November 2022

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

Smiles

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 to each person’s likes and interests. Some of the items included this month were blankets, cuddly toys, hot water bottle, bath salts, face masks, hair masks, body lotion, candles, lego set, decopatch craft set, puzzles, mug, hot chocolate bomb, movie gift voucher, popcorn and chocolates.

“Thank you so much, ????????? it has arrived this morning and certainly has brought a very big smile to his face, the gifts were absolutely perfect for him he is super chuffed with the blue mug and is immediately laying on the soft blanket for extra comfort. Hot chocolate is on the cards for a rainy afternoon snuggled on the sofa. Thank you so so much. It really is a wonderful thoughtful idea.”

“Can I just say thank you SO much for Oliver’s Smile present. It was absolutely perfect for him and couldn’t have come at a better time.”

“Logan received his beautiful parcel today and lots of smiles!! You absolutely made his day and snuggling his blanket, eating chocolate and doing his puzzles. I cannot thank you enough. Thank you for your time and beautifully wrapped pressies. I am now thinking of raising funds for Smile for ME so more people will feel the ❤️ . You are a ?.”

“Thanks SO much- it took a little while to track our parcel down with the postie but it was so so well received and appreciated and made such a difference to her evening.

What a lovely thing you do.

Please thank the kind person/s who choose, wrapped and posted these.

It’s something we will remember for a long time.”

Support us

Benefact Group 12 Days of Giving

Nominate Smile For ME, Registered Charity Number 1185760, to win £1,000. Benefact Group 12 Days of Giving is now open. They are giving £120,000 to 120 charities over a 12-day period. The first draw takes place on the 1st of December. 

Shopping

Are you holiday shopping? Why not support us at the same time through AmazonSmile and Easy Fundraising. Sign up with the links below and when you shop we receive a donation at no extra cost to you.

Thank you to those who have already signed up and shopped. We have received £680.23 from AmazonSmile and £1,210.28 from Easy Fundraising thanks to your support.

For a mobile/tablet device

1. Download Amazon app on your device and open it
2. In the main menu tap ‘Settings’
3. Then tap ‘AmazonSmile’ and follow the on-screen instructions to complete the process
4. Shop like normal and we will receive 0.5% donation from your net purchase price on items that are eligible for AmazonSmile donation

Please note renewals are required twice a year to keep generating donations when you shop in the app

For desktop

1. Go to https://smile.amazon.co.uk/ch/1185760-0
2. Pick ‘Smile For ME’ as your chosen charity. Smile For ME will then appear at the top of your screen near the Amazon Smile logo confirming you have selected us (You only need to select us once it will be saved for future purchases)
3. Shop like normal and we will receive 0.5% donation from your net purchase price on items that are eligible for AmazonSmile donation
4. Remember in future you need to start at smile.amazon.co.uk instead of amazon.co.uk each time you shop in order for us to receive a donation. There is a browser extension called Smilematic which if you install will automatically redirect you from amazon.co.uk to smile.amazon.co.uk every time.

For a mobile/tablet device

1. Download Easy Fundraising app on your device and open it
2. Click ‘Create Account’
3. Search for ‘Smile For ME’ and click ‘Support This Cause’
4. Follow the on-screen instructions creating an account to complete the sign up process
5. Search for retailers through the app, shop online and we will receive a donation when you spend

For desktop

1. Go to Smile For ME’s Easy Fundraising page
2. Click ‘support this cause’
3. Create an account with Facebook or Email and enter your details
4. Click ‘add the donation reminder’ to add the extension to your browser
5. Shop online as normal. Donations are available through 3,800+ online brands and retailers. When you are on the website of your choosing if it is an eligible shop you will see a notification in the top right hand corner saying ‘Great news, up to __% free donation on this site’ Click ‘Activate donation’ and we will receive a donation when you spend

Share a story

This month’s share a story is by Katie @katie_andm.e. Thank you Katie for sharing your story of ME, writing about ME having so many sides including severity and fluctuations and one of the rare positives being community.

I’ve had M.E. for 5 years now and when asked by Smile for M.E. to write this I had no idea what to say because there is so much to say about ME and Severe/Very Severe ME but never enough words for it all. Never powerful enough words. There’s the fight for a diagnosis, the gaslighting and abuse from medical professionals, the debilitating symptoms and all it takes. And then acceptance and the community.

M.E. has so many sides: severity, fluctuations, symptoms, changes, management, people and community. The community is one of the rare positives. 5 years ago I got ill one day (shingles) and never got better. And over those 5 years so much has happened.

I’m someone who has spent the majority of their illness journey, and consistently the last two years, getting worse. I’ve bounced around the severities a bit, started housebound, then Mild for a short time, housebound again, Moderate and then Severe and 24/7 bed bound and I now fulfil the NICE Very Severe ME category. Deteriorations mostly due to GET and inappropriate treatment, plus big ones like colds, covid, vaccines and the accident I had.

It’s taken my schooling, GCSEs, A levels, teenage years, friendships, parties, sports, hobbies, family connections and experiences, good experiences, joy and it’s even taken types of bad experiences away from me, but ones that would have taught me things as well as ones I was glad to escape, if only it could have been in a different way.

It’s taken away my ability to walk, sit upright, see people, my independence, and my ability to do my own personal cares or have a hug. It’s taken my sense of self and many times the light I had inside me. It’s ripped me to shreds and torn me apart. That’s mentally and physically.

The term “Mild” ME is a trick given it’s a huge loss of functioning, still unimaginable to most. M.E. is a severe illness. 5 years of daily debilitating symptoms including the year I survived school with it. But the last two years have been on another level. I’ve had to face an unbelievable amount and a constant torrent of symptoms, the crushing weight of them, feeling like my head is underwater and I’m drowning, unable to understand or process the words or what’s going on around me. The days of having to fight for every breath. Delirious due to exhaustion. Paralysis, head-splitting migraines, muscle spasms and myoclonic jerks. Pain. Light and noise hurting.

It’s given me pain, suffering, trauma and mental health struggles. Then community, better friends than I had and an appreciation for smaller things.

The last 5 years have been incomprehensible to me let alone to others. It has been overwhelming and terrifying. How much of a landslide PEM and this illness is as my life has snowballed out of control until I’ve ended near the bottom of the scale (though most definitely not the very bottom). Trapped in this bed and trapped in my own body – fighting to live but my body only imprisons me more.

One thing I can say is that in these 5 years, as my health has been on a mostly downward decline, my acceptance has grown. My community and support have grown. The little moments and getting to do activities feel even more special. Those things don’t take away the rest and I can’t say I’m grateful for the illness, I’m very definitely not and would take it all back to feel healthy. But I am grateful for the community and the understanding it’s given me of the world. Grateful that I’ve grown as a person and found incredible people who I value so much.

It might sound ridiculous to say that my understanding of how to manage the illness has grown when I’ve been getting worse. However it’s in getting worse, this community and finally finding medical professionals that are helpful, that has shown me the truth of this illness and how to manage it.

My journey with ME is unfortunately not over yet, I’m sure there will be many more winds or what feels like an endless road, but it’s nowhere near as long as so many have had. I hope in another 5 years there will be treatment and management. In the meantime, I’m going to do everything I can to try and educate and advocate for better for 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

A big thank you to everyone who has supported us this month. We are so grateful for the kindness and generosity which enables us to continue sending Smiles to those affected by ME. It means such a lot thank you.

Thank you so much to Pauline who’s butterfly scarf raffle ended last month. A wonderful £79 was raised which was generously increased to £100. Thank you to Brooke for crocheting the scarf, Pauline for organising the raffle and everyone who joined in. Congratulations to Julie who won, enjoy the beautiful scarf and thank you for your kind extra donation to us.

A special thank you to Emma and Darcy who held a Prize Bingo and raffle raising an incredible £2,217. We are so overwhelmed by everyone’s kindness. The very generous donation will make a big difference to us, enabling us to send many Smiles to many ME sufferers and their carers. Thank you so very much for putting together such a wonderful event and raising an amazing amount of money for us.

Thank you for taking the time to read our newsletter.

Smile For ME

xx