Tuesday, 25 January 2011

Hello Again

I'm back.

I know it's been a while.


I've got lots to tell you.  But will start by saying, it's good to be back.  How have you been?  What have you been up to?  Have you had a fantastic Christmas and New Year?  I hope so.

O.K.  So, here goes... 

I believe in the power of stories.  I always have, even when I was small.  What I believe in more than anything is the power held in each person telling their story and having it heard.  I think it's very important that we hear each other, and metaphorically "walk a little in someone else's loafers" so that we can understand each others' experiences in the world.  It's why I love bloggers and blogging so much.  I get to hear how life is for other people and share pieces of their journey.  Frankly, it's like being given carte blanche to read someone else's diary.  Without having to hide under the bed while you're doing it.   What's not to love? 

I started this blog in 2009 as a way of beginning to tell a part of my story as I started to explore being creative.  But I kept another part of my story to myself.  It's something I didn't write about here in my blog last year when I was writing posts more regularly.  This blog was the place I could come to have a break from that particular part of my story.  But not telling you about it has felt like I'm not sharing a large part of how my life is at the moment, so after much lip chewing, I've decided that I want to share something with you.  

For a while now, I've not been very well.    

I was diagnosed with Myalgic Encephalomyelitis,  otherwise known as M.E, 7 years ago, and although I am hopeful that at some point in the future I will be free of it, at the moment I'm not.  Sadly, it causes me a lot of problems, and so there are times when I cannot blog, and cannot be creative and cannot read other blog posts or respond to lovely comments I have received here.   I've been chewing my lip a lot, trying to work out how much of this I've wanted to disclose.

This is mainly because people's reactions to M.E. can sometimes be a bit difficult to deal with, in all honesty.  

M.E. often tends to get mistaken for:

1.  General apathy
2.  Depression
3   A lack of trying hard enough to get well

And that's just some of the medical profession.  Ahem.   


As I've said in the past, I tend to err on the side of keeping my personal life personal.  Although there are times when I can't hold my own water ( Claire, I most humbly apologise for that night in 1994 when I sang like a canary...  And not in a good way), when it comes to talking about not being well, well, I just don't feel comfortable doing it.  Instead I tend to keep it all to myself, and struggle on.  Keeping the struggles private.

I don't really want to do that any more.  It feels as if I am hiding something about myself.  I'm not.  It's just that, like I said before, my blog has been the place I've come to be me.  Without having to think about being ill.  

Having done lots of thinking (If there's one good thing that comes out of having to lie down a lot, it's that you get plenty of time to think...  And chew your lip...  Oh, and count your wrinkles...  6 gooduns and three that aren't really putting their back into it...  Who am I kidding?  I've lost count.) and what came up for me was that being ill was becoming something like a secret here on my blog, and I didn't like that.  I'm not ashamed I've got M.E.  I'm sad I've got M.E. and can't do what I used to be able to do.  And I'm very sad that people don't always understand what M.E. is and the impact it has on a person's life.  

Somehow, not telling you I'm not well hasn't felt very self-accepting.  And, for me, 2011 is all about self-acceptance, self-kindness and celebrating what's great about life.     

I started this blog in 2009 to explore what I could do, rather than lament what I couldn't.  And so my journey into creativity began.  I was hoping being creative would bring about a miraculous cure and I would be free of M.E.  It didn't.  I was hoping being creative would make me happy.  It did.

One of the aspects of having M.E. that I have found most difficult is the sense of powerlessness that comes with the illness.  Literally and metaphorically speaking.  The illness is often misunderstood by the medical profession, the media, government agencies, and many people who don't have first hand experience of it.  The grinding reality of dealing with that on a daily basis can be very demoralising.  On top of dealing with the symptoms.  

Writing this blog and exploring being creative have given me a connection to who I am beyond the illness.  I am Emma who likes jewellery, Emma who loves textiles, Emma who thinks cup cakes and sausage sandwiches are sent from Heaven, and Emma who thinks ready salted crisps are better than alcohol.  (I really do.  I get drunk on the fan-ta-bulousness of those little bleeders every time I open a bag.)
   
I don't know if I'll talk much about Myalgic Encephalomyelitis here on my blog.  My blog is the place I come to celebrate what's completely fabulous in my life, and to have a rest from being ill.  So I might mention it if it's getting me down, or if I can't blog for a while.  But other  than that, I probably won't say too much about it.  M.E. is something I currently live with, but it's not who I am.  I want people to see me first.  Not an illness.

I've included two short films with this post that explain really well what M.E. is all about.  Please take the time to take a look.  Someone you know may have M.E. and not be telling you about it because they're afraid people won't understand. 

I hope you understand where I'm coming from with this post.  And thank you for still choosing to follow my blog, even though I haven't been around.  If I don't post for a while it's because I'm not able to.  If I don't reply to your messages or comments, it's not because I'm not supremely glad to receive them, but because I'm not able to get back to you right then.  I have to balance everything I do with rest.  I also have quite a lot of pain and discomfort and so am not always able to type or make anything.  There I've said it. I've admitted to the world, that at the moment, I'm not well.  And the world as I know it hasn't collapsed.  What a load-off.











P.S. I've been teaching myself to crochet and have made a wool flower.  It looks like a model of my lower intestines but I'm very proud of it.

11 comments:

  1. OH hello you! We've been waiting.
    Nice to see you back over here.
    The lower intestines thing was very creative - Damien Hirst would be proud!
    :-)
    xxx

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  2. That was interesting, I learned a lot. I think it is common that many long-term or severe illnesses are not fully understood by the general public. No one can really understand until they are suffering or someone close to them is.
    I don't think the problem is that people don't understand, it is that they are intolerant of the fact that people are actually suffering. They just refuse to believe that it is not all in the mind.
    While I do think that having good mental health can greatly help a recovery from certain illnesses and can prevent other illnesses, nothing is going to cure or prevent everything.
    You can say that people are being punished or rewarded but that means nothing, illnesses don't seek people out and people don't seek illnesses out, they just are. They just make you suffer. What is nice is people who won't let anything stop them.
    Will you be posting a picture of the wool flower?

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  3. I was pleased to see in my sidebar that you were back blogging! But I was sorry to read about your M.E. which must been so frustrating, especially with it being so frequently misunderstood. Hope you will soon be back to better health, and that in the meantime, your blog, your creations and the blogs of others, will bring rays of sunshine into your life.

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  4. You know I understand :)

    And you are right - it is a part of who we are, but not the defining part of who we are. This is why on my blog sometimes I write about it, or the effects of it, but most of my posts are about all the other things in my life.

    Write when you can, respond when you can, and don't beat yourself up when you can't :)

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  5. Liza, it's great to be back, and your link to my welcome back video on my profile made me laugh out loud! Thank you! And I will be posting some pics of my lower intestine inspired flower very soon! x

    Aoife, thank you for sharing your thoughts here with me. It's great to be back blogging and lovely to hear form you... x I will be posting pics of my crochet flower!

    Thanks Alix, yes, blogging is a wonderful thing, and I love it! Thank you for being so supportive. x

    Kim, thank you. I know you understand. I'm very glad I wrote this post, and happy to know I have lovely friends in the blogging community who understand and are supremely supportive. :)

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  6. I am totally with you on this. I have endometriosis, but I too don't go around broadcasting it. I'm not going to die from it, but I'm not going to get cured either. Like you, I have good days and bad days, and like you I am determined to make the most of the good days. I really think that's the best we can do. But be assured, we will read this blog because of who you are, your (very positive) outlook on life and your dashing sense of humour. We are following your adventure alongside you very willingly, M.E. and all.

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  7. well girlie, thats that outed now then.
    Sometimes its nice to be whomever you want to be, and sometimes its nice to be who you really are.
    Personally, I'm just SO glad you're back- I kept having to come over and stare at those gorgeous cakes!

    I long ago came to the conclusion that if you can't change something, then just as you've done, you have to change the way you look at it.

    In my book, the biggest bravest step is to admit to what you feel is a weakness, and then somehow that weakness becomes a strength.
    Illness may not define you but it sure as hell makes you a stronger person- if you can get through the years of what you've got through then blimmin 'eck you can do ANYTHING! (might just have to have a lie down afterwards though!!)

    xx ps (I'd have sent this more privately via email but couldn't find an address)

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  8. Hi lovely Emma! It's so great to see you back. I've missed you. As you know, I know about your illness and you know about mine (still not diagnosed!) but I'm glad that you felt able to share here. Lynda xxxx

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  9. Yayyyyy! I'm soo glad you are back for I have missed you! True!
    Your beautifully written words and musings, always from the heart...take me on a wee journey usually accompanied with a sizable sprinkle of sparkle and a huge ray of sunshine! :)
    Thankyou so much for sharing your story....while I wish it weren't so..I feel grateful just to have stumbled upon you and ALL your beauty :)x
    Ps....yep, I'll buy a lavender sachet for $42 if you'll buy my journal for £1000! heehee!!

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  10. Welcome back!
    Have a sweet sweet Sunday, Em xx

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  11. Autumn Mist, thank you. I'm sorry to hear that you have endometriosis but totally appreciate your understanding. xxx

    Ted and Bunny, thank you so much for those gorgeous thoughts, I really appreciate you taking the time to be so supportive. It means a lot. Yep, the cat is definitely out of the bag now! What a relief.xxx

    I've missed you too LaaLaa, it's great to be back. Sending love, xxx

    Jenny, I've missed you too and am sooooo glad to be back. Thank you for being so supportive. xxxx

    And you too Saskia. xxxx

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