July 2023

Hello and welcome to July’s newsletter. Hope you have had the best month possible.

Smiles

10 Smiles were sent to both ME sufferers and carers of all ages this month. All chosen and personalised to fit each person’s likes and interests. Some of the items sent this month included art supplies, paint by numbers, art motif, diamond art set, felting kit, punch needle kit, decopatch kit, crochet hook and yarn, socks, blankets, eye mask, bath bombs, make up, candle, book ornament, reusable travel mug, tea, baking mix, sweets and chocolates.

Support us

Fundraise

Smile For ME is now registered with Just Giving. If you would like to fundraise for us you can create a fundraising page here: www.justgiving.com/smile-for-me  

It is thanks to the kind support and fundraising efforts we are able to continue sending Smiles to those affected by ME so your support does make a difference to us. As well as Just Giving all the different ways you can raise funds for us are listed on our Fundraise page: smileforme.org.uk/fundraise 

Shop

“Please Offer Me A Seat” pin badges are now for sale: smileforme.org.uk/supportus

Pin badges originally created and sold by misstheabella in collaboration with Natasha Lipman as a fundraiser for Smile For ME. Now being sold by Smile For ME with 100% of the profits going towards enabling us to continue sending Smiles to ME sufferers and their carers. 

“Please Offer Me A Seat” – because not all disabilities are visible. Blue coloured soft enamel, rose gold plating, 3cm diameter. 

As well as new pin badges limited Smile For ME wristbands, t-shirts, fitted t-shirts and hoodies are still available: smileforme.org.uk/supportus

Share a story

This month’s share a story by Daniel Moore is a little bit different with there being an audio link as well as his writing. Daniel shares about his experience of starting a podcast about living with ME and chronic illness, creativity and making meaning with his friend Dov. The Podcast is called Post-Exertional Mayonnaise and he hopes that people can come listen and feel less isolated. Thank you Dan for sharing your story.

Post-Exertional Mayonnaise with Dan and also Dov’s story can be listened to on YouTube, Apple Podcasts, Spotify, Amazon Music or Audible.

Starting an ME podcast. 

A friend, Dov Zeller and I are starting a podcast about living with ME and chronic illness, creativity and making meaning. We’re really different people, living on different continents. I’d be happy spending an afternoon watching two football matches in a row. Dov would be found researching for his latest book and making Tempeh when his energy allows. I have followed his culinary lead occasionally and made sauerkraut in the past although I used too much salt and it sat in the back of the fridge for far too long! 

If might be that we’re an unlikely pairing but sometimes unlikely works well. We met on twitter back when it was a healthier place and we talk on zoom every two or three weeks. What we do have in common though is a love for photography, a desire to discuss deeper things in life, oh and we both have ME. 

When you have ME and meet someone else with ME, there is a common bond of understanding and empathy through shared experience, knowing that they also understand the illness and the deep emotions that the condition will elicit. We will often have a really interesting conversation and will quip afterwards that we should make a podcast. We talked in more detail about how we could make it possible and started sharing ideas over a shared document. 

Once we decided on a name, we asked an excellent illustrator who has ME if she could design a logo. If you haven’t seen Lu Baker’s art, please take some time to check her work out. We’re really thankful and pleased with her colourful design of our ‘post-exertional mayonnaise’ jar. Dov and I are both aware that we have really limited capacities and so on recording our first conversation, we limited it to 20 minutes. Taking on new ventures while living with moderate to severe ME seems like a foolish thing, and maybe it is, so we have to manage our energy envelopes accordingly. Yet this is an exciting venture and the difficulty is that, when living with ME, we have to elevate our own weary voices to try and bring recognition and support to each other and to the wider ME community because it feels very much that we’ve been left on our own as a growing cohort of chronically ill people. 

We have a number of guests who have agreed to come on the podcast and we’re looking forward to meeting and talking to them: authors, illustrators, artists, musicians, poets, photographers and crafters. We don’t know yet how regularly we can make and produce content, and we want to make the production process as simple as possible to reduce hours of editing and sound production. Having said that, we want it to be good and we want to help build a sense of community, so we might find ourselves walking a tightrope at times where managing our illness will always take priority. 

My hope is that in a year’s time we can have a number of episodes in the bag and that people can come to the podcast, listen (or watch on you tube) and feel less isolated. During our introduction podcast I said that I was keen that we had a reality rather than a recovery narrative and Dov also stressed that we want to provide a space to Kvetch, or perhaps a British term would be to chew the cud, or put the world to rights; a place where we can express our frustrations too. 

If any of this interests you, please take a listen to us on Spotify under Post-Exertional Mayonnaise or watch us on you tube here. 

You can contact us via email at pempodcast23@gmail.com and find us on social media. Having a weird name means we’re easily searchable! 

Daniel Moore

Fundraising

Tarryn’s Skydive

A big thank you to Tarryn who bravely completed a skydive raising a wonderful £235 for us. Tarryn we really appreciate you kindly choosing to support us again and for helping us to continue sending Smiles. Thank you to everyone who supported and helped Tarryn beat her fundraising target.

Bake4MECFS’s The Great Outer Space Bake Off

Throughout May and June Bake4MECFS held their The Great Outer Space Bake Off. The competition closed 30th June and the entries were judged by celebrity judges Jennie Jacques, Alyssa Carson, The Baking Explorer and Juliet Sear.

Collab bakers were available if your chronic illness prevented/limited your baking so you were still able to be involved. This was my (Alice) personal collab baker entry. Baked by the talented @treatyoselfnz. Inspiration picture I sent was from @twiinkleycakes. Thank you Victoria for creating something so wonderful and for your kind support.

Congratulations to the Star Baker, Young Star Baker and Tiny Star Baker and a big thank you to those who joined in and decided to support Smile For ME, the money raised will help make a difference to us. 

Smile of the month

What’s made you smile this month? Each month we ask this question on social media and we love hearing the responses. We hope by sharing some of your smiles it can help others to find a smile too. 

Thank you’s

Thank you to everyone who has supported us this month. Your kindness and generosity means a lot because it enables us to continue sending Smiles to those affected by ME. We are so grateful thank you.

Help with research to make DofE more accessible

Charlotte and her group are currently on the first ever DofE Gold virtual expedition. They are part of a pilot study helping to create a more accessible Duke of Edinburgh Award.

Smile For ME has benefited from DofE Bronze and Silver Awards in the past with some fundraisers and Charlotte informed us some of the people in her group have received Smiles from us themselves.

If you would like to help them with their virtual expedition they have a questionnaire they would appreciate you filling out: DofE Expedition Accessibility Questionnaire

The survey may be completed by anyone of any age or gender with a physical or mental health difficulties who has started or completed one or more levels of the DofE Award, or anyone who has had the opportunity to sign up but decided not to. The survey should take you no more than 5-10 minutes to complete and you may ask a parent/carer to help you. Responses needed by August 20th. If you have any questions about this study please contact – catherine.wood@dofe.org

 

Thank you for taking the time to read our newsletter.

Smile For ME

xx