future ahead of you; focus on the positives and worry less about things beyond your control. You will learn about life far quicker than any of your school friends, and your bullies will become all but a distant memory. You will become a unique and independent woman, embracing an unconventional lifestyle, and using your experiences to help others. Remember to be more open with your loved ones; don’t ignore that voice inside you, as it’s always right; and never give up hope. Life is a precious thing, so just keep your head held high and don't ever stop smiling!
You have done amazing work with M.E. Support. I, for one, have learned so much about the illness through the website. Where would you like to see the website in the next few years?
I am very proud of what I’ve achieved here, but more importantly, I’m glad to have helped you and so many others. When I was diagnosed in 1993, the facts weren’t readily available like they are today, although we’re now at risk of information overload! I am thankful for the encouragement to launch a website, as it's enabled me to create a focal place for those touched by M.E. I try to bring together relevant information, whilst highlighting the latest news and research, along with providing a platform for people to share their experiences. It has certainly been a learning curve, from teaching myself web development to expanding my knowledge on health and diseases. The workload tests my stamina and abilities; however, my role here is incredibly important and fulfilling.
There is a growing need for information and guidance on Myalgic Encephalomyelitis, therefore M.E. Support must continue to evolve in order to keep up with demand. I am lucky to have been joined by you and the other volunteers, for which I’m tremendously grateful, but our work needs wider recognition and additional financial support. I am planning to write an e-book for M.E. Support, describing my experiences in more detail and providing additional information to the website, which will hopefully shed new light on this cause. This is very much a community site, for which I see myself as a mere custodian, and I hope it will be here for many decades to come.
This illness comes along with a lot of challenges and personal changes. How do you feel this illness has changed you as a person? What was your biggest challenge with this illness so far?
I didn’t have the enriching experiences that other teenagers go through in order to develop. Whilst they were being educated, forming friendships, going on dates and getting their first jobs, I was bedridden, having been thrown into an alien world. This has unsurprisingly affected my personality and confidence in adulthood. I also had to grow up quickly, which on one hand has given me great strength, although it’s also taken a certain sparkle out of my eyes. However, it’s provided me with invaluable experience and an extraordinary perspective, deepening my compassion and empathy for others, and enabling me to appreciate what’s truly important in life.
The psychological impact of physical illness is immense. The distress of managing this condition, and accepting the effects it has on my life, is a constant battle. Living with M.E. has been, at times, harder than having M.E. As described in M.E. My Story, four years after being diagnosed I decided this life wasn’t worth living. Becoming a suicide attempt survivor was more difficult than anything I’d experienced before. The breakthrough came when I faced my inner demons and created changes in order to take responsibility for my wellbeing. I still have challenging moments, but I seem to have a more relaxed outlook now; whatever will be, will be, c'est la vie!
What would be your own personal top five tips be for anyone who is newly diagnosed with this illness?
- Knowledge is power, so learn as much as you can about M.E. The M.E. Information section is a great place to start and will point you in the right direction.
- Do not be afraid to accept your illness, as it doesn’t mean giving up! Acceptance will give you courage, better judgement and strength.
- Listen to and understand your own body. Respond to the signals and respect your limitations.
- Take one day at a time whilst valuing your achievements, no matter how small they might be.
- I cannot stress the importance of talking to other sufferers for help and support. Join one of the M.E. Organisations and contact your local support group.
You have achieved so much despite being so ill. What was the thing that got you through the hardest of times?
I have got myself though those difficult times! That might sound self-centred, but without my resilience I wouldn’t be here talking to you today. I am not one for regrets, as experiences make you who you are, and surviving my challenges has made me a better person. They say that your darkest hour comes before your dawn, and I didn’t truly find myself until I reached rock bottom. My life certainly isn’t what I dreamed of, although it’s made me appreciate my achievements all the more. It is incredibly important to have faith and believe in yourself.
“Accept what is, let go of what was, and have faith in what will be.”
How do you like to spend your time away from M.E. Support?
A large proportion of my time is obviously spent resting, which isn’t exactly what I like, although there are ways to make it more bearable. I grew up in the countryside and was lucky to have that peaceful, relaxing environment during my early years with M.E. I now share an apartment with my mum in a quiet town on the south coast, and love nothing more than dozing off to the sound of gentle waves receding over pebbles. I adore watching things grow and bloom; we have a variety of houseplants, along with a flourishing balcony garden, and you’ll always find a vase of fresh flowers on display. I enjoy crime fiction (paperbacks and audiobooks), working my way through The Sunday Telegraph, or lusting over the latest copy of Vogue! I love films, especially black and white classics, along with television documentaries and dramas. My pride and joy is a Wurlitzer jukebox, which has an eclectic mix of rock, blues, jazz, soul and classical music. I can spend days, weeks or months housebound, so these little pleasures really do make a huge difference.
Most of my time online is spent working on M.E. Support, so it’s important to switch the laptop off and enjoy some ‘me’ time. I adore walking when able, or just breathing in the fresh air from the comfort of my wheelchair. The promenade is the perfect place for me; I can take a short stroll to one of the beachfront cafés and watch the world go by. I look forward to spending time out with my brother Stuart, even if it’s just a drive though the countryside in his sports car. I have shared interests with my dad and value any time we’re able to spend together. I don’t get to see my friends as much as I’d like, so catching up over lunch is always a real treat. I enjoy looking around small local events or visiting beautiful historic places. I occasionally manage to get away for a few days, which is always a real boost, even if it does take weeks to recover! Photography is a great passion of mine, so I get such pleasure in capturing these moments, sharing the photos with loved ones and occasionally exhibiting them.
What are your hopes for the future?
My parents worked hard to improve their lifestyles, and I always valued everything they provided me with as a child. They supported me well into adulthood and this has made me appreciate things even more. I do wonder where the road would’ve taken me had I not become ill, although I’ve never had any grand plans. I adore my little indulgences, but I like a simple life and have ordinary hopes for the future. It would be lovely to have my own home one day, with a little garden that I could turn into a relaxing oasis, and using my skills in some form of work to pay the bills. In the not so distant future, I’d like to pass my driving test (I’ve taken lessons over the years but it’s been incredibly draining) as a car would give me more freedom. I would like to be well enough to socialise a little more, forming friendships and experiencing new things. I tend not to write much about matters of the heart, although I do love someone; it’s taken a lot of anguish to let my guard down, so only time will tell where that might lead. I haven’t been abroad for a long time, due to a combination of health and finances, so it would be wonderful to finally take a trip somewhere. I am an animal lover and would like my own pet for companionship, with the benefit of adding routine to my day. It is important to set yourself goals and make plans to improve your life.
Do you have a bucket list? What is on the top of the list to do?
I certainly do and everyone should have one! I have made a mental note; however, I pick a few things to do each year and jot them down in my diary. It might be something I’d like to own or a place I’ve always wanted to visit. Top of my list is the ultimate luxury trip: a journey on board the Belmond British Pullman and Venice Simplon-Orient-Express, with a brief stop in Venice, and then a Mediterranean cruise on Cunard's Queen Mary 2 ocean liner. Where there’s a will there's a way, as the saying goes!
If you were sent to a desert Island and could take only five things with you, what would you take?
I had best pack something practical first, like a wilderness survival kit. My sarong and wide-brimmed hat would give me the holiday vibe! I have always wanted to tackle the complete works of Shakespeare, and what better place to read than sitting under the shade of a palm tree? The thought of solitude appeals to me, although I’ll take a solar-powered radio for company, just in case Island Fever sets in! I will build a shelter, master the technique of opening a coconut, and switch from being a vegetarian to pescatarian. I have climbed the metaphorical mountain, so move over Bear Grylls – a desert island will be a breeze.
You are a big inspiration to a lot of M.E. sufferers and supporters out there, but who is your biggest inspiration?
My wonderful mother Lorraine quite simply means everything to me. This illness has taken things away from both of our lives, but despite that, it’s enriched our relationship and created a unique bond. Her strength is what gets me though each day, her determination provides me with faith for the future, and her loyalty gives me great courage. She wrote One Mother’s Story shortly after I launched M.E. Support, which I was honoured to publish, and it’s enabled her to help other parents of young M.E. sufferers. Mum is the constant in my ever changing life, and I love her with all my heart.
Never Give Up
by Charlie Remiggio
Never give up
Never lose hope.
Always have faith,
It allows you to cope.
Trying times will pass,
As they always do.
Just have patience,
Your dreams will come true.
So put on a smile,
You’ll live through your pain,
Know it will pass,
And strength you will gain.