Hello and welcome to February’s newsletter. Hope you have had the best month possible.
12 Smiles were sent to both ME sufferers and carers of all ages this month. The items included in our Smiles change all the time as we personalise them with each person’s likes and interests. Some of the items included this month were pamper products, relaxation oils, wax melts, art supplies, lego, photo frame, mugs and hot chocolate.
We love hearing that your Smile has arrived safely and hopefully made you smile. Your kind messages mean a lot and we love seeing your pictures. Thank you to those who sent them to us.
This month’s Smiles were the first with our new wrapping of blue kraft paper, decorated with blue and white twine and stamped with our logo. We hope you like the look of our new Smiles.
New Smile For ME collection boxes are now available. They are made from recycled plastic, 21cm tall and have a Smile For ME sticker design. If you are interested in having one please get in contact with us.
Smile For ME is now a registered charity on AmazonSmile. You can support us at no extra cost. Select Smile For ME as your chosen charity and when you shop we receive a donation.
Smile of the month
Each month we ask on social media what has made you smile? We love hearing the responses and hope by sharing some of your smiles it can help others to find a smile too.
Share a story
Share a story is a segment where we share a story from an ME sufferer or carer about an experience of living with ME to remind others they are not alone. If you love to write and would like to be featured in an upcoming month please email us at firstname.lastname@example.org.
Please note Smile For ME are not medical professionals and all stories shared as part of ‘Share a story’ are personal to the writer and express their individual views and experiences and do not necessarily reflect the views of Smile For ME.
This months share a story is by Pippa who has raised an incredible £954.79 for us in the last couple of years through Spoonie Survival Kits.
Thank you Pippa for sharing your story…
During my first year of university, I was your typical student: studying hard, partying harder, travelling the country for dance competitions, and working towards an honours degree. By the same time the following year, I was struggling to stand up on my own.
I’d been battling for answers to my mystery symptoms since the age of 15, but it was only when my health significantly relapsed and I was struck down by an onslaught of debilitating pain and fatigue, that I was finally diagnosed with Myalgic Encephalomyelitis (ME/CFS). Naturally, this all happened during my very first year of university, just as my young adult life was beginning.
With plenty of support and adjustments, I managed to continue my studies and graduated in 2016, but it wasn’t without its challenges. Adapting to life as a newly disabled student, I often felt lonely, isolated, and like nobody else in the world could understand what I was going through. I distinctly remember being shocked at what little support was available and how much I had to advocate for myself, how hard I had to fight for what I was entitled to, and how exhausting and disheartening it often seemed. Being a student can be a tough time for any young person, however dealing with a fluctuating health condition adds a whole new dimension of difficulty.
From learning how to pace myself alongside keeping up with contact hours and assignments, to managing the demands of independent living, to maintaining relationships with flatmates and friends, it seemed that every element of student life presented issues of its own. However, despite it all, it’s safe to say that my time at university formed some of the best, most rewarding years of my life.
By the time I’d finished my higher education, the writer in me knew that I had to create something that would speak to people in a similar position. I wanted to create the book I was looking for myself, full of all the things I wish somebody had told me. I was looking for niche advice from somebody who had experienced the process themselves, presented in a balanced and non-patronising way. I wanted to share advice that went far beyond your typical standardised advice on academics, and instead encompassed all aspects of student life: socialising, independent living, managing your money, and what to do when things go wrong.
And two years later, here we are. My debut non-fiction book University and Chronic Illness: A Survival Guide was published in January 2020, and one of my biggest dreams has come true. You can find out more about the book here!
Something I’ve made clear throughout the process and in the book itself is that it was by no means written to argue that every young chronically ill person is well enough to pursue university. I know all too well that higher education simply isn’t feasible for ME/CFS, and I will not have this book being used as ammunition to argue otherwise. However, for those who are considering becoming or preparing to become students themselves, I hope it will enable them to make informed decisions and to really enjoy their experience to the fullest.
Writing is one of few things that my own condition hasn’t taken away from me, and as well as being an incredibly fulfilling hobby that’s turned into a job, I really hope to use this privilege to continue putting good things out into the world… and being a supporter of Smile For ME, I learned from the best! Thank you so much to the team for encouraging me to write this post, and I hope today’s as kind as possible to you all!
Thank you to Ride with ME for choosing to support us with your ride out and festival fundraiser coming up on the 31st May 2020. If you are interested in finding out more you can check out Ride with ME Facebook page.
Thank you Maddie and family for your kind support.
A big thank you to everyone who has donated money and shown your support to us this month. Thank you University of Essex Students’ Union, Sophie, Kimberley, Jessica, Tracy, Steve, Dionne and Pauline. Your kindness and generosity means such a lot.
A special thank you to In Her Name Lucie who convinced her Mum and geography teacher to go sugar free during February. Well done to you both. Thank you Lucie and Sue for your continued support.