Hi everyone,
I wanted to let you all know about a charity event I'm taking part in during M.E. awareness week this month. On the week of the 12-18th May, several people with ME, myself included, are shaving our heads. We're doing it to raise funds for two ME charities, my personal favourites: The 25% Group, and Invest in ME. :)
I want to ask all my followers here to really get behind this event, by sponsoring us, of course, if you're able.... but also by sharing this event with friends, family, and your social networks, or posting about it on your blogs and websites. We really want to use this event to raise awareness of ME, and of its affect on the lives of those living with it! We hope that such drastic action as shaving our heads (especially given that most of us are girls!!) will inspire people to read about the truth of ME, rather than just accept what they read in the media. I do feel that, just possibly, the tide is beginning to turn here in the uk, there having been more positive articles in the press and more biological research widely(ish) publicised than I've ever seen before, over the last few months (though they are still disproportional to the negative ones, sadly). I can only hope that this positive trend will continue, and grow, and that more people than ever will learn the truth, and get behind ME sufferers and our families, to change the way we are treated in this country! I (and others taking part) have been struggling to find the energy to promote this event in any way. As you may have guessed from my online absence over the last few months, I've been particularly ill recently - so every second i spend working on this is affecting me negatively. As a result, anything you can do to spread the word, or bring in more sponsors, just seems like a huge gift to me, as its one less moment I need to spend pushing myself past my limits to get things done!!
Below, you can find my official Big Shave blurb, which you are welcome to post on your own sites! At the bottom of this post, you'll find all the information you'll need to securely donate to this cause. :) You can also visit the official Big Shave website at: http://www.thebigshave2013.org/ where you'll find information about everyone taking part, about M.E. itself, the charities we are sponsoring, and about how to donate to them.
If you're feeling brave, and wish to join us In shaving your head, there's still time to get involved! Just contact us at thebigshave2013@gmail.com and Amy (Or AngelSolace, as many of you may know her) will get you all set up!
"Hello, my name's Susannah Grace, I'm 37 years old and bed-bound with severe M.E. I first became ill in 1996 after a bad case of glandular fever. I was desperately ill for 6 months, finally returning to my training as a children's nurse, though every small effort I made was excruciating. When I completed my training, I began work as a neonatal intensive care nurse (which I absolutely loved!), and continued working there, at first full time, then gradually dropping my hours as I became sicker.
Several years later, I was hospitalised with an infection which caused my M.E. to relapse severely & I became housebound. I was managing to leave the house only a couple of times a year, in my wheelchair, with my carer until a few years ago when i became so ill that I became completely bed bound.
Over the past 17 years of my illness, I've come across an awful lot of misunderstandings and prejudice about M.E. in the general population, the media, and most disturbingly, within all the medical professions. I wanted to do something big to try and raise awareness and to promote understanding of this illness that has robbed so many of their lives. The Big Shave seemed like a brilliant way to do that, particularly as the charities being supported by it are the exact ones I would most like to help. This past year my condition has deteriorated, but when I heard from Amy about her plans for the Big Shave, I was determined to take part! It's something I can do from my bed, despite all my limitations!
As someone suffering from a severe form of M.E. I have been a member of the 25% M.E. group for some time now. They were one of the first groups I had encountered online when I first tried to find others who were bed-bound like me and the group had a profound impact on me. Invest in ME have also helped me hugely. In fact, this year they came to my aid when I was having problems with social services in getting more help with my care situation. They took the time to send a letter and information to my social work department to help them understand my situation! I really want to support these organisations which have made such a huge impact on mine and many other people's lives. These charities have very little money coming in compared with others and really need our help to be able to continue providing vital services for people all over the country who are suffering from this illness.
I used to have pretty awesome hair and I loved getting it styled in different cuts and colours (red usually!). Nowadays, I'm not well enough to get to the hairdressers - all I can do now is just literally chop off my ponytail every so often to stop it getting too long! In actual fact, trying to keep my hair clean is a huge struggle for me, (to the point where I have ended up with dermatitis on my scalp) so in some practical ways, this move will really make life much easier. I have heard that some people bed-bound with severe M.E. have chosen to shave their heads because they just couldn't manage to keep it clean... so the Big Shave just seemed to be a perfect act of solidarity to those who are even sicker than I am!
My mum's lovely hairdresser, Alyson Tunstall, (who also shaved my mum's hair when it started to fall out during chemo) has agreed to come to my house to shave mine all off for the Big Shave! On Tuesday 14th at 8pm. (Well, actually, I'm getting a buzz cut, since shaving would irritate my skin too much. I'm quite nervous about it - it's a huge step for a girl to take, especially, but am totally going for it to raise as much money as I can for this brilliant event... So please give generously to these charities! There is some information about M.E. on this site (click the 'About ME' link at the top of the page!) - please read it and share it with friends, to help us raise awareness and promote understanding, too!
The last 9 years particularly have been a great struggle, but over that time, I've managed to keep hope alive, and found that, that is the greatest survival mechanism one could foster! When I'm up to it, I like to work on my blog (www.thethingwithfeathers.me), where I write about living with very severe M.E. to raise awareness and to try to offer hope and encouragement to others struggling with chronic illness. If you're interested in learning more about M.E. or in hearing more of my story, please feel free to check it out!
Thanks so much for your support, it really does mean the world to me, and it's going to help so many people!"
Thank you all so much for your support, you have no idea how much I appreciate it!
I wanted to let you all know about a charity event I'm taking part in during M.E. awareness week this month. On the week of the 12-18th May, several people with ME, myself included, are shaving our heads. We're doing it to raise funds for two ME charities, my personal favourites: The 25% Group, and Invest in ME. :)
I want to ask all my followers here to really get behind this event, by sponsoring us, of course, if you're able.... but also by sharing this event with friends, family, and your social networks, or posting about it on your blogs and websites. We really want to use this event to raise awareness of ME, and of its affect on the lives of those living with it! We hope that such drastic action as shaving our heads (especially given that most of us are girls!!) will inspire people to read about the truth of ME, rather than just accept what they read in the media. I do feel that, just possibly, the tide is beginning to turn here in the uk, there having been more positive articles in the press and more biological research widely(ish) publicised than I've ever seen before, over the last few months (though they are still disproportional to the negative ones, sadly). I can only hope that this positive trend will continue, and grow, and that more people than ever will learn the truth, and get behind ME sufferers and our families, to change the way we are treated in this country! I (and others taking part) have been struggling to find the energy to promote this event in any way. As you may have guessed from my online absence over the last few months, I've been particularly ill recently - so every second i spend working on this is affecting me negatively. As a result, anything you can do to spread the word, or bring in more sponsors, just seems like a huge gift to me, as its one less moment I need to spend pushing myself past my limits to get things done!!
Below, you can find my official Big Shave blurb, which you are welcome to post on your own sites! At the bottom of this post, you'll find all the information you'll need to securely donate to this cause. :) You can also visit the official Big Shave website at: http://www.thebigshave2013.org/ where you'll find information about everyone taking part, about M.E. itself, the charities we are sponsoring, and about how to donate to them.
If you're feeling brave, and wish to join us In shaving your head, there's still time to get involved! Just contact us at thebigshave2013@gmail.com and Amy (Or AngelSolace, as many of you may know her) will get you all set up!
 |
| My Best Day of 2012 - One of Few. |
Several years later, I was hospitalised with an infection which caused my M.E. to relapse severely & I became housebound. I was managing to leave the house only a couple of times a year, in my wheelchair, with my carer until a few years ago when i became so ill that I became completely bed bound.
Over the past 17 years of my illness, I've come across an awful lot of misunderstandings and prejudice about M.E. in the general population, the media, and most disturbingly, within all the medical professions. I wanted to do something big to try and raise awareness and to promote understanding of this illness that has robbed so many of their lives. The Big Shave seemed like a brilliant way to do that, particularly as the charities being supported by it are the exact ones I would most like to help. This past year my condition has deteriorated, but when I heard from Amy about her plans for the Big Shave, I was determined to take part! It's something I can do from my bed, despite all my limitations!
 |
| A Normal Day for Me. |
I used to have pretty awesome hair and I loved getting it styled in different cuts and colours (red usually!). Nowadays, I'm not well enough to get to the hairdressers - all I can do now is just literally chop off my ponytail every so often to stop it getting too long! In actual fact, trying to keep my hair clean is a huge struggle for me, (to the point where I have ended up with dermatitis on my scalp) so in some practical ways, this move will really make life much easier. I have heard that some people bed-bound with severe M.E. have chosen to shave their heads because they just couldn't manage to keep it clean... so the Big Shave just seemed to be a perfect act of solidarity to those who are even sicker than I am!
My mum's lovely hairdresser, Alyson Tunstall, (who also shaved my mum's hair when it started to fall out during chemo) has agreed to come to my house to shave mine all off for the Big Shave! On Tuesday 14th at 8pm. (Well, actually, I'm getting a buzz cut, since shaving would irritate my skin too much. I'm quite nervous about it - it's a huge step for a girl to take, especially, but am totally going for it to raise as much money as I can for this brilliant event... So please give generously to these charities! There is some information about M.E. on this site (click the 'About ME' link at the top of the page!) - please read it and share it with friends, to help us raise awareness and promote understanding, too!
The last 9 years particularly have been a great struggle, but over that time, I've managed to keep hope alive, and found that, that is the greatest survival mechanism one could foster! When I'm up to it, I like to work on my blog (www.thethingwithfeathers.me), where I write about living with very severe M.E. to raise awareness and to try to offer hope and encouragement to others struggling with chronic illness. If you're interested in learning more about M.E. or in hearing more of my story, please feel free to check it out!
Thanks so much for your support, it really does mean the world to me, and it's going to help so many people!"
“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” — Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)
To donate to my Big Shave, you can either:
Text in your donations by texting:
TBSG99 £5 to 70070 to sponsor the 25% Group today.
TBSI99 £5 to 70070 to sponsor Invest in ME today.
Or
Give online securely, via Just Giving:
To sponsor Invest in ME - http://www.thebigshave2013.org/2013/01/invest-in-me.html
To sponsor the 25% Group - http://www.thebigshave2013.org/2013/01/25-me-group_29.html
You can choose which charity to give to, or even give to both!!!
Please let me know if you send in a donation, so that I can add you to my info. If you're a uk tax payer, gift aid is available, if you provide your postcode. :) If you live in Liverpool, you can also donate in cash - just contact me or my family! I'd love to know if you post about The Big Shave on your own sites, too! Just leave a message here on this post, or email me at susannah@thethingwithfeathers.me.
Thank you all so much for your support, you have no idea how much I appreciate it!
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)
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