Tuesday, 31 January 2012

There's Something I'd Like To Share

There's something I'd like to share with you.  At the risk of whittling my readership down to two or three persistent souls, I'd like to talk about something I don't talk about much on my blog.

Living with a long term illness.

Not because I'm wanting to moan, or rant.  Simply in a bid to be authentically me and speak from my heart.

Thank you for staying with me on this.  There is some good news tucked in here.

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Living with a long term illness is tricky.  Not exactly an earth shattering observation, I'll grant you, but I'd like to explain why.

For those of you who don't know, I was diagnosed with a long term illness in 2003.  Initially I was told I had Chronic Fatigue Syndrome (CFS).  Subsequently, Myalgic Encephalomyelitis (ME).  I was 35.

For those of you who aren't familiar with ME, you can learn more by reading my post from January last year, called Hello Again, where I disclose for the first time here on my blog that I have M.E.

Before I became ill, I related to the world through movement.  I started ballet lessons when I was 4.  I took ballet lessons two or three times a week every week, right up until I left home at 19.  I swam.  I walked and ran.  I learnt to rock climb.  I rode horses.  I didn't learn to drive a car until I was 30 as I walked everywhere I went. I carried on dancing after I left home. I took tap lessons in my 20's. Salsa classes in my early 30's.  I found it really hard to keep still.  I fizzed with energy and loved it.  I even wiggled my feet in my sleep!  I never weighed more than 8 and 1/2 stone.  I was physically active every day throughout my life. Until I got ill.  Then my body stopped fizzing.

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Being physically healthy and knowing and loving the power and resilience of my body, and becoming seriously ill and feeling the vulnerability of my body is the most powerful (sometimes heart-breaking) change I have ever experienced.

Being unable to run away from myself (the irony of having ME has not escaped me... being that sitting still used to be nigh on impossible) I have gone on something of an internal journey.  I have been very angry at my body.  I have grieved the loss of being able to dance.  I am learning to be gentle with myself and to accept myself just as I am.  Out of that process something unexpected has happened.


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Living with a long term illness has forced me to look at my own vulnerability.  It has been a difficult and painful process.  Mainly because I have fought it tooth and nail.

But recently, having come-face-to-face with myself, I realised something very important...

It's in our deepest vulnerability that our deepest beauty lies.

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Since I've been ill, the way I view the world, and my place in it, has changed.  I feel less driven.  More patient. Gentler.  My heart has been opened and I'm learning to be less afraid to allow myself to be vulnerable.  I've started to hug first. I've learnt things about myself and the world that I don't believe I'd have understood in the same way without being ill.  In the spirit of allowing myself to be vulnerable, I'd like to share them here with you.

I've learnt...
  • If I cannot change what life brings to me, I can change how I perceive it.
  • What life brings to me isn't a personal attack, even though it can feel very much like it.
  • I always have a choice about how I respond to what happens to me.
  • Being vulnerable can feel like my biggest weakness but accepting my vulnerability is actually my biggest strength.  It opens my heart.  It allows me to be who I really am.  It allows me to be authentic.
  • Illness can offer an opportunity to heal my relationship with myself and others.
  • Accepting everything just as it is releases me.
  • Having compassion for myself just as I am allows me to feel compassion for other people just as they are.
  • I always have a choice to step into a new way of relating to myself, other people, and the world.
  • My external circumstances do not determine my happiness.
  • Happiness is a choice.
  • There is joy in the smallest of treasures.
  • Life offers opportunities to experience joy in every moment.
  • It's OK to be sad and cry because sometimes life hurts.
  • It's OK to ask for help.
  • Sometimes people can't help me but that doesn't mean they don't love me.
  • I always have the choice to come from a place of love or fear.
  • Coming from a place of love makes me feel loved.
  • What I give out always comes back to me.
  • It's OK to panic.  Life can be scary.
  • Whether I am physically healthy or not, all anyone ever has is this moment and I can choose how I want to experience this moment.
  • We are all connected.
  • I am much more than the sum of my physical parts.
  • Gratitude and acceptance have huge power in them.
  • Being healed and being cured are two different things.
  • Love heals.
  • Everything changes.
  • I am OK just as I am.  Even if I can't dance right now.

Since getting ill, I have been forced to stop.  I have been forced to step back from all the externals of life.  I  haven't wanted to but I've been forced to get quiet.

When I got quiet, and stepped nervously into the silent, peaceful place inside myself, I found something much bigger than me.

It feels good to have shared this list with you.  Thank you for reading it. ♥



Thank you Liv Lane for giving me the courage to write this post and press the "publish post" button.

100 comments:

  1. Some of the wisest words I've ever read :)

    Did you catch the fact I've been in a TV programme about ME/CFS for BBC Alba? Part one can be seen on YouTube here - http://www.youtube.com/watch?v=bB6B2BTL2zQ - although most of it's in Gaelic, it does have English subtitles, and you might find it interesting

    Kim :)

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    1. Thanks so much Kim, for your kind words and the video link. I'm going to take a look at the video this evening.

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  2. beautiful post. I love this--- If I cannot change what life brings to me, I can change how I perceive it.

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    1. I'm glad the post had meaning for you Michelle.

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  3. who you are is enough.
    I think I'll email you the rest of what I want to say
    xx

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    1. I love that "Who you are is enough." I've been saying it to myself ever since I read it here. Thank you. ♥

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  4. oh wow oh WOW...feels like a warm wave
    of wisdom breaking over me
    in a wildly refreshing way
    ....wanting to just lean into it
    and let it lift and carry me
    into some fresh freedom inside.
    lingering:)
    big tender thanks to brave you
    for this beautiful share.
    -Jennifer

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    1. Thank you so much Jennifer for your kind words and support. It means alot to know the post had meaning for you. Em x

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  5. I can relate to not being able to dance anymore; I was hoping to teach my grandchildren what I know but oh well - trials in life are hard and yes, we have to learn to live with them. For many their are no cures but the healing touch of our Savior makes all the difference.

    Thanks for sharing such wisdom.
    Ruth

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    1. Thank you for your kind words Ruth. I'm sorry to hear you're no longer able to dance either. Sending warm wishes.

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  6. Beautiful post. Life is what you make it. xxxxxxx

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  7. Oh Lovely it took a lot to write this post, it came deeply from the heart and i have tears in my eyes because i understand and felt every word that you wrote. You are a very beautiful and strong lady inside. Excepting things in our lives we can not change is a huge step to being happy. I am going to get my eldest son to read this post as he struggles living with his illness that is Crohn's disease. When its an illness that isn't visable to others its hard for them to understand and he gets so tired very easy and struggles to get to school some days and as he has no immune system due to his medication he gets very low and depressed to. Your words in this post where beautiful and powerful and really touched me. And i know that they will touch my son to. Big hugs to you. dee xx

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    1. Dee, your words here really moved me. Thank you for sharing about your son's difficulites with his health. It must be so difficult at such a young age to live with a chronic illness like Crohn's. I'm sending him hugs and support. Thank you for taking the time to write such a supportive comment. It meant alot to read your words. Big hugs and lots of love, Em x

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  8. You are such a brave and beautiful person! I am so in awe of you for not letting a diagnosis define you, but rather finding a new way to "be" in the face of it. Healing thoughts and prayers being sent your way.
    xo, Anita

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    1. Thank you so much for your kind words and support Anita. Em x

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  9. I too have walked the path of chronic illness and have also chosen not to let it define me. I don't like to talk about it either but have been opening up to a few people and have starting pushing myself away from the "why me?" to the "what's next" because I know that I can choose that path for myself. Great post!

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    1. Michelle, I'm so sorry to hear you are living with a chronic illness too. I find it hard sometimes to find the balance between not letting it define me and accidentally locking people out of my true experience. Writing this post was about opening up more and letting people see the real me. I'm glad you found something meaningful in the post Michele. :)

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  10. You have such a wonderful serene aura about you Emma...your words are wonderful and inspiring...you are a very special lady!
    Susan x

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    1. Thank you Susan, your kind words made a big difference to my day. Em x

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  11. Dearest Em, what beautiful words and acceptance of all you are. Truly touched me deep inside and the parts of me that has to accept the parts of my life I don't understand or want to have happened...
    Thankyou for sharing your tender vulnerability and courageous honesty. HUGE love to you xx

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    1. Jenny, thank you so much for your support and love, not just this week, but right through my blogging journey. You make this whole blogging business fab. Em x

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  12. your wise words as always have struck a chord with me, sending love and hugs, xxx

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    1. Thanks Cate, sending love and hugs your way. xxxxx

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  13. Very inspiring! I love "My external circumstances do not determine my happiness." Thank you for sharing!

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    1. Hi Aimee, I'm glad the post had meaning for you. Thanks for coming by and reading it. :)

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  14. I don't think you'll drive your readers away. It's very brave of your to share your thoughts so thank you. You may not be able to express yourself by dancing but I think your personality sparkles here on your blog.

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    1. It really made me smile that you wrote "I think your personality sparkles here on your blog." Thank you.

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  15. I wanna bust right thru this computer and give you a BIG hug! You are inspiring!!!!!!! Not only to me but to many more. Your story was powerful! I was mostly charmed that you told the story with a softness about it. I'm sure it's not easy. I love how you are choosing to see and espress the silver lining. Keep doing what you are doing!!!

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    1. Thank you for that big hug Teresa, it made a big difference to my day. Thank you too for your kind words. ♥

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  16. Your post today was inspiring to everyone. Remember we are spirit, that one day a body was born into this world but that was not who were were. Nothing can keep the spirit down!
    Lots of love,
    from me and Wilma~~

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    1. Sending lots of love back for you and Wilma. Thank you for your lovely words.

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  17. Life has thrown you a massive challenge, and you have accepted it with such grace and intelligence, Emma. This is a wonderful post. There is so much in what you say that I can think about and learn from. Thank you. xxxx

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    1. Hello lovely lady, thank you for your support and for cheering me on. I'm finally finding the courage to say what I mean and mean what I say. It's very liberating. If it was the 60's I'd be lighting a fire under my brassiere right about now. xxxxxxx

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  18. Well said Emma. What doesnt kill you makes you stronger. Take care of yourself. xxx

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    1. Thanks JayNic Knit Knacks, big hugs. x

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  19. ME too, if you know what I mean. Beautifully expressed; thank you.

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  20. Surrender is such a powerful thing...life changing and far reaching effects happen. You have moved through this door and have shared so much in your being open about the journey Life has given you. I am always thankful for our connection Em, and even more so now. With big tall hugs and love from Japan,
    Corry
    ps...I love the purple heart...recognize that gorgeous fabric...you made it SING!

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    1. Hello Cor, thank you for all the love and support you send. It always hits me with a big wallop and I love it. Sending love and hugs back. Em xxxx

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  21. Surrender is so powerful...it is the answer to the stuff Life presents us. To share your story of surrender to M.E. with us and to consider all the amazing inner and outer changes that have happened as you faced it head on (so you!) is freeing and powerful to me. I am holding you tight in my heart as always Em! thanks for sharing your treasure of a heart with us all.
    xx
    Corry

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  22. Look at all these people you're inspiring as a result of being brave and choosing to find the positive in a difficult situation. You certainly won't lose readers - you'll gain them, because they're seeing that deep beauty within you. Bravo!

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    1. Thanks Liv, you've inspired me to be brave and it feels good. Em x

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  23. Look at all these people you're inspiring as a result of being brave and choosing to find the positive in a difficult situation. You certainly won't lose readers - you'll gain them, because they're seeing that deep beauty within you. Bravo!

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  24. Look at all these people you're inspiring with your brave post! Love that you're finding the positive in this difficult situation. Bravo!!

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  25. A brave post - thankyou for sharing. You are so positive and reflective.

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    1. Thank you for taking the time to read my post. x

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  26. I can really relate to your post. I have a chronic illness (which I got at 30) and it has completely changed my life. Your post is full of hope, thank you for sharing.

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    1. I'm sorry to hear you have achronic illness too. I'm really glad my post had meaning for you.x

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  27. Wonderfully resonant words dear Em. Heartfelt understanding from me always. Love and hugs, Carla. xo

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    1. And from me to you Carla, love and hugs, Em xxx

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  28. Emma,
    You are truly a beautiful soul inside and out. Your words touched and inspired me. Thank you for sharing this post. Sending Healing energy,
    Kathy

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    1. Wow, Kathy, thank you. BBTL, Liv and everyone in the group have really inspired me. Thank you for your support.

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  29. thank you for sharing that vulnerability IS beautiful...and so relatable. you are lovely!
    -Blair, The Turquoise Heart

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    1. Thanks Blair, thank you for taking the time to read my post. Em :)

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  30. thank you for sharing that vulnerability IS beautiful :) wonderful energy to you!

    -Blair, The Turquoise Heart

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  31. What a powerful lovely list. Thank you for sharing it/

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  32. I feel moved by your story. Thank you for sharing.

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  33. I am moved by your story. Thank you for sharing.

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  34. This is so beautiful. You sound like such a strong, positive person and now the opportunity has risen to inspire others, and you have done that.I found this really inspiring Em. Big Kiss

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    1. Thank you Kindred Spirit, your kind words really mean alot. Sending a big your way. Em x

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  35. Great list of things you've learned! Love what you said about choosing happiness. Great post.

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    1. Thanks Laney, for taking the time to read it and leave a supportive comment. It means alot. :)

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  36. A post from the heart x take care x x

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    1. Thanks for taking the time to read it and leave kind words. xxx :)

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  37. Emma,

    I’m not sure how I found your blog ... I sure am glad that I did.
    It’s beautiful, creative, and honest.

    I read both your current posting and Hello again, and really connected with your words and the feelings behind the words.
    I was diagnosed with CFIDS and FIbromyalgia back in my 20s, I’m now 51. It’s been a long journey, yet it has been a journey of a lot of self discovery ... some of which I may not have tapped into if it weren’t for the physical issues.

    Like you, I have never blogged about it. I commend you for being so brave. It was written so beautifully.

    I also believe that many people do not understand the challenges we go through on a daily basis. Really, how could they? I know I look like I am fine, yet the pain is constant, and my struggle to find energy is almost the daily norm. The challenges are huge ... yet, on the outside, I appear to be fine.

    I have always taken the holistic approach to my health and along the way have found many incredible forms of self healing. I would be very happy to share some of what I have learned with you. Please stop on by if you are interested.

    Be proud, strong girl. This was an amazing awareness you created. So beautifully written.

    XOXO
    Eydie

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    1. Hello Eydie, thank you for your lovely comment. I'm so sorry to hear you have CFIDS and Fibromyalgia. I'm very interested to know more about your healing journey, and will visit your blog to say hello and connect. Your words "Be proud, strong girl" really struck a chord with me. I'm going to write them out and pin them to my wall! Thank you for your support. Em xxx

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  38. Thank you for this post, Em. Beautifully written and I think we could all learn from it. xx

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    1. Thanks for taking the time to read it Loo, and for your kind words. Em x

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  39. Emma this is such beautiful post, thank you for sharing your thoughts

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    1. Thanks Ewa, and congratulations on your wedding! Big hugs, Em xx

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  40. Emma, this is beautiful post, thank you for sharing your thoughts

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  41. wonderful post, indeed. thank you for sharing. I love this: It's in our deepest vulnerability that our deepest beauty lies. I might ponder on that for a while...

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    1. K8, thanks for readking my post, I'm glad it resonated with you, sending hugs, Em :)

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    1. Thanks Renee, for coming by and reading it. Your kind words mean alot. :)

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  43. Emma, this was a heart touching post. I'm sure this was hard for you to open your soul to the world. Thank you for sharing your story.

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    1. Thanks Sue, I did feel vulnerable but am glad I took the plunge. Em :)

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  44. Well said Emma! How few people are blessed with your positivity and spirit. I wish, no, hope I can reach a point where I can transform life experiences and pain into something positive and good like you have.

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    1. Thank you Anna-Lisa, sending love and hugs. Em x

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  45. You will be an inspiration to so many people out there who struggle every day.
    Such heartfelt and wise words.
    Big hugs.

    Bellaboo X

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    1. Thank you Bellaboo for taking the time to read my post and leave kind words. :)

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  46. Wow, what a positive outlook you have! I think it takes more courage than anything else to look within ourselves. Thanks for sharing your thoughts, and I am sure that many people will be very touched by your post.

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  47. Love your sharing all of who you are!

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  48. This is such an inspiring post! What you have learned would be an achievement for a healthy person, never mind you living with your illness! I love your positivity, which really shines through in every post on this blog!

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    1. Hi Annika, thank you for your kind words and support. Sending big hugs :)

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  49. This is such a beautiful post, thank you so much for sharing and for your very wise words, you really are a shining star, Scarlett x

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    1. Thanks Scarlett, it really means alot to read your kind words, and know that my post meant something to you. Did feel a tad nekkid when I pressed the publish button! Em xxx

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  50. Ah Emma, such a beautiful post and such a heartfelt and true learning about within vulnerability lies our deepest beauty. And as someone else who suffers from a chronic health condition that isn't visible to the world, it's a beautiful wisdom you share about being gentle with yourself, stopping being so ANGRY with your body (I get this one!! :-) and seeing the beauty in what we do have, in our lives, hearts and souls. That's pretty incredible. Much love, Kate x

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  51. ooh I posted a big long comment singing your praises lovely Em and I think it disappeared!! Am so sorry, but your beautiful post resonated strongly, especially in the acknowledgement that in our vulnerability lies our deepest beauty and strength. Keep shining lovely x Kate

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