I have managed to collect a variety of poetry written by those suffering with ME/CFS as well as other Chronic Illnesses from all over the world.
This one is extra special as the artist has turned is poem into the most beautiful and moving song, I have literally listened to this over and over again, it is honest and realistic rendition of how many of us feel
by Ren Gill
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I have managed to collect a variety of poetry written by those suffering with ME/CFS as well as other Chronic Illnesses from all over the world.
By Ainslie Eccleston
I have a disease that nobody sees,
I cry to the heavens and fall to my knees,
I’ve tried and tried a thousand times,
To crack the code, to find reason and rhyme,
Years go by and I learn to adapt, Continue reading
I have managed to collect a variety of poetry written by those suffering with ME/CFS as well as other Chronic Illnesses from all over the world.
By Ainslie Eccleston and Lachlan Conway
I have a disease that nobody sees
I cry to the heavens and fall to my knees
I’ve tried and tried a thousand times
To crack the code, to find reason and rhyme
Years go by and I learnt to adapt Continue reading
One of my spoonie friends wrote about her CFS/ME journey as a comic strip and I absolutely love it, it talks about her journey from the very beginning to right now, she is by no means recovered but her functionality has improved and continues to do so as time goes on.
Many of us with these illnesses and many other chronic conditions find comfort and release in being creative for me its origami and finger painting.
I find a sense of peace comes from doing origami and finger painting is well really dam fun that type of primal child type fun!
Others who are more talented create pieces about their illness in the forms of pictures, abstracts and even toy making like below.
Averyl Ritchie is a wonderful artists I met in a CFS/ME group.
Her Corrupted Collection goes through the different stages of how she has experienced CFS/ME and it is a very beautiful depiction of what I think many of us have gone through.
This is how Averyl describes losing her cognitive skills – which is probably the worst part of CFS. Her brain is foggy, can’t think clearly or retain information. You forget words and conversations moments after they are spoken and drop everything you touch. This is invisible to others, and they can only see YOU, and not what’s happening inside. This is dedicated to a friend who experienced similar problems.
As part of CFS/ME Awareness week a group of us from the CFS Health Centres came together and thought of all the words we associated with having this condition that effects approximately 17 million people world wide, one of the members so eliquently created 5 pieces of word art to illustrate the different aspects of CFS from our point of views.
Symptoms
In previous posts I have talked about various symptoms of CFS/ME but this illustrates just how many there are, but also some of the consequences of these symptoms, like the loss of relationships with friends and family, jobs and even ones sense of self.
Along with feelings of hopelessness, the fear of how long you are going to feel like this and if it is ever going to get any better.
CFS/ME is a very real and debilitating and often life shattering chronic illness.
Some of my spoonie friends from the CFS Health Centre have created a number of projects to raise awareness of this horrible condition.
The first of which is a great project where several of us shared a pictures we had taken and what they meant to us.
Mine was a picture I took when I was in Sri Lanka just before I got really sick:
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Tomorrow kicks off CFS/ME awareness week and I will be posting each day mainly creative things that us suffers have created to raise awareness.
But to kick off the week I thought that this would be a great way to get the ball rolling, in one of my online groups we created a document to give to friends, family or anyone else who it might be useful to; of things we thought that those around people with chronic illnesses could do to help make our lives easier.
It is hard for us suffers but it is really hard for those around us too, often those around us feel helpless and don’t know how they can help, this is a list (obviously not exhaustive) but to get people thinking of the little things they can do to help.
In my previous post :What activity management means to me in dealing with my CFS/ME I talked about the methods that I use for activity management to ensure I pace myself. Carefully planning out my activity for the week.
But things don’t always go to plan, inevitably things pop up that you didn’t plan for so do you deal with these and try to avoid the push crash cycle?
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Gluten Free Adventures & M.E 
