Using words for awareness

13183131_963129555672_167577243_n Hello readers, well it’s here again, CFS/ME Awareness Day and I’m absolutely stoked (and struggling to type properly because of my shaking hands) to share that I wrote an awareness raising article for the website Mamamia.  Here is the link, please have a read. In the mean time I thought I’d share on here two poems that I’ve written in which I have tried to describe CFS and all the feelings it evokes. 
I normally try to keep things positive on this blog, but that doesn’t mean I don’t have dark days; I certainly do. They are unusual but when they hit it is so hard to deal with. So these poems are from two days when it was all feeling like too much. Writing out my feelings in a creative way almost always makes me feel better in the end, and now I can share these poems with you, knowing my mindset is back on track and that I am in the road to recovery. 

Microsoft Word - Illness Poem CFS S Mackenzie.docx

………………………………………

Microsoft Word - Illness Poem CFS S Mackenzie.docx

Advertisements

7 thoughts on “Using words for awareness

  1. I came over from your article on Mamma Mia. Thank you for sharing your experience. My partner has lived with CFS for almost 10 years and I felt every one of your words.

    Liked by 1 person

  2. Thank you so much for this article! I have been struggling with CFS for ten years now. In that time I have tried and given up university studies 3 times (I wanted to be a writer and do travel/sports journalism) stopped being as active as I used to be (which is hard when you did competitive gymnastics and were studying to also be a personal trainer), I’ve had friends give up on me, family support but also get frustrated with me, a boyfriend cheat on me because i was ‘too boring’, and I have fought back from the brink of very dark suicidal thoughts.
    Thank you for your weds. I felt as if I wrote them myself. Thank you for giving al of us a voice for CFS and getting the word out. I am glad to know there are others like me and that there are support groups. I he no idea they existed.
    You have given me hope. Thank you.

    Liked by 1 person

    • Oh wow kristen, thank you for comment, I’m so sorry you’ve had such a hard time, I wanted to write this for the exact reasons you say. Wishing you all the best, and thanks for commenting xx

      Like

  3. Susie, as a fellow sufferer of CFS, I can hear my voice in your words. I’ve had CFS for over 20 years (starting off from a bout of Glandular Fever). Since then I’ve have many ups and downs. You won’t always feel that your life is on pause. During this time I’ve been able to meet and marry a wonderful man, have a son and change jobs to more suit my capabilities (from secondary teaching – too stressful – to being a card designer for Practical Publishing – working on commission basis, I work when I’m able but would starve if it was my only source of income.) I’ve also progressed from CFS to Hashimoto’s Syndrome (autoimmune disease of the thyroid) to peripheral neuropathy in my feet, legs and hands;’ to Type 2 Diabetes. Some times I feel great and want to do heaps of what’s been piling up around the house; but I know I’ll pay for it later. Other times I feel like giving up and not even trying because it’s just too d… hard! Without CFS, my life would be perfect! 🙂

    Just on a side note, a group of researchers, led by Professor Sonja Marshall-Gradisnik, from Griffith Uni QLD ( https://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases ) has identified specific markers on white blood cells that has the potential to be used to help screen and diagnose patients with CFS/ME using blood test. I was part of this study until I developed diabetes. Sonja has said once they find out what causes it, they can then work out how to help sufferers get better.

    I hope you start feeling better and that life revs up a bit for you. 🙂

    Like

Leave a Reply

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

WordPress.com Logo

You are commenting using your WordPress.com 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