I recently received an email from someone asking how I stayed positive despite living with a chronic illness. I thought I'd share my response in case it helped others. The truth is it's not easy. I do get down and really frustrated. It's normally triggered by hearing what other people are doing, comparing my life with theirs and wanting more. I have such BIG DREAMS and I want them NOW!!! Right now. Not in a year or two (or three, or four). It's very hard to be patient. I am not a patient person. There are days I want to scream, to shout and maybe kick something if only I had the energy. Those days I just try to weather the storm, not try to be smiley-smiley, Pollyanna; but I hate feeling like that so I've found the best way for me to cope is... Distraction. Distraction. Distraction. I try not to give myself too much time to think about the bad things. Instead I focus on what I can do. Even if it's something teeny, tiny. When I was very poorly it was sticking one sticker on a card. Now it's editing a hundred words of my novel. Or writing a short blog post. I find it helps to have something I can see at the end of the day, physical proof of my achievements and progress. Browsing Facebook or watching TV doesn't help me when I'm feeling down, it's like time and energy gets swallowed up with nothing to show for it. I need to have a project to concentrate on, something I can think about when I can't actually work on it. I can plan my novel out in my head, or workout what changes I need to make to my website for when I do have the time and energy. How do I decide what to do? You have to choose something you enjoy; but you need to be able to break it down into smaller stages. That way you can do a little and then go back to it another day. That can be really hard when you're already feeling frustrated. You want to do it all. Get. It. Done. At least I do; but there are some things that nobody can do in a day, no matter how much time or energy they have - that's what I tell myself when I've only edited one paragraph and I feel the weight of all I still want to do and achieve. Help someone else. If you can't help yourself, sometimes helping people in a similar situation can be almost as good. I set up survivingsevereme.com and easytoswallow.co.uk for that very reason. I used all my awful experiences of being ill to help others and in doing so I found it much easier to cope. It felt like my time and suffering wasn't wasted. It really is one day at a time... It's not the answer you or I want to hear; but it really is a day by day process. Not looking any further into the future than this day, this hour, even this minute. It's the best, and maybe hardest, way to cope with limitations.
What one thing could you do today that would be fun and feel like an achievement? Focus on that, no matter how small it is. Concentrate on that and let tomorrow take care of itself. How do you stay positive or cope with having limited energy? What one thing are you going to do today? Pop on over to Facebook and let me know... I love presents, giving them, receiving them, there's something really exciting about unwrapping a gift. I thought buying presents was easy. Then I got ill and suddenly it was this whole minefield that no-one seemed to know how to cross. I'm the first to admit when I was bedbound I was a complete nightmare to buy for. I was sensitive to smell, so cosmetics were out. I was too ill to watch TV, read or listen to music, so that was a non-starter. I couldn't go out and it was in the days before online shopping. So what did I end up with one Christmas? That's right, high street vouchers I couldn't go out and spend, bath products that I could smell through the wrapping paper and a writing set when I couldn't even hold a pen. Total. Utter. Nightmare. There's nothing that makes you feel quite so rubbish as being reminded of all the things you can't do. Especially at Christmas! I have to admit there were a few tears that year which is why I wrote a post on The Do's and Don'ts of buying presents for people who are ill I hope it helps you find the perfect gift for your loved ones this year or maybe you could point a few people in that direction (a share on Facebook or an accidental e-mail forward works wonders) to give them a few suggestions for future present buying. I hope it helps you find the perfect gift for your loved ones this year or maybe you could point a few people in that direction (a share on Facebook or an accidental e-mail forward works wonders) to give them a few suggestions for future present buying. Buying a present for somebody should be fun and easy, and it can be, but when you are buying for someone who is ill or disabled, it can get much more difficult. Especially if the person you are buying for is bed or house bound. Suddenly there are more restrictions, there are things they can and can't do and you might not even realise it. Ill people are very good at glossing over what life is really like, pretending that they're as normal as possible. Trust me I know! I've had ME/Chronic Fatigue Syndrome for twenty years, I was bed bound for six of those and I never really told people how bad things were at the time. Honestly it felt embarrassing to say that I was so ill I couldn't even unwrap my own presents. Or that I was too poorly to listen to music, read or watch television - I mean seriously who can't do that?! So I pretended I was fine and then got frustrated and upset when people bought me presents that I couldn't use. I knew that they were being given to me because somebody cared and that meant a lot but at times it also reinforced how different my life was to everyone else's and that was horribly painful. That's why it can be so difficult to buy for people who are ill or disabled but these are my top tips - My Do's and Don'ts of Buying Presents for People who are ill... I have always worked hard to distance myself from my illness, my disability. I've struggled to say to the world that no, my disabilities do not define me, they do not make me who I am; but honestly that's not true. I am who I am because of my disability. It has shaped me, formed me, moulded my body, left marks on my skin and it has had an even greater impact on the person inside. There's a strong stigma that being disabled makes you less - broken and unworthy. It's something shameful and embarrassing. That it should be hidden away from society for fear of upsetting people, making them feel uncomfortable. I shrink when I'm in my wheelchair, I slouch down, avoiding eye contact and heaven forbid I see someone I know! I hate that I do that. I hate that I allow it to make me feel small. I've felt that I have to make up for my illness, that I have to prove myself in other areas, that I am worthy and capable, that I deserve my place not just in society; but on the planet. That because I'm ill I have to do something great and good, so that people can see there's more to me than the chair, the illness, the space I take up. Over the past year I've noticed a shift inside myself, as the general view of disabled people in the media and public consciousness gets worse, as we are portrayed as liars, scroungers and cheats, drains on society, I have felt myself pushing back against this idea, this notion that we are less. It's made me realise the strength and sheer awesomeness of disabled people. Not just the ones who set up charities, run world changing organisation or are pioneering disability rights; but all the people who manage to get through each day and even ENJOY each day as best we can, who refuse to give up and disappear, the way it feels many would like us to. I admire the ones who are living, the best way they can, no matter how tough things get, how marginalised society is making them or how easy it would be to fade away. I'm proud to stand (or rather sit) with them, to number myself among those who have been dealt an awful hand in life; but who are who they are. We won't, and should never have to, apologise for who we are. We should hold our heads high because we go to hell and back every single day, we live through pain and torment that no one should have to know exists and we're still here. For every person that doubts us, every person who implies we're lazy or lying, you make us stronger. You push, we push back. Your ignorance makes us more determined to hold on just a little bit harder. We're facing the same challenges and discrimination that women and civil rights activists have faced in the past. They had to fight, to struggle to be accepted, to achieve the same rights as everyone else; but they achieved it. We will too. No sadly it's not a calendar of giants, although that would be cool. This is a really large calendar, perfect if you have vision problems and struggle with the teensy weensy boxes on normal calendars. Or maybe you just have very busy days and need lots of space to keep notes. I know there are lots of crazy smart online calendars now; but personally I'm a paper and pen kind of girl. Not only do I not trust that it won't lose all my important dates (sadly not romantic ones); but I like being able to flick between months really easily and not faff around with silly tabs. They are a pet peeve! I thought these calendars (http://www.giantcalendar.co.uk/) were a great idea, so I had to share them with you. I like the idea of using them to plan my projects, I bet you could decorate them with all sorts of sparkly things! If you know of a great product that you think I'd love, let me know. I'm always on the lookout for something new and shiny. N.B. It doesn't have to actually be shiny! 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 Or does it? Do we have to feel sad and lonely because we're house bound, bed bound, ill disabled or just single? This is my opinion.... P.S. Ignore the crazy eyes, it was the best thumbnail on offer! 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. 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.
Isn't it easy to get caught up in life and your daily routine? You get so used to all the things you have to do every day, the pacing, the resting, and the tasks that you have to get done just to live. Life becomes a job, a chore and fun things that you love get pushed to the bottom of your To Do list. I've been really bad at this in the past, I get so caught up in achieving things while still managing my health, that I forget it's okay to take time to just have fun. I end up feeling frustrated and overwhelmed, desperate for a break, for things to change; but I forget that I'm the one with the power to do something about that. I can't magically get better or change my circumstances; but I can give myself permission to do some of the things I enjoy - like having a read in the middle of the day, sitting down with a mug of tea and watching a film, or even having some chocolate without feeling guilty! What do you wish you could do right now? What's stopping you? Is there a way you can break it down into smaller steps so you can enjoy a little part of it now or work towards being able to do it? The really funny thing for me is that most of the things on my To Do list have been about putting together the Parties in your Pad, for Halloween and Bonfire Night. I got so busy writing the pumpkin picking and trick or treating experiences for Halloween and the bonfire party for 5th November that I forgot that I want to join in with them too! The whole reason I set Live in Love in Laugh in up was because I wanted to be able to have fun and more of a social life within my four walls and meet people who feel the same. When I realised that I hadn't got any of the ingredients for our Halloween feast or chosen the film I wanted to watch I realised I was doing something wrong. It was time to allow myself to join in and have fun and that's exactly what I'm doing. Suddenly I feel more relaxed, more optimistic and life just feels better and easier to cope with. If you're feeling overwhelmed and frustrated by life and you want to have some fun right now, then you can join me and the Live in Love in Laugh in members for a great time and lots of fun. We're all about living the best life we can and sharing that with others. . Join us now... Love what you read on my blog? Be the first in the know, get new entries sent straight to your inbox.
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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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