…my lovely teenage daughter, Jess.
Hello!:] I am fourteen years old. I love singing, dancing, playing guitar, chatting to my friends, seeing them and spending time outside. I seem like a normal teenager don’t I? I am, sort of. I suffer from an invisible illness called ME/CFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome). It’s hard to deal with at this age because your friends are out and about enjoying themselves and you’ve slowly faded away because they don’t understand, or you can’t get out to join them. I suffer from severe ME/CFS which means I have light, smell and noise sensitivities, horrible pain that medication doesn’t always help, headaches/migraines, nausea, weight loss, fatigue that sleep doesn’t help with and ‘brain fog’.
Jess was too ‘foggy’ to finish writing this blog post so I’m going to carry on for her. It’s ME Awareness week from 8-14 May, hence this post. The focus of the awareness week this year is ‘Missing Moments, Hidden Lives’. Jess deals with this awful illness in a very brave and inspiring manner but there are many things that she has had to miss out on which are very painful for her (like my brother’s wedding). We don’t want this to be a miserable read for you so we won’t bore you with all the details here. Here is a link to a review of a Radio 4 Woman’s hour interview Jess did in 2009 (proud Mum moment!)
We were very lucky to be pointed in the direction of a fabulous charity when Jess was first diagnosed 3 years ago. AYME (Association of Young People with ME) offer various different services to children, young people and their families. Their online message board was an absolute life-saver for Jess when she was bedbound and has continued to be a source of support to her in her current predominantly housebound state. If you’re interested in finding out more about the work of this charity their website is fairly comprehensive including information about the illness.
Congratulations if you’ve managed to bear with me through this text heavy post. I’ll hopefully be back later in the week with some crafty goodness 🙂 Just before I go I would like to point you to another blog with a rather gorgeous quilt up for grabs (think Modern Relief Japan with a twist)!