Surviving Severe M.E.
by Claire Wade
Hi, my name's Claire Wade and I've had M.E. for twenty years. During that time, I've been through the ups and downs of living with this awful illness: the crazy symptoms, the awful fatigue, the people who didn't believe, battles with teachers, doctors and hospitals, losing people I loved because they just didn't understand or they couldn't cope with my illness. It's been a long and painful road; but throughout my experiences I've been determined to live my life, to make the best of what I could do, even when I was 0% ability and bedbound. My driving force has always been to focus on helping others and somehow it always seems to help me too.
I first became ill in 1993 at the age of ten. Like so many M.E. sufferers I came down with a glandular fever-type virus and never recovered. It was very sudden and a real shock. I visited a long line of GPs and specialists, having tests and treatments - nothing helped. I even went down the alternative route, but with no success. My health kept getting worse until I became bedbound at sixteen, just after sitting my GCSEs. It was terrifying - my whole life had changed and now all I could do was watch as my school friends went on to do A Levels while I was too ill to be able to read or even watch television.
Barely able to move or speak, sensitive to light, sound, smell, touch and taste, my body was suddenly a prison that I couldn't escape. The doctors didn't understand and there was very little information available on how to cope with this horrific condition.
That was when I decided that if the information wasn't available I would put together my own, despite the fact that I was too ill to read or write! I recruited my Mum who was my full-time carer, and she became my PA too. We contacted all my pen-pals who also had severe M.E. and asked for their best tips and advice. Slowly we put together Surviving Severe M.E., with me dictating it all to my Mum and my brother typing it up. It was meant to be just a few leaflets, but it turned into a whole book!
It was printed by an M.E. charity and sent out to all its severely affected members. It was such a good feeling knowing that my own experiences were being used to help others, I felt like my life wasn't completely pointless and wasted.
I've turned the book into a free website because I wanted the information to be easily accessible to people across the world.
I was bedbound for six years and during that time I struggled with the fact that I was missing out on so much. The world was carrying on without me and I was trapped at home: alone, isolated and frustrated. I had pen-pals, but I wanted to do more than just write to them - it was before Facebook; but even now I want a whole social life not just a brief chat and liking pictures online. In fact, I sometimes find that the hardest thing of all - seeing how everyone else is doing, what they're up to, when all I've done that day is sit on the sofa in my pyjamas. It makes everything feel worse.
Holiday photos are the worst! And when I found out my family were going on holiday without me I was devastated. Travel had always been my big dream, but I couldn't get out of bed, let alone on a plane!
The thought "Why can't I go on holiday?" kept going around and around in my head, which made me feel very angry and sad. Slowly though, the question shifted to "Why can't I go on holiday?". A very subtle shift; but it made me think about ways I might be able to have a holiday without actually leaving home. I decided that if I couldn't travel literally, I would travel using my imagination. It sounds surreal, but it was so much better than spending the time crying.
My Mum and I put together a holiday to Greece, a place I had always wanted to visit. She got books out from the library and put the pictures up around my room, so I could look at them while I lay in bed. We ate feta cheese, olives and Greek yoghurt, made mosaics out of coloured paper, participated in the traditional Greek folk custom of plate throwing (paper plates – much safer than hurling real china) and paddled in the Aegean, also known as a foot spa. It was so much fun trying to find ways to bring the holiday into our home. We certainly laughed a lot and it was much better than just lying waiting for my family to get back.
Having so much fun on the holiday showed me there were ways to enjoy life despite being ill. So I started organising my own online “parties in my pad” for New Year’s Eve, my birthday, Valentine’s Day and Christmas. I linked up with my friends on the internet and they had such a great time too. It was fantastic to be able to break the isolation, have fun things to look forward to and not feel like the world was passing me by.
I realised that there were so many people in the world who also couldn't live the life they wanted, that they felt trapped and isolated and they just wanted to be able to enjoy life. I wanted to find a way to give them a social life without going out. That's why I created Virtual Adventures – we have parties in your pad, virtual vacations and holidays from home, all from the comfort of your bed or sofa, and you get to make friends with others in the same position.
People always ask me what a virtual experience is – it's like a guided meditation, but instead of just going to a beach or a woodland, which frankly I find a bit boring, with my virtual experiences you go on adventures to amazing places like ice hotels, swimming with dolphins, sailing with pirates and even back in time to a 1930s vintage party.
The experiences come as special audio MP3s or e-magazine, which you can download for free. This makes them really easy to access and enjoy on a computer, laptop, notebook or smartphone. There's a combination of things to listen to or read and lots of activities to do, because who wants to just imagine doing things when there are fun ways to do them yourself? It's all adaptable, low-energy, easy to do on your own or with the help of a carer, and most importantly, it's designed for pacing – such a huge part of life with M.E.
Through being ill I've realised that there are lots of things you can't change, so it's important to focus on the things you can – to distract yourself from harsh reality, while creating the best life possible. Being able to relax and enjoy them has helped me more than any medication or treatment, and seeing how much fun others have with my virtual experiences is incredibly rewarding. My goal is to live life and have fun, and to help others do the same.
When I was really poorly, before the virtual holidays, I used to write stories in my head. It was the best form of escapism I could manage. I always wanted to write them down but at the time I was too ill, so it was a someday goal.
Over the past few years I decided that it was time to try writing my stories. It’s been a slow process (seven years), but I managed to finally finish writing my novel The Choice. It’s about a world where sugar is illegal and baking is a crime.
I won the Good Housekeeping Novel Competition in 2018 and the prize was a publishing deal with Orion. I still can’t believe it. It’s been a lot of work and pacing, but it’s an absolute dream come true. You can read more about it at ClaireWade.com and it’s available on Amazon.
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Are you sick and tired?
Fed up with feeling ill and really need a break?
No problem... Grab your virtual passport and get ready to be whisked away on a fabulous virtual adventure. Set sail aboard your own private, luxury yacht. Relax in your five-star accommodation as you explore the vast ocean. Receive your exclusive, free virtual day trip audio and e-magazine at Surviving Severe ME.
Your Virtual Holiday Awaits You...