There's no denying it, no getting away from it. At the end of the month I'm turning 30. The statement makes my heart sink and is accompanied with a sense of dread, a sickening at all that hasn't been and what may lie ahead. It's stupid really; things don't magically change because the clock strikes midnight at the end of one day and a new one begins. I'll still be me; I'll still be the same person. Not that much has changed, or has it? I think the real reason that "big" birthdays have such an impact on us is because it's like a pumped up version of New Year's Eve, a time to look back and reflect on the lives we have, the things we've done and more importantly the things we haven't done. The saying's true, there's very little I regret doing; but there is a lot of things I wished I'd done. So many that I still want to do; but right now just feel impossible. I think that sense of the impossible is made worse when it's illness or disability that's kept you from your dreams, an outside force that has taken over your life and changed who you are and who you wanted to become. We all have this mental check list, these things we want to do or think we "should" do by a certain age and as with New Year's Eve, we run through the list to see how we're doing. In my case it's a success/failure situation, which is far too black and white in reality; but it's hard not to do.
And so it goes on... everything I want, everything I think I want, everything I think I should: have, done or been by the age of 30 equated to a simple yes or no answer. Is it fair? No. Is it true? Yes; but only in the narrowest form possible. Where's the checklist for all the other things, the things that aren't considered milestones by society; but are huge when you're living with them.
They are all great; but they're also just achievements the things I've done; but what about the bigger things, the emotional stuff. The things that have really defined who I am as a person, that have made me stronger.
When I think of life in those terms, when I redefine what is important, what matters, what makes up a "life" I see the past thirty years as pretty epic, all the things I've been though, all the experiences - both good and bad - the ways I've changed and grown, how I've come into the person I am, it gives me a new sense of respect for myself and for everyone else who's been through similar situations. Maybe now's the time for us to start redefining what it is to live, what achievements should be counted as worthwhile, so that when we reach the big birthdays, or any birthdays for that matter we do so with joy and with awe at all we have coped with and respect and wonder at how pretty darn awesome each of us is! What would you put on your list of amazing things that you can be proud to check off at your next "big" birthday? Let me know. Image courtesy of digitalart / FreeDigitalPhotos.net Ten years ago I was really poorly, I'd been bed bound for three years with ME/CFS and I was struggling. There was little information around for people who were so ill, half the medical profession didn't know you could get that ill with ME, the other half didn't believe it even existed. I was frustrated and isolated and I knew that I wanted to do something about it. I decided I'd put together a leaflet of tips for people with severe ME and gather up all the things that worked for me and others with the chronic illness. It was a slow process; I couldn't physically read or write, I was just too ill. I had to dictate everything to my Mum, who was brilliant. Gradually we put it all together, over a couple of years. It expanded as we realised how much information we had to share, from a leaflet, to a small booklet, to realising it needed to become a whole book! It was incredible watching it come together and know that it was going to help people, make a difference. Finally in 2004 it was printed by a charity I was working with and they sent it out for free, to all their severely affected members. I was so proud of it and delighted at the positive reaction it got. There had been a huge gap and I'd filled it with a practical guide to living with ME. I heard back from sufferers, from doctors and OTS, specialists who were using it with their patients. The book had gone further than I ever imagined it could! Things changed, life moved on and I gradually got a bit better, leaving a lot of it behind as I explored new challenges. Now though, it feels like the right time to go back and update the book one last time. To add to it all the knowledge I've gained since the first publication and to bring it into the world again. Not just for people with ME/CFS; but for anyone that's living with a chronic illness, because I've met more people and realised that a lot of the themes and information are relevant to all kinds of illnesses. It feels very strange and emotional to look back on it. To revisit what was my own personal hell. I'm on the other side and that helps; but it does bring all the horror back. It feels important to do this, not just for the new people I know it can help; but for me too. There's a lot that happened during that time that I suppressed, because I was just too weak to deal with it; but now feels the time to bring it out into the light, to see it for what it is and to release it once and for all. Surviving Severe ME changed lives and I know that the new version Thriving not Surviving, LIVING life with chronic illness, is going to do even more. Image courtesy of marin / FreeDigitalPhotos.net The start of a new year always has so much pressure, so much expectation. It's as if putting up a new calendar is suddenly going to change everything, and that magically all the awful things from the previous year are going to vanish and you're going to discover all the things you've been searching for, just waiting for you in January. Maybe it's the build up of New Year's Eve, the bubbles of hope (and often alcohol) that lift your spirits. Not that I think that's bad, during the dark days in the Northern Hemisphere, you need something to look forward to. That's why I always do a Party in your Pad for New Year's Eve. This year we went to a virtual beach in Scotland and had a brilliant time sitting round the bonfire and sharing the night. Now though I feel a bit deflated, as if the start of the year hasn't lived up to the hype and I'm wondering what next. Surely something is going to change this year? An improvement in my health, a new exciting project, a step closer to all I'm dreaming of? I should be doing something to make that happen right? In truth I don't really know where to start, so I'm taking baby steps, finding the things that are niggling at me and working out if there's anything I can do. Top of my list is energy - mainly lack thereof. So I'm starting 2013 with the aim to drink more water and see if there are any foods I can eat that will give me a boost. As for new projects I've been itching to update a book I wrote about ten years ago for people with chronic illness. It feels like the right time to get it out and bring it up to date with all my recent experiences and then send it out into the world. Its equal measures exciting and terrifying; but again baby steps - I'm just focusing on the update for now. How about you? Are there things in your life that are niggling? That you want to change? Maybe you can't change them overnight, or some things at all; but are there things you think might make life easier or will provide a distraction - I'm definitely in favour of if you can't change it, ignore it and have fun doing something else. I know how difficult December can be. The hustle and bustle of the festive season, the talk of dressing up, going out, being part of the crowd. It's all very exciting if you can actually go out, join in, be a part of the group. What do you do if you can't though? If you're at home, in your PJs, sat in front of the TV, or curled up with a book. For most of the year this feels okay, fun even; but when the world is living and you feel like you're not, that's when it gets hard. That's when you want to cry for the unfairness of life, when you want to scream at a body that won't do what you want and a world that doesn't know how to help or make things better. I wish there was a magic solution, how I wish there was, for you, for me, for all my friends. A wand to wave to correct it, or a lamp to rub for wishes; but there's not, or at least I haven't found it yet. There are years I have curled up and barely been aware that it was December, let alone Christmas. Times when I was so ill, that I slept straight through the 25th and not even cared. Then there have been years where the ache in my heart and being left out made me feel sick and sad. How you cope with this may be completely different to the way I cope with it; but I've found that the best way for me is distraction. I don't want to ignore the season, I'd feel like I was missing out, have more things denied to me by my illness, so I adapt. I find things I can do, from where I am, right now, in this space. Fun, quirky, happy things that I love to do, just given a twist, some sparkle and a dash of excitement. That's why I'm organising my own Christmas/Relevant Festive Occasion Party, one that I don't have to go out to, that I don't even have to change out of my PJs for; but one that has fun, easy, adaptable things I can do within my own health and energy limits. I'd like to think I've thought of everything, the theme, the music, the food and drinks, the guest list. It's planning a real party; but one that is constricted by distance, time or space. My party can be attended by people all over the world. The guest list is already three figures and growing! I'd like you to join me. If you're feeling left out or you just want even more fun this month. If you've never been to a virtual party before, or if you're a regular who loves making new friends and connecting with old ones, then I extend this invitation to you. We are going to have the best time; I know it's going to be so much fun because I'm already getting tingles! Can you feel them too? I feel hope and joy, things that can be hard to experience when life is tough; but why should we be denied them? Other people aren't. We may have to adapt, alter, adjust; but we are as entitled to fun and joy as anyone else. So join me for the fabulous Diamonds & Ice Party in your Pad - go now and get your name on the guest list! It's going to be an event to remember. Last night I was thinking about self worth, mainly because I've been reading Louise Hay's You Can Heal Your Life. The affirmation for ME is the same for Epstein Barr - "I relax and recognise my self-worth. I am good enough. Life is easy and joyful." Just reading it for the first time made me feel better, it definitely resonated with me; but it has made me think about what self-worth is. I have always defined my self-worth by the things I achieve, the people I help and I've felt that I have to be doing something of value to feel like I personally have a value. I think this is made stronger because of my illness. Society views anyone with a disability or illness as less than: less useful, less valuable, less important, just less. It can be hard to hold your head up and feel worthwhile when the messages around you make you feel like you are a burden, a responsibility, a sponge, taking away from the whole, not giving anything back. I don't agree with that in the least, the things I've seen disabled people do to help others is awe-inspiring, especially when they have to overcome so many more hurdles than most people do; but it shouldn't be just those that are visably seen to be doing things, who are considered to have worth. I started to think of my own self-worth, if I took away all the things I "do" and concentrated on all the things that I "am", the things that exist if I'm writing an article, watching television or resting in bed. I have to admit that it's a concept that felt very new to me. To recognise that I have worth at all these times and it has nothing to do with my achievements. I am still figuring out what self-worth means to me - I believe it to be the inner core, my personality, my strengths, for example my determination, my will to survive, my creativity and my way of coping when life brings me down. It's my belief there is good in the world and my desire to care for people and share the joy in life that I have discovered and want to bring to others. It's this and so much more that I'm yet to be able to put into words; but at least now I'm thinking about it. I am repeating the mantra throughout the day and each time I say it, out loud or in my head it makes me stop and think. I may not be physically perfect, I may not be like everybody else and I may not be doing as much throughout the day as everybody else; but I have worth, I have value and just because society doesn't recognise it, doesn't mean that I shouldn't. In fact I think it's about time I start. What does self-worth mean to you? Do you value yourself? How do you cope with the constant undermining of your value by society and the media? I'd love to know your thoughts.
Last year I heard of a really insane sounding project called NaNoWriMo, which stands for National Novel Writing Month. The basic idea is that during the month of November, people from all over the world sit down and write the novel they have always wanted to write. It was something I had on my wish list - write a book, which I had always wanted to do; but had never found the time or the motivation to actually get down to. The challenge is to write 50,000 words in 30 days which sounds completely mad and impossible; but every year hundreds of thousands of people attempt the challenge and lots of them are successful! Some even get their books published - for example The Night Circus by Erin Morgenstern which we just read for the Live in Love in Laugh in book club. (Amazing book, a must read - we all agreed!) I know that a lot of my readers won't have the energy to write 50,000 words, but that's ok read on... I found out that you have to write 1,667 words a day to complete the challenge and I thought I could manage that, or at least have a go. I'd been doing a daily blog, so it didn't seem too much of a stretch. When I started I wasn't sure what to expect, I hadn't written anything creative since I left school, that is other than my virtual holidays from home; but they are factual with an imaginative twist, not a story. This was something completely new to me! I had been making up stories in my head since I was bedbound; I found it a great way to escape the boredom and frustration; but I'd never written them down and this was now my goal. The question was where to start? I had an idea for a story and set out with a huge amount of fear and trepidation - could I write? Was it even possible to have that many words inside me? Turns out there were a whole lot more than 50,000. I ended up doing two novels during November, writing a total of 104,000 words! I know I was totally shocked; but the truth was I loved every minute of it. It taught me a lot about working through blocks, keeping going and not giving up. I would really recommend it to anyone that has always dreamed of writing a book; but doesn't know where to start. Fancy joining me this year? We can be writing buddies - you just sign up here... It's free to take part and you get a snazzy badge like the one at the top to say you're taking part and another one if you finish! My goal this year is to just do one novel; but to go back and edit it, then send it to an agent. My ambition is to be a published, best-selling fiction author and it's time to make that happen. So for anyone that wants to write; but can't manage 50,000 words - it is a challenge, I have to work harder at my pacing so that I can do it; but I find it's worth it as I feel so much better in myself when I write. Instead of normal NaNo I want to extend an invitation - let's have a go at writing 5,000 words in a month - that's a short-ish story; but is definitely do-able. It works out at 167 words a day, far less than a third of this blog post! If we all write a story then I will put them together into a free e-book you can distribute to your family and friends - it would make a great Christmas/Non-holiday specific gift and you get the pleasure in calling yourself a published author. Leave me a comment to let me know if you fancy having a go or drop me an email. I can't wait, I know it's going to be so much fun! Hurry up November! 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. I recently got in touch with Disability Sanctuary, who have a great website for people with all kinds of disabilities and illnesses. It's a great mix of facts, blogs and community. I wondered if they might be interested in a guest blog post, something I've wanted to do; but not really known where to start - I was also a little bit nervous about putting myself out there; but since I've resolved to make mroe connections and be brave about telling people about Live in Love in Laugh in, I decided it was time to go for it.
They were happy for me to write something and looking through their site I saw that they had some brilliant fact sheets, including one on ME which I can obviously relate to. I thought they might like one on being housebound or homebound. I did some research and discovered that there is actually very little coverage on what it's live to be unable to go out which surprised me. I realised that my years of experience of being bed and house bound could be put to some use so I put together this Housebound or Homebound Facts - you can read it here... http://www.disabilitysanctuary.com/housebound-or-homebound/ 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. |
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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