Aid4Amara YouTube Channel

Saturday, 7 May 2011


When you live with chronic illness you are faced with choices every day.  The most important comes in the morning.  If there was a gauge for emotion with happiness and hope at one end of the spectrum and desolation at the other, you would find that most of us wake closer to the dreary end.  But we choose through sheer willpower to push the needle through the middle ground and as close to the happiness end of the spectrum as we can manage.

One of my sisters suggested the other day that I consider CBT – Cognitive Behaviour Therapy, because I am striving for answers and treatment, rather than just accepting that there are none.  I think she fears I’m wasting time being unhappy with my life when it may never be any more than what it is now, so perhaps I should just concede defeat and be happy with what I have.

I had a few issues with that suggestion, firstly CBT has been found to be detrimental to people with CFS/M.E. often exacerbating our symptoms and causing more damage, and secondly and more importantly I don’t need it.  I’m not unhappy, I’m dissatisfied.  There is a huge difference.  When people make these offhand comments I do wonder how they would feel without their partner, kids, job, house, car, independence and income.  Would they feel satisfied and simply and easily accept this fate?

After spending a decade on forced introversion, there is no emotional stone unturned, no thought or theory unconsidered and no escape from reality.  We don’t have the luxury of denial; every moment of the day is a brutal truth.  I believe my sister simply doesn’t want me to struggle unnecessarily.  But acceptance is one thing, giving up is another.  So although I have learnt to accept this fate, I will never stop hoping that things might be different.

Instead, every day I get up and choose to hope for better days.  I watch the morning sun filter through in shafts onto my balcony making dappled light dance over chairs and imagine waking up and feeling refreshed.  I collect pretty vintage pieces for the moment I may be able to wear them somewhere other than at home.  And in my dreams I play netball in fluid agile movements that feel almost like dancing. 

I will not just resign myself to this fate forever.  CFS is an ever-changing beast and one day some of my dreams may be possible.  Why should I just give up on the idea of having a family, my own little cottage, my first new car, a decent income or a career?  I am not delusional, I am always honest with myself, so I have accepted that I may not ever be a mother, or own a house or car, or have a career, but it’s nice to imagine having those choices.

At the moment I don’t.  But what I do get to decide is whether I am happy, and you know what, mostly I am.  And when I’m not, I hope to be happy the next day.


  1. it can be so hurtful to have those closest to us, always meaning well, simply make suggestions. they haven't a clue that if we did just give in and 'accept' our current reality, we may no longer wish to be alive.
    but instead, you put it so beautifully, we awaken everyday with hope. i love your comment that there is a difference between unhappy and dissatisfied!
    great post!

  2. How timely that you posted this now :)

    You captured it brilliantly, as ever. This isn't unhappiness or depression, this is being unsatisfied with what our life contains and the limits placed upon it. Bravo.

    The difficulty, of course, as you alluded to in your comment on my blog, is that this isn't like a lot of other situations (either health-related or not). If I'm unhappy with a job I find a new one ... if i'm unhappy with a career choice, I re-train and move in a different direction... if i'm unhappy with a relationship, I end it etc etc....

    But how do we change the fact our bodies won't cooperate in letting us do the most basic of tasks? That's the philosophical weight I'm carrying around right now. And it's why the positive mental attitude brigade infuriate me, haha. If it were as simple as following a treatment plan or adopting a mindset don't they think we'd have reached that conclusion?

    As you said to me though (and I might be mis-interpreting a little, sorry) acceptance is important. Still bloody sucks though.

    I'm so glad our paths crossed, Amara. Your caring heart shines through in everything you do and you're a funny, intelligent woman. I hope so much you are playing netball or pool again in the not too distant future xx

  3. Lise - thank you. It is true though isn't it. We're as happy as is possible considering our suffering? xoxoxo

    Barry - That is exactly right. And I have become quite harsh towards healthy people who complain about the same shit every day - change it. We don't have that luxury, but they do.

    As for acceptance - I do not mean that flippantly, it is not easy and some days I cannot stomach it, and those are my darkest days. It's easier when you just stop railing against it, because we just do not have the energy and it gets us nowhere.

    And I hope that you may be lucky enough to recover more quickly than some of us. Thanks for the kind comment and for reading. xoxoxo

  4. How beautiful you write, a skill that conjures emotion and even more love than I can say in words. I love you, and hope every day that you can have those things that seem so out of reach for you. xoxoxo

  5. <3 you Rhi. Thanks honey xxoxoxx

  6. Thanks, I needed to hear this today :) xx

  7. Thanks Lee Lee. Means a lot xoxoxo

  8. You are so beautiful amara... You should never have to just accept something if you don't want to. We can accept things but not give up, keep on fighting.. I think you are amazing and I hope oneday you'll be kicking arse at pool again... Mulligrubs :0)

  9. Thanks sweety pie. You rock. And thanks for making me smile 8)

  10. Hey Marzticles :)

    I feel blessed & extremely lucky to have you in my truly are amazing, and are always teaching me about love and life.

    Love u long time :)

    Lisa xx

  11. Thanks Miss Lisa, you just made me tear up.
    Love you xo

  12. Already said on Barry's blog but after so long with M.E. (35 years) you are absolutely right to say that 'acceptance' is a better way forward. All the striving and wrestling and anger and frustration is so energy draining and doesnt help. Dont get me wrong...acceptance doesnt mean resignation: roll over....but it does mean taking things as they come. Easy to say, very hard to do x

  13. For all of the things you don't have right now, or can't quite chase after just at the moment...there is something you do have that a lot of people don't! The ability to write, to create beautiful, real imagery from words on a page...that is an absolute talent xx love you xx Di


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