Micelle wrote this several weeks ago and I have struggled with posting it here. However, it does give an insight into my life, for those of you who may be interested!

More importantly, I dedicate it to all who live with a chronic disease/illness/condition. We may be challenged, even ‘controlled’ by a health or life issue – but we are not defined by it. How we are defined and who we become is our choice. However ‘traumatic’ our situation, I strongly believe there is a reason and a lesson. It is up to us to see that and accept it. May you find your purpose and reason in all that you do and the choices you make. We are so much more than our body! How exciting! 🙂

Gumboots and Grammar


The images on the big screen were hitting very close to home. I had to swallow hard to keep back the tears and a suppressed moan constricted my throat. Memories of my own history with Chronic Fatigue Syndrome had been stirred up, but the deepest resonance was to the immediate.

On the screen, dr. Alice Howland (Julianne Moore – Still Alice) was delivering a moving speech about her daily struggle with the art of loss, describing her path from being renowned professor of linguistics to facing the debilitating effects of early onset Alzheimer’s Disease.

“Good morning. It’s an honor to be here. The poet Elizabeth Bishoponce wrote: ‘the Art of Losing isn’t hard to master: so many things seem filled with the intent to be lost that their loss is no disaster.’ I’m not a poet, I am a person living with Early Onset Alzheimer’s, and as that person I…

View original post 1,370 more words


10 comments on “ICU

  1. I found this very moving Rob and related so much. I still have the good fortune to be living with the same partner for over 30 years, but this, too, presents its own challenges as I gradually move further away from what I used to be able to do and now can’t. I think John, my husband’s journey, is just as difficult as mine in many ways as he watches me, for example, become frustrated sometimes when simply attempting to take a lid off a jar and refusing help until I’m certain I can’t do it. He wants to fix it all for me, but we do our best even if occasionally we come to blows with the frustration and sadness of it all.

    I need to lean these days, on objects or people and John is the rock that helps me feel safe, and, of course, the odd chair or table 😊

    Liked by 2 people

    • Ah, Christine – can so relate! Thank you for your comment! The demise of my marriage (after 16 years) was partly due to my changing – “you are not the man I married”! As you say, often so difficult for the partner to watch and try to know when and when not to help (especially a man with our need to ‘fix it all’!) – it’s a whole new ball game for any relationship and both have their own reactions and journey through it, as you say!
      Well, as long as we can keep the humour and see the light side as much as possible (I often say I wish I could carry a video camera – would have definitely had some youtube hits! :)) and grab the rock or the chair as we need – and good for John – talk about feeling like part of the furniture! 🙂
      Pleased you have the support you need.
      Hope you have an awesome day!

      Liked by 1 person

    • Hi Elle, it is Micelle who had the Chronic fatigue which is now in remission (apparently it does that). Over the years she was affected, she had a support structure in place that was able to step in during her ‘brain fog’ periods and when she needed to rest – so she managed it on a day to day, moment to moment basis – much like I manage my MS! 🙂

      Liked by 1 person

I'm Listening...Would love to hear your comment!

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s