Saturday, 10 December 2016

#BeHuman: humbug

For all the Humbuggers out their we are starting a story board about living with MS at Christmas. #BeHuman

Somebody let us know yesterday what the true meaning of humbug is. 'Scrooge uses humbug to describe people who speak of love and charity but are being insincere. It is a pretence of the goodwill of the festive season and Scrooge does not want to be a part of the pretence'

At a work drinks party last night we were debating whether or not it was appropriate for the MS Society to use fictionalised stories about people with MS at Christmas to raise money. What do you think? I am sure you have enough of your own stories to fill a book. 


We are always touched by the personal stories you as a community are prepared to share with us; the following are three examples from yesterday.

...... "I've been indoors for 3 weeks because of a bad exacerbation. But I have a loving husband and son caring for me. I can walk somewhat, not drive yet. There are so many others who aren't as blessed as me, who need our love and care and, of course, money to help toward that."....

...... "My aunt was bedridden with MS by 50, and could only move her head by 55. She lived like that until she was 83. She didn't want to die though, she loved seeing her family and watching old films. I would love her strength and will."......

...... "My grandmother died from breast cancer in 2012 because she was too embarrassed to tell anyone. The doctors, who were limited in what they could after she presented to them finally, were very kind and caring, to both her and my dad.

Before my partner was formally diagnosed with breast cancer, her oncologist had told her that it was a sweat gland (atypical presentation and she was too young). When it became evident that it was cancer, his guilt and quick action were equally obvious and saved her life (the aggressive cancer hadn't spread during the delay and from the date on diagnosis, she was operated on in the public system literally the next day).
I can't imagine what life would have been like if the end to that story was like my grandmother's.

We are all shaped by our experiences. I agree, let's not forget humanity as we sing. Try and find some time away from MS too, for the good of yourself and MS.".....


Can I suggest starting a story board about how you experience Christmas? It will help make the community aware of the issues that arise from living with MS and more importantly it will help the MS Society with their STOP-MS fund raising campaign.


5 comments:

  1. "At a work drinks party last night we were debating whether or not it was appropriate for the MS Society to use fictionalised stories about people with MS at Christmas to raise money. What do you think?"

    Please don't, that's a terrible idea. Raising money is okay but fictional stories to increase donations is a no-no. Stick to the facts to raise awareness and money.

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  2. My story - I am thirty-eight and live alone in South-West London. May partner left me 6 years ago when my MS affected our social life. I was medically retired 3-years ago. I now use a mobility scooter. I find it too tiring to travel to the North-East to spend Christmas with my family. My sisters house is not really disability friendly. I will spend this Christmas helping out at our homeless shelter and eating lunch with people less fortunate than me. After lunch I will go back to my flat and watch telly. I don't know what I would do without the BBC at Christmas.

    TeamG I hope you all have a wonderful Christmas and thank you for all your tireless efforts.

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  3. I am 32 and have had MS for 6 years. I have been on Tysabri for over 4 years and I am well and almost normal. I am married, have two children and work fulltime. I will be spending Christmas with the family and friends in the country. Apart from monthly infusions I would like to think I don't have MS. Thank you Tysabri.

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  4. I'm a humbugger! I've lived with MS for almost a decade and a half and have seen fundraising effort after funraising effort with the promise of stopping MS or repairing the damage. we are a 3 weeks away from 2017, and the recent report of the man with MS who headed to dignitas or the first post above show the real position many face with this disease. One treatment which stops disability getting worse (not slowing down by 25%) is what I'd ask of Santa. He can't do any worse than the xx'xxx researchers pumping out MS papers which cure mice, but do nothing for us humans. However, I don't bear grudges. 2016 has been a monumental year with Brexit and Trump. The liberal elite who have milked the system have seen the average joe rise up and make a statement. Happy Christmas (not Happy Holidays) to Prof G, Prof B, Welsh Mouse, and the other happy campers of Team G.

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  5. I have had MS for close to 30 years and need a wheelchair. I will be spending Christmas amongst my family in my own home. I am not too disabled not to enjoy Christmas. I am very grateful that I still have a loving wife, two children, grandchildren and an extended family who care about me. May be I am the lucky one?

    ReplyDelete

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