Hello and welcome to September’s newsletter. Hope you have had the best month possible.
6 personalised presents which we call Smiles were posted this month to both ME sufferers and their carers. The Smiles we send are always individually chosen with each person’s likes and interests in mind and lovingly wrapped with a bow to create a smile. Some of the items included this month were cushions, blankets, candles, bath bombs, fairy lights, cuddly toys, nail varnish, fluffy socks and chocolates.
We love hearing that your Smiles have arrived safely and hopefully made you smile. Your kind messages mean a lot and we love seeing your pictures too. You can check out some of the recipients’ pictures on our Smiles page.
Our nomination form is now open again. You can nominate an ME sufferer or carer of any age to receive a Smile by completing our online nomination form. Click on the link below to access this.
Please note we are a small charity run by ME sufferers and we are only able to send a few Smiles per month. We have to work within our funds and Smiles can take a few months to receive. Sadly we are not able to send to everyone due to the large volume of nominations we receive. If you ever want an update or have any questions please feel free to contact us.
Smile For ME was kindly offered for free to be the sponsor at the Health Blog Awards 2019 for the Best Chronic Illness and Illness Recovery blog category. Clive Wright and Oliver-James Wright went along to represent Smile For ME and hand the winner their trophy alongside Natasha Lipman who was the judge. Well done to those shortlisted and big congratulations to the winner Pippa Stacey with her blog Life of Pippa. As well as blogging about living with a chronic illness Pippa also runs Spoonie Survival Kits who have generously fundraised for us in the past and are kindly going to do so again very soon.
Share a story is a segment where we share a story from an ME sufferer or carer about a personal experience of living with ME to help raise awareness and remind others they are not alone. If you enjoy writing and would like to be featured in an upcoming month please email us at firstname.lastname@example.org.
This month’s story comes from Emily Bailey. Thank you Emily for writing about your personal experience of ME.
Emily has had ME since she was nine years old. Her condition has fluctuated: she has had periods of mild ME and periods when she has been housebound, rarely able to leave her bed. Emily has written a series of articles for ME Essential on being at university with ME; she also writes about travelling with ME at muchadoabouttravelling.blogspot.com. You can follow her online @byemilybailey on Instagram and Twitter.
This is a story of hope.
I have had severe ME. I have spent Christmases, birthdays and every day in between in bed, my body inhabited by this illness, this parasite, this thing that took away who I was. I have watched the days and weeks fall away from me, unable to look after my own body, dependent on others to make it through the day. I know the importance of these stories. The stories proffering understanding; the stories asking for help and raising awareness of the reality of ME, of everything that it takes away. I have needed these stories.
But I’ve also needed another kind of story: a story of hope. Lying in bed, watching the life that I had pictured for myself evaporate before my eyes, I’ve needed hope that something, anything, might get better. I’ve needed hope that there are people with severe ME whose lives have improved. I didn’t need stories of miraculous returns to perfect health: they felt completely unattainable to me, lying in bed, struggling to hold a conversation. But, I needed stories that could make me hope in something.
My story isn’t one of extraordinary recovery. I haven’t gone from spending the majority of my time in bed to running marathons. In fact, I can’t remember the last time I ran; just the thought of it makes my body recoil in apprehension of the payback. But my story is one of improvement, of adapting and stabilising. I am not “better.” I need help to dress, to bath and wash my hair. I can’t face noise in the morning, a simple “hello” often feeling like a jackhammer on my skull. Post-exertional malaise is a constant beside me, a companion I rarely forget about. And yet my life is far from the one that I was living a few years ago, housebound and hopeless.
I am now a university student, one who finished her first year with some of the highest grades on her course. I am a culture nerd who is making plans to visit museums and galleries on her mobility scooter whenever her health allows. I am someone who opened a jam jar for the first time in years last week (yes, that is equally as exciting as the previous two accomplishments; opening jam jars is really hard, particularly when your arms spend most of the time feeling like jelly). I am also a devoted Bon Jovi fan who saw them perform at Wembley Stadium this summer (believe me, the planning and pacing for that one was intense; as was the recovery). Seriously, I saw Bon Jovi; that was my life’s bucket list, just that one thing!
ME took a lot from me but, slowly and surely, I have begun taking things back. My education, my hobbies, my confidence; all of these things that felt so distant from me are now back in my grasp.
As I said, this isn’t a story of extraordinary recovery and it hasn’t been easy. It’s a story that owes an awful lot to many people (the counsellor that I saw to deal with the impact that ME was having on my mental health; the private consultant I am lucky enough to be able to see who actually prescribed me medication to help with my condition, a novel approach after years spent under the NHS; my family, friends and many other people along the way). It’s a story of careful plotting, planning and pacing, creating a stable baseline that I can operate from. And, maybe, it is a story of hope. I don’t have an ME-free life and perhaps I never will, but I can call this life mine again, not ME’s, and because of that I am hopeful.
One way to support us is through Easy Fundraising. If you shop online why not collect free donations for us at the same time? Simply follow the steps, sign up and add the easy fundraising link to your bookmark so each time you shop Smile For ME receives money for free at no extra cost to you. We have already raised £551.83 thanks to those who have signed up.
Another way you can support us is by purchasing our merchandise. Light blue cotton t-shirts, sweatshirts and hoodies with printed Smile For ME logo on the front and website address on the back are available to buy here.
Next month on the 20th October Andy is running the Great South Run to fundraise for Smile For ME. Thank you Andy and the Potterton family, especially Gill, for your continued kindness. If you would like to sponsor him you can do so here. Good luck Andy!
Thank you to all those who have donated and supported us this month. Your kindness is really appreciated.
A big thank you to David and Lucketts Travel for your donation. Very grateful for your kind thoughts and generous support.
A special thank you to Macey and Leonie who raised £190 for us in Lucie’s name by cutting their hair. You are both amazing and choosing to support us means such a lot thank you. If you would like to sponsor them you can do so here.
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