Tomorrow I'm recording an interview for a local radio station on ME/CFS and I'm really nervous. I've done interviews before, I've talked about my ME before; but I'm feeling a real sense of resposibility doing this particular interview. I was asked to do it by the presenter after I did an interview on Live in Love in Laugh in and Holidays From Home earlier in the year. I really enjoyed the experience and agreed because I want to be able to help raise the profile of what it's really like to live with ME/CFS.
I don't consider myself an expert on ME in general, all I can speak about is my own personal journey with the illness over the past twenty years. I know that ME affects everyone so incredibly differently, I think that's one of the reasons it's so hard to understand and diagnose. If only it was simpler, it would make life better for everyone involved. If only... There is so much to say about ME, what it's like, how hard it is to live with - I've only got a thrity minute interview; but I'm going to do my best to cover as much as possible and hope that I do it justice. If I can help a few people who are listening, either cope with their own illness or understand somebody else's then it will all be worth it. Wish me luck! I became ill at ten years old, back in 1993, nearly two decades ago. I come down with a mystery virus, saw lots of doctors, went for lots of blood tests and was told there's nothing wrong with me. I was continually asked do I like school? Am I being bullied? The answer to that was I loved school and had lots of friends, it made no sense for me to "pretend" to be ill. I was missing out on so much and hated it. All I wanted was to be well.
Nobody understood except for my Mum. Family, friends and my school didn't understand why I couldn't "just" do things, like go to school, go out, do the things that everyone else my age was doing. They implied I was being lazy and difficult. It hurt so very much, their silent criticism, how easily they forgot who I really was, who I used to be. The happy, bubbly, outgoing little girl. I spent two years not knowing why I was so ill, being made to feel like I was making it up or pretending, until eventually my family found a specialist who I saw privately. Finally I got a diagnosis of ME. We found support groups and other sufferers and realised we weren't alone, other people were going through the exact same thing. We had to fight to educate everybody around me, including the doctors, to teach them about my illness, my symptoms and the things I could and couldn't do. We became the experts and we had to fight against this stupid stigma that it was an illness that was all in the mind. I believed that twenty years on things would be getting better; but I'm furious and devastated that they aren't. This morning I heard of a little girl who had just been diagnosed with ME and her experience is exactly like mine was. No diagnosis, doctor's didn't believe or understand, no tests, no treatments, no support from the school. It makes me so angry and so very sad that in twenty years things are still the same. When are things going to change, because it really is about time it did. People are suffering and until the health service starts to take it seriously and puts real money into bio-medical research, then millions of people around the world are going to have to deal with the same horrific situations. This isn't Ground-hog Day, this is people's lives. Does this sound familiar?
If this is you then you're why I do what I do and why I set up Live in Love in Laugh in. I know exactly how you feel, because I feel like it too and I'm doing all I can to stop feeling like this and help you stop feeling like it too. I know how horrible it is and I wish I had a magic wand for you, me and everyone out there who has to live like that. Until I find that wand, I want to create something to lessen the pain, to distract you from the harsh reality of everyday and give you something fun to enjoy and look forward to. See how I'm doing that with Live in Love in Laugh in here... My post yesterday has made me think about everything I'm doing, especially how I'm actually going to get my message out into the world. I feel overwhelmed by how much there is to do; but when I examined that closer I realised that beneath the overwhelm is a huge amount of frustration because I know what I need to do; but because of the ME/CFS severely limiting my time and energy it means that I can only do a fraction of the things I want to in a day.
How do you decide what you spend your time on? How do you prioritise when so much feels like it needs to be done now and so many tasks are tied together - I can spend all my time creating my virtual parties and holidays; but if I'm not marketing nobody will know to be able to enjoy them. I can spend time promoting; but then I need content too. I also enjoy the things I'm doing and don't like to stop when I feel the fatigue and aches kick in. I want to keep going because I'm having fun, I don't like my body dictating how much I can do, when I don't feel like I'm doing anything that intense. Running a marathon - that's exhausting! Sitting in front of a computer, that shouldn't leave me exhausted. I've been watching the closing ceremony of the Paralympics and have been amazed at the incredible achievments - I get scared going up a curb in my wheelchair, so seeing what others do is breath-taking. The question that came up for me is, why can I look completely healthy and "normal" yet I can't even get to the stadium, let alone do anything remotely sporty. How can an invisible illness limit me in so many ways when there are visible illnesses that still allow people to do Herculean tasks? People tell me that no matter how well I might/will be, there will always be frustrations over how much I can fit into a day. "Even healthy people can't do it all." I find it rather annoying when they say that - I know it's true; but I also feel like I don't get my fair share of the day because so much of it is taken up with resting and sleeping. I'd love to be able to work for longer than a few hours in the morning, because I love what I do; but I physically can't and that sucks. I know there are other people out there running businesses and juggling other things like full time jobs and families; but those are things they chose, I didn't choose to be ill and I just know I could achieve so much more if it was well and full of energy, with the same abilities and number of hours in the day, that's all I want and I don't think that should be too much to ask for. This post isn't meant to be a poor me, life is so tough post. I know that compared to where I was ten years ago, unable to concentrate to read or listen to music, let alone write or use a computer, now I'm doing so well. I just wish I could do more. It's made me realise that like with everything else I'm going to have to adapt the whole marketing game to meet my needs, adapt it to fit what I can do right now and trust that it's enough. That's hard to do when the business world is constantly saying you have to do things a certain way to be successfull, that you must be working every hour of the day to achieve your goals, that anything less than all you have just isn't enough. As with everything in my life so far, I'm going to find my own path, follow my heart and trust that it's going to lead me to where I'm meant to be. What are your experiences of doing things differently because you have to rather than because you want to? I'd love to hear how you cope with the emotions that brings up. I'm off to bed, ready to start the week on my terms. For someone who has had to learn to listen to her body, I think in some ways I'm quite out of touch with how it feels. It makes sense, when my pain levels were so high that pain killers stopped working, when I was hurting so badly I thought I might be sick, then the only way I found to cope was to distance myself from the pain and the aching, to separate myself from the body that contained and trapped me. The problem is it means I spend most of my life in my head, thinking, thinking, thinking; but very little time actually feeling my body, being aware of my limbs, especially my legs, where I end and the world begins. Today for the first time in a very long time I actually tuned in to my body, as it is now, without the fear of the pain or aches and I did this during a Nia class that my friend, Anne Francis, invited me to. Nia stands for neuromuscular integrative action and that was about all I knew when Mum and I went along today to Anne's Seated and Adapted class. I wasn't sure what to expect; but I guessed it would be some sort of yoga, stretching type class. I was both right and wrong. I guessed things were going to be a bit different when Anne wheeled in a big speaker, plugged her phone in and started blasting out a funky song with a catchy, fast beat - not relaxation music at all, no wailing whales or chanting monks in site! I find that when I listen to music I begin to move naturally anyway - not dance, let me be clear I don't think I can dance, it's more of a getting caught up in the feeling and flow, not something I would ever want anyone else to see; but it feels good to me. I guessed that the class was going to be fun and I was disappointed! We sat in a circle, on chairs - no creaking and groaning trying to get on and off the floor for us! Shoes off, bare feet on the ground, Mum and I sat glancing at each other wondering what would come next. We didn't have to wait long, Anne began to lead the class and we followed her instructions which were so simple and easy to copy a child could do it - actually a child might be a little more coordinated than we were; but it wasn't difficult and as Anne says "You can't do it wrong, every person is unique and the way we do Nia is too, so celebrate the uniqueness." I think the best move was picking fruit behind you, a simple spinal twist; but it was elegant and graceful, no stretching, pushing or over-extending. It just felt easy and effortless. Once you relaxed, forgetting about other people or what you looked like and let go it was fun, I know that I was smiling a lot and laughing when I didn't do quite what I thought I was meant to. The pace picked up and I could feel my body working; but I soon realised I could slow it down and adapt it to my own abilities. I loved the part when I was closing my eyes and just letting my body move to the music, gradually working everything from one ankle upwards and then back down again. I suddenly was tuning in to parts of me I take for granted on a daily basis, sensing the tension, the stiffness, the release. It wasn't frightening or painful, it was like an awakening. There were areas that ached or felt tender and for those I changed what I was doing, reduced the movement or stopped altogether; but that was the joy of Nia over other exercises, where you feel you have to do exactly what everyone else does to keep up. For this you could do your own thing and enjoy it. My absolute favourite bit was the relaxation at the end, relaxing into my body, feeling my breath - an extension of the meditation I do daily; but it was lovely and I came out feeling incredibly chilled, my body all floppy and zen-ed out! So relaxed in fact I came home and slept for three hours, which was bliss and I still feel very calm and chilled now. I had a great time and I'm looking forward to going back. To read more about Nia go here... To find out more about Anne's classes in Norfolk go here... To find out a bit more about me and what I do go here... Image: FreeDigitalPhotos.net For me, happiness always looked a certain way - it was me, healthy, busy, in a relationship with a good man for me, married or at least engaged, with a successful career, a good income, in my own house, with a great social life, a big group of friends and a few best friends. Fairly standard really, nothing out of the ordinary and it didn't feel like I was asking for too much - I mean that's what most people have, right?
For a long time I've thought that I wouldn't or couldn't be happy until I achieved all of those things - not just a couple; but every single thing on the "happiness list". I even had a mental check-list in my head to cross things off. I wasn't doing very well with it though. Still living at home, a long way from healthy, relationship? Well that would involve me being able to actually meet anyone, plus how could I expect somebody to deal with my health limitations, hardly seemed fair. Friendships - tick; but I'm not able to see them much - especially the ones who live on the other side of the country or even the world. The only thing I knew I'd found was my passion - you're looking at it - helping people who feel stuck, just like me, and who want more from life. It was the only thing in my life I was really sure of and it has brought me happiness; but I thought that didn't count because there were so many other areas in my life that I wasn't happy about. Surely the negatives out-weigh the positives and then make it a negative too? The frustration has to overwhelm the joy, right? Sometimes it did, sometimes it didn't; but either way the aching lack of the things I wanted, made happiness seem impossible. Then a few weeks ago I read a book which was saying that the happiness millionaires experience is no different to the happiness that you or I feel when we're doing something we love. There's only one type of joy and if you feel it, it's real and important. That struck such a chord with me, this sudden realisation that I could be healthy, I could be rich, I could be a million different things; but the moments when I feel the world light up around me, when I'm watching my favourite TV show, I'm eating a piece of cake, preferably chocolate, I'm playing solitaire on the computer (yes I know all these fancy new games and my favourite is still solitaire), when my favourite song comes on the radio or I'm lost in a good book - those moments of happiness are real and true. That joy couldn't get any better, in that moment I couldn't be any happier. It was such a huge realisation for me! Of course that doesn't change the fact that there are still lots of things in my life I wish I could change; but I realised that I don't have to wait for them to be different for me to acknowledge happiness. I never really understood the saying "Happiness is a journey, not a destination". I mean theoretically I understood it; but I didn't "get" it. Now I do. Now it makes sense. I'm not happy 100% of the time, I'm not even sure how much of the time I am truly happy; but I am starting to recognise it more and know that it is real and that I want to appreciate it. To be aware so that I can see it when it happens again and it's like I'm becoming more attuned to it, so that I know what happiness feels like for me, it even seems to be happening more, or at least I can "see" it when it does happen. The vision of what I want my life to be like still exists in my head, it's still the place I desperately want to get to; but until it does happen (if/when) then I'm going to enjoy happiness wherever I find it. Where do you find happiness? What makes you smile? Are you aware of it when it happens? I'd love to hear your experiences. This has been one of the most exciting weeks of my life, I've gone from idea to new website in a week and that's because the idea for Live in Love in Laugh in literally came into my mind almost fully formed. I've wanted to get it all together and out into the real world, so that it can start making a difference and supporting people like me who are stuck at home and want more from life than daytime TV; but often wonder how they can get it.
Live in Love in Laugh in is a new community set up to bring people together and help fill their calendar full of things to look forward to including parties, holidays and trips; but all without ever leaving home! Perfect if you're housebound or are unable to go out much, for whatever reason. I've been house bound and bed bound for a lot of years and I know how boring it is, so this is me using my frustrations to find a solution, the best one I can get! I sometimes wonder why I bother with my big dreams and crazy plans, they can seem insane. Why not just stay in bed, watch TV and read - it sounds like fun, for about a day; but I know I want more from life. I don't want my days to blur together; I want to create events, full of fun and joy. Memories that will last forever, so that I can look back on my year and know that I have lived the best I possibly can right now. I don't want to fade into my illness, to just be an ill young woman who could have been someone. I want to be someone now and I want to live now! I'd love it if you'd like to join me. Find out how here... |
Claire WadeI'm an author, disability activist, winner of the Good Housekeeping First Novel Competition and The EABA for Fiction 2020 and founder of Authors with Disabilities and Chronic Illnesses (ADCI). The Choice is available from:DETAILS:
Title: The Choice Publisher: Orion ISBN: 1409187748 You can keep up to date with all my latest blog posts by signing up to my email newsletter.
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