Introducing…

…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)!

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11 thoughts on “Introducing…

  1. Lynne (Lily's Quilts) says:

    Jess, you poor, poor thing and what a wonderful post you wrote. I cannot imagine how hard it must be for you at your age not being able to go and do all the things everyone else is doing. It must be very isolating and lonely. You write so well for someone so young – I have two boys your age – nearly – (12 and 13) and I don't think they could write as well as you wrote that. I have two friends who have come out of the other side of ME and I hope there is light at the end of the tunnel for you some day soon. Lynne XXX

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  2. RoseBlackout says:

    Hello:)

    I'm a bit braindead at the moment but just wanted to say thank you for the lovely comments. 🙂

    I have seen the light at the end of the tunnel briefly so I know I'll get there again soon. 🙂

    Jess x

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  3. Judith says:

    Hi Jess, well done on what you managed to write. I was diagnosed with ME when I was 19. The first few years were really tough, especially as I was living away from home. I realise that ME can be v.different for different sufferers but I want to give you hope for your future. I'm nearly 40 now, am married with 3 kids. I still don't have the stamina that I would always like, but I live a full life and feel that as long as I'm sensible, I will remain ME free. I pray that you will soon see the light at the end of this tunnel and your body will heal and strengthen and you will have a bright and exciting future. Love Judith xo

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  4. Catherine says:

    Good luck to Jess, can't imagine how hard that must be. My youngest daughter is dancing in a variety show tomorrow night to raise funds and awareness for ME – hopefully there will be a cure soon x

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  5. Nellie's Niceties says:

    Jess did a nice reply to this thread but it appears to have vanished into the ether! Thr crux of the matter was thank you all for your lovely comments 🙂

    Catherine – How lovely! I hope she enjoys it 🙂

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  6. Judith says:

    I know I'm a bit late getting this message to Jess, but I did send her a comment on 13th May which was when we had all the blogging trouble and when I revisted here my comment had vanished. All I said was that she is a brave & talented girl. I was diagnosed with ME when I was 19, but now, nearly 40, married with 3 kids, I live a full and happy life. I still have to manage my energy levels as stamina is not always great, but I don't feel limited. I am praying that Jess will soon see a light at the end of her tunnel into a bright and full future. Judith xo

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