Thursday, 9 August 2018

A big birthday with M.E. and someone who really gets it | 09 August 2018

 


Helen Hyland, Fundraising Manager, ME Association.

This isn’t really a Fundraising Feature – but it is rather special and written by someone who was able to ‘see beyond the pictures posted on Facebook’ and show some real understanding of what is means to have M.E. It was a message that reduced many of us to tears…

Clare Bromley had hosted a hugely successful screening of Unrest in Selby earlier this year and raised over £2400, because she wanted to tell more people about M.E. and how it devastates the lives of people like her daughter Isobel.

Isobel celebrating her 18th birthday.

Three months later, and Clare was organising an event of a totally different kind – a special 18th birthday celebration for Isobel.

Hot tub and friends

Clare wrote, “We celebrated as best we could. We hired a hot tub so she could enjoy having some friends over on the Friday evening for a couple of hours and family on the Sunday afternoon. It’s taken its toll but she had a fab weekend.”

Her friend Heather then left the following message on her Facebook timeline. One that she was happy to share, and which received a great deal of appreciation from others with M.E.

Heather said, “l looked through the many pics taken at the 18th celebrations and thoroughly enjoyed seeing family coming together to celebrate a milestone in your young life. I was sat smiling, reminiscing my own celebrations when something hit me…

“I went boozing with my mates, had a fabulous, if drunken, weekend of laughing, walking and being daft. I didn’t see this in your pics. I saw a young woman enjoying herself in a hot tub, smiling and having fun. I saw this person looking full of energy and life, looking absolutely the height of health and youth.

“Then l thought, l wonder just how much planning went into this weekend. I wonder how much rest and sleep was needed to enjoy the hot tub?

Isobel and friends enjoying a hot tub.

Reality of life with M.E.

“I wondered just how much of the wonderful colour in the face l saw was well placed make up?

“I looked in particular at the video where candles are blown out and l stopped. I realised those candles took some extinguishing. Hmm…

“I wonder how that young woman is now?  I remember that my next day, I was at work still giddy from all the fun I’d had.

“But is Isobel at work? Is she giggling with her friends? Is she gushing how fabulous her day was and how grown up she now feels? Dreaming of this magical future ahead of her, as l was?

“No, l suspect, she is lying in a darkened room, unable to move or even talk and exhausted beyond what l will ever know.

“I understand that M.E. is something which has many forms, not just tired and can’t stand the light. I know that this precious young woman will not face today as l did all those years ago.

“I know how hard her parents and family will have worked to ensure she had a brilliant day and l also know they will always support her when needed.

“And I know for a fact that so many people are still unaware of the extent this dreadful illness affects families like yours, Clare.

“They may see the pics and think, ‘nowt wrong with her’. They do not see beyond that and do not know what this young woman is enduring in her young life.

“For me Clare, seeing the joy on her face and that of her family was wonderful. Isobel is an inspiration to all. And others celebrating this stage of their life who moan if they break a nail or feel rough should take a leaf out of your book.

“Never give up. Fight daily but know when a day is not a day to push yourself.”


The ME Association

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from ME Association
https://www.meassociation.org.uk/2018/08/a-big-birthday-with-m-e-and-someone-who-really-gets-it-09-august-2018/

from https://www.meassociation.org.uk

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