Hello and welcome to May’s monthly update. This month has been a busy month for us from sending smiles, remembering and celebrating Merryn, and joining in with raising awareness for ME awareness day. Hope you have all had the best month possible.
We sent another 12 regular smile presents to both ME sufferers and carers this month. Our smile presents change all the time as we personalise them with each person’s likes and interests. Some of the items included this month were jewellery, blankets, cushions, make up, stationary, mugs, sweets, chocolate and a vinyl record. They are always lovingly wrapped in our signature blue and white spotty wrapping paper, decorated with a bow to make it extra special and posted to nominees to brighten their day.
We love hearing that your smile present 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.
On the 13th May we celebrated Merryn’s birthday by sending 64 presents to severe ME sufferers. Merryn is a very special person and we were really glad to be able to do something she would love in her memory.
There is a separate post with more information and lots of pictures of people receiving a smile in Merryn’s name which can be found here. Merryn’s Smile Day was a special day and it was really lovely seeing all the pictures and messages from those receiving a smile and also remembering Merryn as the wonderful person she was. Lots of love to her family and friends.
We have changed the online donation platform we use due to the upcoming closure of MyDonate on the 30th June 2019. We are now registered with Virgin Money Giving. Virgin Money Giving works the same way, you can donate, set up monthly donations and create fundraising pages. We would be grateful if those of you who set up monthly donations or fundraising pages and wish to continue could please transfer over to Virgin Money Giving. Thank you.
ME awareness day is the 12th May and this year lots of awareness was raised across social media and in real life too. Well done and thank you to everyone involved in giving those suffering behind closed doors a voice.
Missing since 2009
Millions Missing is a global campaign for ME health equality which took place across the country. My family and I supported Millions Missing Southampton. Thank you Claire for organising the event at Guildhall Square and to those who supplied information for tags and donated shoes. You all helped to raise awareness for the millions missing.
1 week about ME is a photo and message challenge created by Vicky to raise awareness and help other sufferers feel less alone. Thank you Vicky for creating 1 week about ME and thank you to everyone who joined in, we loved seeing your posts.
Photo: Introduce yourself
Message: My life with ME is…
Hello I’m Alice
My life with ME is like being trapped inside a body that no longer works. It’s a daily fight that effects and has changed every aspect of my life but doesn’t define me. It’s taught me to appreciate the little things in life and focus on the good because although everyday may not be good, there is something good in everyday.
Photo: Pyjama day
Message: On my bad days…
On my bad days when I’m not even well enough to lift my head off my pillow I need help with basic daily tasks, my parents spoon feed and hold drinks for me. I have to be in complete silence and darkness otherwise all my symptoms worsen. All whilst I daydream of the outside world I wish to be a part of again and keeping hope that tomorrow is a new day with a new opportunity to be better a one.
Photo: Smile For ME
Message: On my good days I…
Smile For ME drawn by the talented Sarah Mozer.
On my good days I can sit up in bed and have my curtains open to look at the outside world. I can communicate with friends, watch a little bit of tv or work on Smile For ME.
Photo: Something you’re proud of
Message: The biggest challenge I have won with ME is…
Something I’m proud of is all I have achieved with Smile For ME.
The biggest challenge I have won with ME is always finding a reason to smile.
Photo: Draw a picture or write a message
Message: I wish people without ME could understand…
I wish people without ME could understand that we want to be well again more than anything so if it was that simple we wouldn’t put ourselves or our loved ones through this. We can’t just get on with it, ME is a real physical illness that effects hundreds of thousand of people and changes lives forever. We want to be a part of the real world and be able to live life to the full.
Photo: Play with spoons
Message: My advice to other spoonies is…
My advice to other spoonies is to remember you are not alone. There is a whole community of us who are going through the same thing and we understand. Learn to fight with your body instead of against it. When your body is telling you you need to rest don’t fight against it fight with it and take the rest. It doesn’t mean you’re giving in and letting ME win, it means your giving your body what it needs and a chance to carry on fighting when you are a little stronger.
For those who don’t know what a Spoonie is it references someone living with a chronic illness which originates from Christine Miserandino’s Spoon Theory story. She explains what it is like to live with chronic illness to a friend and uses a handful of spoons to demonstrate how her energy is used with every single activity.
Photo: The sky is the limit
Message: ME isn’t all of me. I…
ME isn’t all of me, I’m still me.
Everyone experiences ME differently so it was great seeing lots of people join in and share their own personal messages. Thank you to everyone who got involved. You can use #1weekaboutme on social media to view other peoples awareness posts. We have also created a story highlight section on our instagram called ‘Awareness‘ where you can view lots of the posts.
Thank you to everyone involved in helping to raise awareness of ME.
Each month we ask on social media what’s 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.
My personal smiles of the month have been seeing some friends, watching my brother run across the finish line after completing a marathon thanks to technology, and celebrating my friend Merryn. Leave a comment below letting us know what’s made you smile.
This month was a busy month of fundraising thanks to Samsung IM Channel and Sales Operator team who are kindly fundraising all year for us. A big thank you to everyone involved, you are amazing and we are so grateful for all you are doing for us.
Abbie and friends completed the Rough Runner
A Bake Off competition was held. Congratulations to Nurgis for winning Star Baker!
My amazing brother Oliver-James ran the Southampton Marathon
The team completed the Colour Obstacle Run
- Thank you to every single person who donated to us this month. So grateful for your kindness and generosity which enables us to do what we do. Your support really does mean a lot.
- Thank you Toni for painting some Smile For ME rocks to help raise awareness.