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Blessing 102 – Writing to release the ache in my chest April 12, 2012

I’ve set myself the challenge of writing 500 words every day, I know I’m meant to be doing Script Frenzy; but unfortunately life’s been so busy I haven’t been able to start, so I decided to stick to my novel instead. I sometimes get this ache in my chest – don’t worry nothing physically; but its like there’s a whole, empty feeling that I couldn’t shift. I thought it was some kind of emotional ache, the loss of not being  able to do all I want to because of my ME. Then I started to write again and it felt better. I’ve realised its not something missing in my life, it’s all the words and stories trapped inside. If I take the time to write, I actually feel better, so much freer and lighter, it’s magical.

The thing is I have to do it every single day. If I miss one, just one, I go back to feeling the ache again. It is the weirdest feeling and one I’m only just realising. At least now I know I can do something about it; but I wonder if anyone else feels like they have to write every single day? If it’s as important a part of their day as  say eating? Maybe I’m just nuts, all I know is that writing not only makes me happy; but it seems to be keeping me sane to. That really does sound nuts!


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

Filed under: Disability,Life,ME — Claire @ 11:42 pm
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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 70 – Medical help just down the road

Filed under: Blessing Blog 2012 — Claire @ 11:06 pm
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I woke up this morning and within five minutes of getting up I was speaking to a paramedic, as you can tell it’s been a rather eventful and traumatic day. Fortunately things are okay now; but my brother, who’s diabetic had a bad hypo, combined with a migraine or virus – not sure which yet. His girlfriend called to say that she’d had to call an ambulance out because he was ill and acting drunk at eight in the morning – typical for some people; but definitely not my brother.

So bleary eyed and with my heart beating like it was about to explode I had to talk to the paramedic and give him details about Simon’s diabetes. Not the way I planned to spend my Saturday, with Mum dashing off to the hospital. I then spent the day trying to distract myself and with my phone constantly by my side. It was horrendous not knowing what was going on. I hate hospitals after being in for six weeks having been taken in for severe dehydration and sickness, so it was all a bit too frighteningly familiar.

Fortunately Simon is doing much, much better now. They’re keeping him in overnight; but fingers crossed he should be out tomorrow morning – he’s certainly desperate to get home! I am very grateful to all the medical staff who helped him and for the fact that we live in a country where you can turn up at a hospital and get all the tests and treatment you need for free. I just pray that the current government do anything to screw that up because despite its flaws, the NHS is one of the best things the UK has going for it.


Blessing 20 – Putting in the effort to get something back January 20, 2012

Filed under: Blessing Blog 2012,Disability,ME — Claire @ 11:56 pm
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Over the past few weeks I’ve been thinking about what it is I want from life, there are so many things I would love to do; but I don’t want to do them while still ill. I’m sick of compromising and having to fit things round my health/illness. Everything I do has to be measured, calculated and planned down to the smallest detail. That is incredibly frustrating.

There are lots of things on my wish list – like travel, getting married, having a family; but I don’t want to do them with ME, because the level of enjoyment you get is reduced. There’s always something you’re having to ignore, pain, tiredness, feeling like you’re missing out, the sense that you have to compromise when other people don’t. I’m putting off so many things, waiting until I’m better; but I realised that I need to put in a bit more effort to achieve the results I want, i.e. good health and lots of energy.

I am doing a lot of the right things, eating well, drinking lots of water and pacing myself; but I know that I could be doing more, more meditation, better quality resting, yoga breathing etc. I know that all those things are good for general health, even if they won’t cure me; but I think it’s about time that I put in the effort. I’ve been sitting back waiting for my recovery to happen; but maybe I need to commit a bit more of my time and energy to my health.

In the past I’ve been disappointed, alternative therapies haven’t helped, I’ve gone through the promise of recovery and the disappointment when it doesn’t happen. It’s easier to just forget about getting better. It doesn’t happen so you accept that it won’t happen for a while and then you don’t improve so it proves you right.

However I wouldn’t expect to learn a new skill without putting in time and effort, so maybe I can’t expect to get better without committing to doing all I can to give myself the best chance of good health. I know it will take work and results aren’t guaranteed; but there’s so much I want out of life, that I need to do something to hope it happens.


Herbal Medicines Ban – Sign the Petition April 28, 2011

Filed under: ME,Post a Day 2011 — Claire @ 10:34 am
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This is from a blog post here:- http://www.crystaltoucan.blogspot.com/

I know there’s a lot of debate over natural health products and vitamins, I’ve tried most of them with varying degrees of success; but I think people should have the right to choose, especially when traditional Western medicine often offers little help or hope.

If you or someone you know has benefited from alternative medicine, please look at this website to sign the petition.


From the original email:-

Dear All

This is urgent, please read (or listen) and sign the petition. We do need to act on this – I worry what might be next!

On April 30th, natural medicinal plant products (essentially
anything other than the petro-chemically derived fare of multinational
pharmaceutical companies) will be effectively banned in the EU. The
registration procedure costs that will be going into effect will be
completely prohibitive. If for no other reason than protesting the criminal
nature of this effort (whether you’re aware of the long-term physiological
damage of many big pharma preparations or not) go to this link and sign the
petition. http://savenaturalhealth.eu/

Only you and I can stop Big Pharma domination. They intend to,
and ARE GOING TO, protect their incomes unless actively stopped. Sit in
silence, and pay the consequences. Time is running out. If it’s not
stopped in the EU, we may NOT be able to stop it elsewhere.


Bill Hargrave


What’s the wackiest advice you’ve ever heard? January 16, 2011

Filed under: Life,Post a Day 2011 — Claire @ 9:54 am
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Ooo now this is a good one! Having been ill since I was 10 I and my family have been given some cracking advice over the years of how to get better – how a friend of a friend got better, or what this woman’s magazine advises or there’s been this thing on TV and it wasn’t for ME; but maybe it would help…

Now I know they were being kind and trying to help and I do appreciate the sentiment; but it could get really frustrating the sense that people didn’t feel like we were doing enough to get better – believe me we were trying everything! All the ones ending in y – homeopathy, osteopathy, reflexology, kinesiology, magnet therapy, mickle therapy. As well as nutrition, herbal supplements, Chinese medicine (YUCK), Ayur Veda, meditation, reiki (which I do love and now practice even though it didn’t cure me), the Lightning Process (more of a minor spark than a bolt of lighting). To name but a few!

I’m not knocking these treatments – I actually believe that for the right conditions and cases these treatments can work, they just didn’t for me.

Don’t even get me started on the suggestion relating to psychological treatments…

The wackiest of all the ideas though,  was the suggestion that cold showers would cure me (what?!). ME has a major adrenaline component to it – how would ducking my head under cold water make me any better? I still wonder to this day why anybody would think that helps.