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 don't know if it's just me or because I have ME; but I never feel like I have enough time. It's like I'm in a constant race to get all I want done .
It's exhausting, especially when I realised that the race is just with myself.
Do you ever feel like that? I realised that there's no one else putting this pressure on me. Just me.
Seems kind of stupid when I made the connection; but it was a bit of a shock.
I've been telling myself for a long time that I don't have enough time to do everything and I was both right and wrong about that. I can't do EVERYTHING but then nobody can, whether they are ill, well or somewhere in between.
Also time is not my problem - time I have a lot of, in fact time is the one thing I have an abundance of.
Energy is my issue. I don't have the energy to do all I want, I have to pace, rest and sleep, which seems like wasted time; but in truth it's what I need to do what I do and keep functioning. It means I can run Live in Love in Laugh in and organise all thefun parties and events. It means that I have the energy to put together our Ocean Adventure in August, (more details to come; but a sneak peak - we are going to be swimming with dolphins, going in a helicopter and enjoying a Hawaiian Luau).
I'm just greedy and want to do even more! I'm not sure I could ever have enough energy and if I did then I'd be complaining about not having enough time. Yes I know, some people are never happy! Do you know the feeling?
Today I realised that I have to slow down and accept that everything takes its time, that the pressure I put myself under to get where I want to go is a) making me tireder and therefore slowing me down and b) not allowing me to enjoy the process. I have plenty of time to achieve my dreams and to get the word out about Live in Love in Laugh in and it's high time I started being kinder to myself.
How about you? Are there areas in your life where you could be kinder, gentler with yourself? Are there things you could relax more about and trust that they will get done; you don't have to be your own task master?
Leave me a comment and let me know how you're going to make the most of your abundance of time.
Image courtesy of dan / FreeDigitalPhotos.net
Life sucks when you're ill. It's even worse if you normally suffer with a chronic illness or disability. A very kind stranger has shared their germs with me and the best way to describe how I'm feeling is ughy! (That's a technical term, by the way).
It doesn't seem to matter what time of year it is, people are always getting sick and no matter how hard you try to avoid the germs, even if you're housebound, you still manage to catch them.
I want to share with you my top tips on what to do when you're ill and how you can feel better as fast as possible.
1. Listen to your body - that means REST if you need to. Take things slower, gently and don't try to push yourself because you should. It sounds simple; but do you find yourself trying to keep everyone happy, making yourself do things when you're feeling dreadful? Saying no or taking a day off will speed up your recovery time.
2. Eat what you can, not what you should - I know, I know, it's important to get lots of vitamin C and healthy food when you're ill; but sometimes it's more important to eat something, anything, when you're ill. Having had severe swallowing problems and nausea as a result of my ME/CFS I've learnt that you have to eat what you fancy and trust it's what your body wants.
If all you can face is chocolate chip cookies and oatmeal then do it. Don't worry if it's not typically "healthy" food, it's more important to keep eating when you can.
3. Nap. Whenever you need to! If you need to sleep during the day, do it! If your body is tired, trust it and curl up on the sofa or go to bed. You'll feel better afterwards.
4. But what if I can't sleep at night? This can be because you're coughing or feeling too ill to lie down, the best thing I find is to prop myself up in bed with lots of pillows and/or a bean bag.
Don't just lie there feeling ill, keep resting, closing your eyes to see if you can sleep and then do something for 20 - 30 minutes, before trying to sleep again. It's so much easier than lying there wide awake trying to force your body to sleep.
Make sure you have everything you need at hand to keep you entertained...
5. Have fun! This can seem impossible when you're feeling so ill; but the best way to get through any illness is to distract yourself with fun things to do. It takes your mind off your symptoms and helps you to relax, both of which are going to make you feel better faster.
Find your favourite film or book, listen to some music or watch some classic comedy on TV - you can never go wrong with Friends. Or check out Live in Love in Laugh in which I promise will give you lots of fun things to do and will take your mind off life right now.
Fill your time with things you don't normally get to do, so at least something good can come from being ill. If you're having fun then everything starts to feel better. I hope you'll be feeling better soon too!
What are YOUR best tips for feeling better fast? Share in the comments below.
Image courtesy of David Castillo Dominici / 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.
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...
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I've finished my first novel while enjoying copious amounts of chocolate and cake.