Over the past 6 years I have often wanted just one wish, to have my family healthy and to be able to live normal lives, just like everyone else. Am I selfish? Possibly I suppose, but I am sure that everyone with a sick family member would wish for the same.
Yet, and I surprise myself here, I wouldn't wish that ME had never entered our lives, the cancer - yes in a heartbeat - I would wish it away and that my mother was with us still. But the ME - although I know it sounds crazy, I wish it gone but not that it had never been. Why? - Because it is through the girls becoming sick that we have found strengths within ourselves and a intimate closeness as a family that we most likely wouldn't have discovered otherwise. We have also met some wonderful people within the ME community that I hope will remain life-long friends. The girls have also found they have talents which most likely would have laid undiscovered had they been able to live a full and normal healthy life in mainstream education, following a full social life and the ordinary curriculum offered within the school. It was being forced to lie in bed and not being able to have the energy to do anything much at all that they discovered their artistic talents. These talents could quite easily become their living as they get older.
So, what is the point of this blog - it's for me to share my hopes, dreams and desires - our lives with chronic illness, the peaks, the troughs - good times and bad and a place to think aloud and share my ideas with you and call for your support when I can.
I participated in the "naked" selfie for Breast Cancer Awareness - I have sadly been aquainted first hand with a number of close family members and friends who have suffered from this disease - some won and some lost their battle. My mother, grandmother and more close family and friends also suffered from other forms of cancer - again some lost and some won their battles - so cancer has played a major part within my life.
So where is all this going - the talk about cancer awareness? Well, there have been discussions within the ME community about ways in which to raise awareness and funding for Invest in ME and biomedical research into treatments - it was decided that we could jump on the selfie bandwagon and adapt it a little - to take two photos side by side - one depicting your ME (or if you are a healthy friend/supporter how you are first thing in the morning) and then one of you dressed up, with make-up on if you wear it and your image that you show to the world (for ME peeps this is usually their "mask"). Then to ask for folk to send a donation to a 70070 text number to help raise funds towards research, also asking ME and well friends to join in and participate too.
Now, for us as a family we have a dilemma - we are walking as a family as a team for the Walk for ME 2014 event, raising funds for Invest in ME Research. PLUS Keisha has set up her fundraiser to cut off all 45 of her dreadlocks and dye what is left of her hair blue for Invest in ME too. THEN there is another text code for the selfie event, all 3 have funds going directly to Invest in ME research though - so what do we do?
My proposal is - for my friends, family and anyone else who wishes to support us or participate to take their selfies and to put up their photo and the details of our two fundraising text codes (one for our walk and one for Keisha's event). Then to text either £1 or £2 to each code - to make a total of £3 (so the same total as if you had texted for Balls or BEAT for the testicular or breast cancer selfies).
My photo is showing me asleep - I hope it portrays my exhaustion, I am currently suffering from what is presumed stress induced illness and depression due to the ongoing health issues within our family - as I said earlier 6 years and counting. If this illness does not improve then it could well end up, several months down the line, being a diagnosis of CFS/ME - if that is the case it would bring the number up to 3 out of 5 of us in our family having ME. The second photo is of me all washed and dressed smiling and showing the world that we're okay and coping - really! As always, I have my faithful friend, my gorgeous 4 year old Border Terrier dog, Taylor (he was given my maiden name, in memory of mum) with me.
The text codes for donations are:-
So back to my one wish, *closes eyes* I wish for a cure for ME and my family to be well again.
Please could you join us in getting this ME Selfie to go viral, to raise funds for research to find a cure and increase awareness about this illness.
That is my wish