May 2020

31/05/2020 2 By Smile For ME

Hello and welcome to May’s newsletter. With everything happening in the world at the moment we want to let you know we are thinking of you and hope you are keeping safe. May has been a busy month for Smile For ME from remembering and celebrating Merryn albeit in a different way than planned, to joining in with raising awareness of ME and playing a rainbow game to keep smiling. Hope you have all had the best month possible.

Updates

Due to current times Smile For ME has not been operating fully for the past couple of months. We are however starting to look at moving forward and have made the decision to go ahead with our annual celebration of carers during Carers Week in June. We will keep you informed about when our regular Smiles will return. Thank you for your patience and understanding during this time.

Nominations for Carers Week are now closed. Thank you to those who nominated. Smile For ME and BearHugs are looking forward to those receiving their Smile Hug.

Merryn

13th May 2020 was Merryn’s 24th Birthday. Merryn sadly passed away from severe ME just days after her 21st Birthday. Last year Smile For ME created an event, Merryn’s Smile Day, where each year on her birthday we remember and celebrate her by sending Smiles to severe ME sufferers in her name. Unfortunately this year’s plans had to be postponed due to COVID-19 but we still wanted to remember Merryn on her birthday. Clare, Merryn’s Mum, kindly wrote a piece for us to share so you could all get to know the wonderful Merryn more. Thank you Clare for sharing.

It was with sadness that I heard Smile for M.E weren’t able to send out their packages as normal due to Covid 19 as I know how important their work is and the effect it has on the recipient, and obviously that also meant Merryn’s Smile Day couldn’t happen. So when Alice asked me to write something about Merryn and share a little bit of the person behind the day it felt like a wonderful way to honour Merryn. But how do you describe a ball of mischief, love, trouble and gentleness, how do I encapsulate her love for life and her beautiful heart? I will do my best, although I’m sure I’ll fall short.

Merryn was a bundle of energy with an amazing joy at life. She didn’t walk into a room, she bounced. She would draw people to her and her infectious laugh could be heard by all around her. We’ve been told by schoolfriends of Merryn’s that her laugh could be heard echoing down the school corridors, you could hear her before you saw her and this is an enduring memory of her.

She was fearless and a daredevil. The worst thing you could do was tell her she couldn’t do something or dare her. On a family holiday there was a HUGE inflatable slide. Amy dared Merryn to jump onto it. I remember saying to Amy “why on earth did you say that!” and Amy replying “even Merryn won’t do that” Minutes later we saw Merryn jumping high into the air and bouncing all the way down the slide!

Merryn had the kindest heart. No matter how ill she was she always thought of others, never forgetting birthdays, special occasions or a just because gift. If she knew a friend was going through a particularly bad time she would send a card, a little gift or her favourite – a balloon, as she always said balloons make everyone smile. It gave her joy to think she had made someone smile.

She was a fashionista with a style totally unique to her! She somehow managed to put clothes together that shouldn’t go at all yet on her they worked. She was approached numerous times when out and about by fashion bloggers and photographers wanting to take her picture and write about her style. Her hair – big, backcombed and usually topped by a big bow had its own Facebook page set up by someone at school, Merryn thought it was hilarious!

Merryn hated injustice and would always support the underdog. She was fiercely loyal and particularly passionate about supporting the homeless and homelessness issues.

Merryn was tenacious and stubborn. Once she made her mind up, that was it. She was relentless in her quest for a nose piercing and pestered me weekly from the age of 13. The answer was always the same- she could have it when she was 16 but she never gave up and in the end she did get it done slightly before her 16th birthday much to her joy. I think this tenaciousness helped her cope with the unrelenting suffering she endured with Severe M.E.

Merryn loved school, although more for the social aspect than the learning! She was devastated at missing a lot of her final year, and too ill to sit her exams was given leniency and awarded predicted grades based on her work. Her proudest achievement was receiving an A for drama, a subject she loved and was so good at.  Her dreams were of studying Performing Arts at LIPA and pursuing an acting career with her dream job being The Dr’s assistant – she was a huge Dr Who fan, particularly Matt Smith. Merryn had amazing comic timing and one of her last performances at school was a Victoria Wood sketch (the exercise one). She was hilarious and fearless in her portrayal of it. 

Merryn was fun, she wasn’t a stay at home kind of person, she wanted to make the most of every day and was always up early ready to take on the world. New adventures awaited and whether that was family fun or spending time with friends the day was never dull, it was sure to involve laughter and ridiculousness and be planned in the moment, although often that was too much planning – one such adventure involved London, pot noodles and no forks and is for sure the cause of some of my grey hairs, Em Foster you know what I’m talking about!

Merryn’s two mantras for life were ‘Count Your Blessings Not Your Flaws’ – the lyrics to a song by one of her favourite singers Lauren Aquilina and ‘Life Isn’t About Waiting For The Storm To Pass, It’s About Learning To Dance In The Rain’ – which was above her bed. Merryn lived by both of these and I am always in awe of her amazing courage and bravery, she was and will always be an inspiration to me.

ME Awareness

ME awareness day is the 12th May and this year lots of awareness was raised virtually. Well done and thank you to everyone involved in giving a spotlight to those suffering.

Millions Missing

Millions Missing is a global campaign to raise awareness. Shoes are placed to symbolise the number of people missing from life due to ME.

Alice
Age 25
Missing since 2009

#1weekaboutME

1 week about ME is a photo and message challenge created by Vicky to raise awareness and help other sufferers feel less alone. Everyone experiences ME differently so it was great to see people join in and share their own personal experiences. Thank you to everyone who got involved. You can check out #1weekaboutME on social media to view other peoples awareness posts. We have also created a story highlight section on our Instagram called ‘Awareness 2020‘ where you can view lots of the posts.

Alice’s #1weekaboutME

Grace’s #1weekaboutME

Blue Sunday

This year’s Blue Sunday tea party for ME, created by Anna, took place on Sunday 17th May. It was an amazing event which raised awareness of ME and money for ME charities whilst enjoying some cake.

We loved seeing your Blue Sunday pictures and chatting to those joining in. A special thank you to those who chose to support Smile For ME. Thanks to your kindness you helped raise £380 for us which will go towards sending ‘Smiles’ to those affected by ME.

Thank you Anna for letting us be a part of Blue Sunday 2020.

Radio Oxford

Grace who is local to Oxford recorded a small piece about Smile For ME and what Oxford can do to help. It was played on Radio Oxford’s ‘Make a Difference’ slot which you can listen to here at 16.46 minutes in.

Rainbow smile game

We loved playing the alphabet smile game with you last month so we decided to play another little game. This month it was the rainbow smile game. On our social media each day we asked you what was something connected to a certain colour of the rainbow that made you smile. We had lots of lovely responses and we hope that by sharing some of your smiles it helps others to find a smile too.

Thank you’s

A big thank you to Tarryn who has been fundraising for us throughout the month by doing a 12 mile ride on her exercise bike. She raised an amazing £240. Thank you Tarryn for your kind support and well done on your achievement. If you would like to support Tarryn her donation link can be found here.

Thank you so much to In Her Name Lucie’s family, friends and neighbours. The In Her Name Lucie is the biggest fundraiser we have ever had and lockdown isn’t stopping them. A special thank you to Katie who has been entertaining her neighbours by leading a dance session every morning and also kindly raising money for Smile For ME. During this time Katie was nominated for The Telegraph’s Britain’s best neighbour award which she won. Congratulations Katie!

We are so grateful to all the Forrest family and everyone who has fundraised with them. Thank you for being incredible and enabling us to send more Smiles. Check out In Her Name Lucie’s Facebook page to follow along with their fundraising. Thank you everyone for all your efforts including Jenny at Presents Felt who made face masks with donations going to Lucie’s fundraising page.

Wishing you all the best for June.

Smile For ME

xx