Exploring the world through the web

Experiencing life in any way you can.

Found a new home! July 16, 2012

For a long time I felt all blogged out, Postaday 2011 used up all my blog ideas and words and I was starting to feel like I was trying to find topics to write about and I didn’t want to pollute the web with unnecessary words, so I went quiet, left my keyboard alone (well sort of) and did some creative writing instead; but now I’m back: but I’ve found a new home over at http://clairewade.com I’d love it if you came over and checked it out!

I feel inspired again after a very long time and I’m eager to get back to blogging, maybe not every single day, Postaday was truly hardcore; but certainly once a week if not more, depending on when inspiration strikes. So if you have enjoyed what you you’ve read here, find more of it here…


Blessing 78 – Life’s too short March 19, 2012

Life’s too short for procrastination, for fear of failure, for regret and anxiety. There’s too much to do, too many places to go and people to meet. So many amazing possibilities and potential waiting for each and every one of us.

It feels like there are always a hundred more tomorrows, so many that you put off the things that really matter. You put them off, the things you want to do, because you think you shouldn’t or because there are more important obligations, duties that you have to do, responsibilities that you have to live up to. You end up missing out, not finding the satisfaction and contentment which is out there to be found and enjoyed.

Things can change in a moment, lost in an instant. Today my vow is to not only appreciate all the amazing things in my life; but also to stop letting fear from letting me live the life I truly want. I’m the master of my own destiny and I choose to not let anything stand between me and happiness, especially myself – I’m the biggest barrier to most things.

I get scared of losing everything, of risking what I have for what I want; but I’ve picked myself up before and if I had to, I’d do it again. Looking stupid, feeling embarrassed, making mistakes,  none of those are good enough reasons to prevent you from doing what you really want. The fear of them happening is much worse than the reality if it does happen. It’s time to find some courage and stop letting fear control me. “Only Thing We Have to Fear Is Fear Itself”: Franklin D. Roosevelt ‘s First Inaugural Address.



Blessing 74 – The way things work out March 14, 2012

Today Mum and I were driving back through the city and I saw the sign that says “Norwich, A Fine City” which is true, it really is. It’s a lovely place to live, with beautiful countryside, close to the sea, near to London; but not too close and with a great mix of history, art, science, architecture, shops, businesses. It’s home to lots of lovely people too. Norwich really has it all and is definitely worth a visit. I

After I saw the sign, I had this sudden thought that my life would be completely different if my parents hadn’t moved here over thirty years ago. They could have gone anywhere, not just in the UK; but the world and my life would have been completely different. I would be a completely different person.

The people I’ve met, the things I’ve done, the opportunities that I have had, all came because of living where I do. Who knows what life would have been like if I had lived somewhere else, it would probably have been completely different; but that’s not to say it would be better or worse.

As if to reinforce this idea we just watched Grey’s Anatomy and it was the episode If/Then which explores this idea of what your life might be like if you made different decisions. We are both huge Grey’s fans and seeing the well-known and much-loved characters acting in completely different ways was brilliant. The best part was you could see how they would have got to that point if things had been just slightly different.

At times I think it would be cool to peep into a parallel universe – Fringe style – and see how things might be. There are even times when I get this strong sense that I’m meant to be somewhere else, not that I’ve forgotten to be somewhere; but like there’s this other life I’m meant to be living and for a short time I can feel it pressing up close to me. It’s an odd sensation.

Fortunately at the moment I feel happily grounded and pleased to be living the life I have.



Blessing 73 – I am enough. March 13, 2012

I’ve been skirting round this issue for the past week, an inner struggle with where I am, how well I am and how I identify myself. I’ve got lost in the storm inside my head and it hasn’t been a comfortable or pleasant place to be.  Today I had a break through, one that I didn’t see coming at all. I’ve been hearing people say that you have to appreciate what you have and I struggle with that. I know I have so much; but I want more, mainly health and energy which will allow me to do more of what I want. Someone said that I was perfect as I am, right now, in this moment. I couldn’t hear that, all I could see was my flawed and broken body. I wasn’t good enough for me, how could I be for anyone else? None of my achievements seemed to matter because I wasn’t well – that sounds stupid now; but I really did feel like that. Everything I did I overlooked because it would only be good enough when I was healthy.

Today I sat and I tuned in to me, to the part of me that is still and calm, strong and powerful. It started as a small sense which just grew and grew, expanding out and away, breaking through the layers of tiredness and fear. I got a really clear sense of my body, as if I was feeling it, all of it, for the very first time. I heard this inner voice that said simply I am complete. I am enough. It was the most calm and tranquil moment I think I’ve ever had and most importantly it felt true.

I’ve tried affirmations, telling myself that I’m strong or perfect or good enough; but they all felt false and hollow. This felt true and it came from within, deep in my soul, not formed by my brain and I felt it and recognised it. All the struggle, the stress and strain fell away.

I am enough, right here, right now. With my health as it is, with my energy, my achievements, my possessions, my life, none of those things truly matter or affect who I am. Achieving more, doing more, being more, getting better, it won’t change who I am. Right now and always I am enough. Enough for me which means I’m enough for everyone else. The knowledge is freeing and uplifting.

I am enough. So are you.


Blessing 71 – The whole of me March 11, 2012

As an extension of my thoughts yesterday, I’ve been thinking about who I am and what makes me up, the things I like and love, what motivates and inspires me. I’ve been trying to separate out who I am from my illness, so that if I stay at this level of health, who am I and what can I appreciate. It’s interesting as there are a lot of things I love to do and that I am able to do right now.

In fact almost everything I want is already in my life, the things I long for are extensions of that, like going out with friends more, or being able to do more for Holidays From Home. It’s quite enlightening and is making me realise that I may not have it all; but I do have a lot and although the ME affects the way I have to do things, it doesn’t change what I like and enjoy. Take the ME away and I’d be able to do more; but l wouldn’t be different as a person and my wants and desires wouldn’t be that different either.

I hadn’t realised that so much of my identity was wrapped up with being ill and that I felt like parts of me and who I am were on hold until I got better. That’s just not true and it’s time to let that belief go because it doesn’t help me.


What would I do to get better from ME? March 10, 2012

Filed under: Disability,Life,ME — Claire @ 11:42 pm
Tags: , , , , , , ,

The events of the past day has brought up an inner debate. When I was first diagnosed with ME I was told that I was lucky, because I was seeing the same pediatrician who saw my brother for his diabetes. The doctor told me that I would get better; but that Simon would always have diabetes. Many times over the years I’ve flashed back to that comment and thought how wrong the man was. I lost everything, my education, my friends, the ability to walk, talk, eat, sleep, go out, have a life. I’d take the diabetes every single time, even after everything that Simon’s been through with his bad hypo this weekend. Even Simon has said he’d rather be diabetic than have ME.

It’s made me think what I would be willing to do to get better. If I could do four injections a day, like Simon, and then be able to get on with an almost normal life I’d take it. Pop twenty pills an hour, every hour – yes I’d do that. Have an operation, sure sign me up.

Simon is meant to test his blood sugar levels daily – I thought it would be so cool to have a test like that for energy levels. A drop of blood and it could tell you how well you’re doing, if you need to rest more or you have enough energy to go out, work for another hour, stay up later. It would make life so much easier without the hit and miss of trying to work out how you’re feeling and what you can and can’t do.

I’ve also been thinking about what I wouldn’t do, I wouldn’t have an operation that had a high chance of dying or being made much worse, because at least I do have a life and I can do some things, with the hope of getting better.

I guess I would be willing to do something if it meant that my life would be shortened; but only by ten years, no more, if it meant I would be guaranteed complete health and I could fill the time I do have with everything I want to do. I’d rather a shorter full and happy life than have years and years of watching everybody else do the things that I want to. I guess I would even be willing to give up the chance to have children. I really want to have children of my own, I always have; but right now I’m not well enough to even consider having kids, it wouldn’t be fair on them, so I wouldn’t really be in a worse place than I am now.

I think one of the hardest parts of this illness is the hope that you might get better. I know that sounds insane and if I had an illness that was just going to get worse then I’d probably find it just as hard, if not harder; but it feels like there’s always this golden carrot being dangled ahead, this hope of recovery. The problem is it doesn’t happen for everyone and there’s no way to know if you’ll be one of the lucky ones. There’s no rhyme or reason to any of it. I think some of the worst pain you get with an illness, any illness, is the hurt of wanting life to be different, aching for the things you can’t have; but I’d rather come to terms with it and accept that this is where I am and will always be. Then I could make the best of it. I do try to do that anyway; but I know that in my head I’m still waiting to magically get better, so that all the big dreams, getting married, having children can all happen.

I know that healthy people don’t always achieve those dreams and that there are ill people who do get them; but for me they have always been tied to being well. I can’t really imagine finding a relationship that would work with my health at the moment, I’ve never thought it would be fair to force this life on someone who had other choices. I have been re-thinking that view recently; but I still can’t believe somebody would willingly accept this. I know that there are lots of amazing people who have, many of my friends are very happily married to amazing men and I’m not just a little jealous of them. I’ve just never met anyone who’s right for me. I hadn’t really been trying to meet anyone if I’m honest, I kind of thought I’d be better by now and it wouldn’t be an issue; but I am, so it’s left me wondering where I stand (or sit) with everything.

I’m torn between embracing my current life completely, accepting that I’m perfect as I am and working hard to aim for the life I want. How is it possible to balance the two? To accept the present and still hope for the future? I really don’t know. I’m not depressed or feeling self-pity, I’m just trying to work out how to be: to be present, to be happy, to be me.


Blessing 52 – Gradual Progress February 21, 2012

Filed under: Blessing Blog 2012,ME — Claire @ 10:25 pm
Tags: , , , , , ,

Today feels like a rather backwards blessing, because I haven’t been feeling great this week. I pushed myself to do the Valentine’s Day Party and I’m suffering with my ME now. It’s nothing new, nothing I haven’t lived with for years; but it is frustrating as I didn’t really do that much – not in the normal sense of things.

The blessing is that I’ve realised I don’t normally feel this bad. I still have low energy and can’t do as much as I’d like. I still sleep for three hours in the afternoon and have to calculate how much energy I have for every little thing, always pacing; but I don’t have this background exhaustion the whole time anymore and that is pretty amazing. I’m pleased to realise that things are changing, even if it is incredibly slowly. It feels hopeful and like I’m moving in the right direction. So today I’m grateful for knowing I have been feeling better and that I will be feeling that way again, I just have to be ultra careful for a while. I’ve done it once, I can do it again! 🙂

By the way Happy Shrove Tuesday / Pancake Day! Also happy 2102 2102!

Also today’s Shaake was California Raisin – raisins, cherries and granola with strawberries instead of banana. It was so good!