topic Re: Walk for ME in Family, Home and Garden

Walk for ME

*elphaba* — Thu, 11 Apr 2013 15:10:03 GMT

Some of you know that my sister has ME/CFS.

I'm joining in the Walk for ME during ME/CFS awareness week (6-12th May) to raise money for biomedical ME research. For too long this disease has been misdiagnosed, mistreated and sidelined, and misunderstood by the general public.

I'm walking as much to banish ignorance about the condition as I am to raise money so would be grateful if people just read the below (I'll put it in the first post to avoid a huge OP).

I won't put the link, but I have a Just Giving page which can be found on the site as 'page for Bev and Nim' and perhaps if after reading you feel so moved to pop over there.....well, I'd be grateful.

Re: Walk for ME

*elphaba* — Thu, 11 Apr 2013 15:10:55 GMT

My little sister has ME/CFS, as does a friend of ours, Nim.   Its sadly still a mysterious, debilitating condition that causes severe fatigue, 'brain fog' (inability to think and communicate clearly) pain and myriad other problems. Its like my sister has flu every day of her life.
Some days are good days - she can potter in the garden, or go with someone to the supermarket (never able to go alone).     Some days walking from her bed to the bathroom, a matter of a few feet, takes herculean effort and leaves her shaking with fatigue and too ill to eat, read, watch tv or do anything but sleep a sleep that brings her no overall rest.
If she overspends her energy on a good day to do something like visit a friend or clean the house or take a carefully planned family trip to the beach (as long as she can sleep in the car and rest continually during the day) she invites a bad day the next.    She calls it 'running out of spoons'. Google 'spoon theory' for a visceral illustration of what its truly like to have ME/CFS and similar life-stealing conditions.    Healthy people have a large supply of daily spoons (energy) - so many we don't have to think about them for normal day to day life.   Bev and Nim have a finite supply and they risk running out just by having a shower in the morning, walking downstairs and making a sandwich. Using energy to cook a healthy meal means they might not have the energy to eat it.   They have to make choices constantly.
Borrowing an extra 'spoon' or four to do something Bev wants/needs to do means she will have less for the next day. She does that much too often, but its the only way she can have at least a glimse of a life that healthy people take for granted.
She would love to walk along the river, perhaps take a picnic, a small pleasure most of us wouldn't think twice about but is denied to Bev, Nim, and others like them.
Research is essential to find out why and how ME happens.......and what can help.

I am walking for Bev and Nim and all those affected by ME/CFS because they would love to be able to do so themselves, and moreso they all need something that is rarely given to ME sufferers - respect, support and understanding and the assurance that people are fighting for them.

I aim to do my walk on 6th May at the start of ME week.

Thanks for reading :-x

Re: Walk for ME

ilove2patch — Thu, 11 Apr 2013 15:34:19 GMT

I would love to donate a small amount Elph but there is a minimum on the Just Giving page which is more than I can afford. Can I send you something by PP?

Re: Walk for ME

captainbovine — Thu, 11 Apr 2013 15:44:18 GMT

thanks for posting that elph...it must be terrible to juggle spoons for everything you do.

I hope you have a good walk.....

are we donating?:-)

Re: Walk for ME

*elphaba* — Thu, 11 Apr 2013 16:51:46 GMT

Oh bless, Maggie, thank you that would be very much appreciated.

I didn't know it had a minimum donation amount :O:-(

Capt I'm trying very hard not to twist peoples arms up their back 😄 😉

Re: Walk for ME

merc1_clocks — Thu, 11 Apr 2013 16:57:11 GMT

I so understand... my wee brother was diagnosed last year ( aged 42 ) one week before his marriage.

Thank goodness that in Natalie, he has a wonderful, understanding wife.

My son ran the London Marathon last year, & raised £4000 for MS research.

I donated a LOT at that time, so please understand if I can't donate as much as I would like.

Thank you elph, for bringing it to our notice xxx

Re: Walk for ME

fluffypenquin — Thu, 11 Apr 2013 17:03:32 GMT

Hi Elph:-) Well done - hope this helps to make people "aware". Enjoy the walk:-)

Re: Walk for ME

ilove2patch — Thu, 11 Apr 2013 17:10:40 GMT

Let me have your PP address by proper email Elph.:-)

Re: Walk for ME

fluffypenquin — Thu, 11 Apr 2013 17:13:06 GMT

Hi - I "THINK" on the Just Giving page you can pay as much or as little as you want - there are some preset boxes to choose from and there is one that you can put your own amount in.

Re: Walk for ME

*elphaba* — Thu, 11 Apr 2013 17:20:51 GMT

I so understand... my wee brother was diagnosed last year ( aged 42 ) one week before his marriage.

Thank goodness that in Natalie, he has a wonderful, understanding wife.

My son ran the London Marathon last year, & raised £4000 for MS research.

I donated a LOT at that time, so please understand if I can't donate as much as I would like.

Thank you elph, for bringing it to our notice xxx

Merc, this is for ME, not MS (not sure if that was a typo) Myalgic Encephalomyelitis, otherwise known by the innaccurate and dismissive 'Chronic Fatigue SYndrome'. Just thought I'd better make that extra clear. It has many similarities with MS, and with Parkinsons, Lupus, RA etc..... How wonderful of your son to do that :-x

Pennies help - really they do. And if the site won't allow a smaller amount then I can by PP and send it on myself. Only IF people really want to and can spare it. Even 50p may be a struggle to part with these days, I know only too well

Re: Walk for ME

cookiecookuk — Thu, 11 Apr 2013 17:26:32 GMT

hi elphaba i to suffer from ME /CFS and know what it is like to suffer this way although i am not as bad as some people but have suffered about 7/8 years now.i will be going over to the giving page.good luck to you:-)

Re: Walk for ME

*elphaba* — Thu, 11 Apr 2013 17:35:08 GMT

Ah Cookie, not you too 😞

Consider me to be walking for you too then :-x

Thank you, and others who have been over there xxx

Re: Walk for ME

*elphaba* — Thu, 11 Apr 2013 17:39:59 GMT

Meant to say, Maggie I did email but forgot to actually say that that addy will be fine for PP

Re: Walk for ME

ilove2patch — Thu, 11 Apr 2013 17:55:17 GMT

Thank you Fluffy. I had another look & have donated.:-D

Re: Walk for ME

merc1_clocks — Thu, 11 Apr 2013 19:12:34 GMT

Sorry elph...my mistake 😐

I know ME can be such a debilitating illness 😞

Re: Walk for ME

rainydaywoman11 — Thu, 11 Apr 2013 22:18:58 GMT

Elphaba, I have to thank you for bring the 'spoons theory' to my notice. It has helped me a lot and even my wee Dad uses it as a reference when he calls to ask how I am.

I should add it is now used in his household (by my Stepmum, Yorkshire woman, mental but lovely), as in - 'I've run out of *insert expletive* spoons, do it yourself' :^O

I can find several ME sites, can you PM me with the one I should be looking at to donate. I too know someone ((B)) with ME and it is not nice. Give your wee sis a hug from me and thanks for all the invaluable help and advice you have given me :-x

Re: Walk for ME

ilove2patch — Thu, 11 Apr 2013 22:24:00 GMT

YHM Rainy.:-)

Re: Walk for ME

geranne28 — Fri, 12 Apr 2013 17:07:51 GMT

This has been listed in 'the other place' by Fluffy so I came to sponsor Elpha.

I can't find the link to donate to though. Ringo would be happy to walk alongside Elpha in spirit - and he will give one week of his pocket money to help people who suffer from ME. I am a 'chronic fatigue sufferer' and I cannot describe how debilitating and frightening it is.

Can someone message me and I'll make sure the link for sponsorship gets to kindly peeps in the 'other place'.

Re: Walk for ME

ilove2patch — Fri, 12 Apr 2013 17:19:48 GMT

You have an envelope Geranne.

Re: Walk for ME

fluffypenquin — Fri, 12 Apr 2013 17:49:30 GMT

Link done:-) in t'other place:-)