  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. 
 Christmas can be a magical time, a chance for family and friends to come together. When everywhere you look you see light, sparkle and beauty, despite the darkness of December (at least it's dark if you live in the Northern Hemisphere like I do). Christmas feels very special and is something to look forward to. Unless that is you're ill and your health is making life hard. All the things you can't do is suddenly thrown under the bright twinkly fairy lights and it can make you feel miserable. Simple things like decorating a Christmas tree can be a challenge, if not impossible. For many years I couldn't stand up to decorate a tree, I couldn't even walk and sitting upright made me dizzy. It was miserable as the Christmas tree is one of my favourite things, that and the food and presents - they were seriously affected too by my illness; but that's a whole other story... I used to lie in bed listening to my family decorate the tree. They put it on our landing, so that I could at least glimpse it sometimes. They wanted to include me, for me to be able to be a part of their festivities; but I was miserable and frustrated. I wanted to be the one hanging the baubles, getting scratched by pine needles and balancing on tip toe to put the fairy on the top. As with everything, I escaped into my imagination, pretending that I was decorating the most amazing tree, choosing all the delicate glass ornaments that I would hang up, the colour scheme I would have and the Christmas songs I'd be singing. It wasn't the same as a real tree; but it was fun. That's why I put together my own virtual Decorate your Christmas Tree Party in your Pad. Taking all the elements of decorating a tree and creating a fun experience which is perfect if you're too ill to have a tree of your own. Or maybe you're having to do lots of resting this December and you fancy an alternative guided visualisation to walking on a beach? Then this will be great for you too. It will allow you to imagine a special tree decorating party where you get to decorate your virtual tree your way. No having to let others choose the decorations! The guided Tree Decorating experience as usual comes as an mp3 to listen to and an e-magazine. I've packed it full of easy, low energy activities like how to make festive smelling cinnamon decorations, the story of the first Christmas trees and even some yummy recipes for Cheats Mince Pies and Easy Fruit Punch, perfect for snacking on during the festive period.
P.S. Don't forget if you're looking for the perfect present for someone who is ill or housebound, you can now get them a Gift Voucher so they can choose their own virtual adventure. Check them out here...
 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...  Image courtesy of artur84 / FreeDigitalPhotos.net It’s the height of summer and you hear the thud as letters hit the doormat. You flick through them and a small, glossy, brightly coloured postcard jumps out at you.
It’s from a friend and she's telling you what a wonderful time she's having, and how she wishes you were there-- and you look at the card and impulsively decide, "I'll DO it!" Then you look around and realise that going away isn’t a possibility, just going out is difficult and getting on a plane is impossible. Your heart sinks as you wonder whether you'll ever be able to have a 'normal' life. That’s the situation that faces so many who are house bound because of illness or disability, or who are stuck going in and out of hospital. When you're in that situation, all you can do is hear about other people’s amazing adventures. Up until now. After being bed bound for six years with ME/CFS I came up with the idea of a Holiday From Home. I found a way to enjoy the fun and relaxation of a holiday and now I’m sharing that with other people. My first creation of this sort was a full holiday experience without ever leaving my room, where I put pictures up, ate the traditional food and even paddled in a foot spa pretending it was the sea. From there, I created magical experiences that others could share. Experiences where it doesn't matter where you are in the world or whether you can even leave your sofa or bed-- you'll be whisked away to a beautiful place that seems so real you'll actually believe you've been there. Just because life has put limitations on you, doesn’t mean you can’t have fun and with my help and a pinch of imagination you can have a great holiday from home. That's why I'm excited that in August I'm organising my latest virtual vacation and I wanted to invite you to join me. We're going to be setting off on a luxury yacht to enjoy our Ocean Adventure - you'll be swimming with dolphins, sipping cocktails, eating ice cream on the beach and exploring a deserted island on our own treasure hunt. It's going to be fun and fabulous and you can be there too. Click here to see all the details... Webcams are an amazing way to see the world without ever going out or getting onto a plane. These are some of my favourites. Just click to be transported.
PS These links are unrelated to Live in Love in Laugh in and ww.clairewade.com we hold no responsibility to their content or subsequent links. |
 
Claire WadeI won the Good Housekeeping Novel Competition. My novel, The Box, is going to be published on 25th July 2019, by Orion Categories
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