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'm not particularly green fingered, in fact I either over or under water plants; but I do love flower arranging. I know it's seen as an old lady thing; but I think it's cool and it brightens up the house. You can even make garage flowers look good!
The weather has been gorgeous at the moment and our garden is looking beautiful. It's a real joy seeing the plants coming on and establishing themselves. When we moved in four years ago, all we had was a rectangle of patchy green.
The soil is pretty rubbish, literally, the builders buried all their rubble and bricks under the garden; but somehow the plants seem to find a way to survive. I'm sure that's a very deep metaphor for life there.
My favourite flowers are roses, clichéd and girlie, I know; but I adore them. We went to a special rose seller called Beales Roses and chose scented varieties. Basically we went round sticking our faces close to each of the plants and taking deep breaths. We'd have looked insane if other people weren't doing the exact same thing.
I've been wanting to go out into the garden to pick some flowers for a summer floral wreath; but the evil that is pollen and hay fever, has been keeping me shut away in doors. Seriously, why can't there be high pollen in November when it's cold and wet outside? I wouldn't mind staying in? Being allergic to the summer sucks.
Fortunately I just have to wait it out until the end of July. I'm counting the days.
I decided that I would just go for it this evening and I'm so pleased I did because it was gorgeous being out in the fresh air, picking the flowers and foliage. I only got stabbed by rose thorns three times, I didn't bleed and I was only marginally sneezy afterwards. I call that a victory.
This is the unassuming oasis ring I started out with and below is how it turned out. I have to admit I'm rather proud of it. It's now filling our living room with the glorious scent of roses. An evening well spent.
What's your favourite way to spend a summer evening? Do you have to hide inside from pollen too? What do you do if you can't go out?
New Year's Eve is hyped up as one of the most important nights of the year, a chance to celebrate, to have fun with friends and look forward to the year to come. Sounds great right? If you can go out, then yes. But what if you're stuck at home? Then it can be the most miserable and lonely night of the year.
I think that being ill and at home shouldn't mean that you have to accept feeling fed up and isolated. That you should be have as much fun as anyone else. It's your right.
You may have to do things differently. Your New Year's Eve may not look like everyone else's; but you can still have an amazing time. Not just pretend to have fun; but actually have fun, make some special memories and then be able to share what you got up to on Facebook and Twitter.
Trust me, I know what it's like. Having been bedbound for six years and housebound for even longer I've had both awful and amazing New Year's Eves and I've learnt what to do, to find the fun at home.
So how do you have fun at home? Where do you start?
First work out what makes New Year's Eve special to you. What's the first thing that comes to mind, the thing you wish you could do? Is it spending the evening with others? Maybe you can't imagine a good night without certain things to eat or drink? Do you need music? A favourite movie? Or perhaps you love to get dressed up?
You can do all of those things at home home and have fun preparing for the evening as well as on the actual night. Get dressed up, even if that's just wearing your best pjs and favourite jewellery, have some yummy party food and put on a great soundtrack to listen to. Invite your family or friends over or share your party with your friends online. True it's not quite the same as going out; but on the plus side you avoid the crowds, the inflated prices and the December germs.
New Year's Eve can be just like any other night, you can go to bed, pull up the blankets and wait for it to be over, or you can make the most of it and find ways to have fun, no matter what.
Reality may not change, life will still be there tomorrow; but for one night you can put that to one side and have an amazing evening to remember.
If organising your own virtual New Year's Eve party sounds like too much work, then why not join the official New Year's Eve Party in your Pad. We're going to be escaping to a virtual Scottish Beach to relax by a bonfire while saying goodbye to the old year and welcoming in the new one. Best of all joining in means you won't spend the evening alone. All virtual party guests can hang out together in our exclusive Facebook group, chatting, relaxing and generally having fun with people from around the world, who all know what it's like to be at home for New Year; but who want to make the most of the evening.
If you want to make this New Year's Eve one to remember, for all the right reasons - then come and join the fun at the New Year's Eve Party in your Pad. It's just a click away...
If you read my post Coping with "Big" Birthdays when you're ill or disabled. Turning 18, 21, 30, 40, 50... Things to be proud of you'll know that on 30th March I will be turning 30! I tried ignoring it, pretending it wasn't happening and then decided I wanted to make the best of it, so I'm throwing a Virtual Party in your Pad.
In fact what could be better than a 1930's Vintage Party, for my 30th on the 30th?
I'd like to invite you to join me and the other virtual party guests for some 1930's fun - it's going to be fabulous!
We'll be sipping on cocktails, while relaxing to the sounds of a big band. It's going to be a night to remember!
To sign up and get the exclusive party audio and magazine, as well as finding out all the juicy details on how it works, go here... http://www.clairewade.com/party.html
I'm determined my 30th is going to be a day to remember and I'd love you to help me make it that!
I want to let you in on a little secret, well a big secret really; I have no idea what I'm doing, pretty much all of the time, whether it's to do with my business, my writing or my health. I'm making it up as I goI along and hoping it works out. I remember when I was a little girl that everyone else, especially adults, seemed to have all the answers; they knew exactly what you should be doing and how you should be doing it. I felt like I was living my life waiting for people to tell me what to do, what to say, how to act. Writing that sentence makes me feel exhausted! I truly believed, and in a way I'm realising I still do, that other people knew what was best for me and that I had to do what they told me.
Obviously this is a hugely important thing when you're a child, listening to adults makes sure that you live to become one yourself; but I think somewhere along the way we need to learn that nobody has all the answers, in fact very few people have any of the answers. All they know is what worked for them, that doesn't mean it would, could or should work for you.
I think we're all making things up as we go along; but we're bluffing, like everyone else, that we know exactly what we're doing. It seems like a huge crime to admit to the world that you don't know it all. Well guess what, I'm admitting it here, I have no idea what I'm doing. I don't know it all.
Take my ME/CFS, I'm doing the best I can with it, pacing myself and doing what feels good, resting, taking time to sleep during the afternoon, drinking lots of water etc etc. Am I doing all the right things? Is there something I'm allergic to? Should I be taking more supplements? Resting more? Exploring my childhood to see if there's some emotional trigger I need to release? I have no idea!
With Live in Love in Laugh in I'm listening to what other people say works and aiming to do my own version. I'm creating virtual events like my 1930's Vintage Party in your Pad and having fun making it an event I want to virtually go to; but is it the right way? Should I be doing more, less, something different? I have no idea!
I'm meeting new friends, trying new things and hoping that I'm moving towards long held hopes and dreams. Am I doing it the way I should be? I have no idea!
The thing I've realised is that it doesn't matter. It doesn't matter what people think you should do, or what society thinks you should do, or even what you think you should do - you have to follow your heart and do what's right for you. What feels good, that makes you feel like you can breathe, like your heart is expanding and everything just feels better.
That doesn't change the fact that I still have no idea what I'm doing, pretty much all the time. I haven't got a clue if it's going to work out the way I want it to, or if it's taking me off in a completely different direction. The important thing is that we all feel like this, or at least that's what I think; leave me a comment if you do know what you're doing, because I would love to know your secret!
I think the world would be a much better place and we would all feel so much less pressure if we just acknowledged that none of us know what we're doing, that's just life. The fun part is just letting go and seeing what happens, trusting that everything will be okay, it will work out, and you just have to go with it.
What do you think? I'd love to get your perspective on it.
P.S. This post didn't feel finished, I felt like I needed to add some positive little conclusion and then I realised I was just trying to pretend I really do know what I'm doing. Mental head slap!
Image courtesy of Jeroen van Oostrom / FreeDigitalPhotos.net
Society seems obsessed with labels - young/old, single/married, straight/gay, rich/poor. It's as if we need to fit into specific boxes, so that we can be defined, so people know what to categorise us as. I know I'm guilty of this too, of the way I see myself and others.
Last night I was reading a book that asked out right Who am I? I wrote the question on a blank piece of paper and stared at it for a long time. I just didn't know how to answer it. Obvious words came up: woman, adult, daughter, sister, business owner, disabled, single. None of them described me though; they were just roles that I play in other people's lives. They didn't satisfy me, they didn't make me feel anything, other than slightly restricted.
I started a new line; maybe I could define myself more by what I love. This is what I wrote...
"I love stories, telling them, reading them, listening, watching, imagining and writing them.
I'm not sure if I got closer to Who am I? But I did realise what I love - it's sharing and stories. That's my passion in life, it's what I love the most and with that knowledge things feel just that little bit clearer.
How would you answer the question Who am I? What do you love to do most? I'd love to hear your thoughts.
Image courtesy of Vlado / FreeDigitalPhotos.net
I won the Good Housekeeping Novel Competition. My novel, The Box, is going to be published on 25th July 2019, by Orion