September 2024

30/09/2024 2 By Smile For ME

Hello and welcome to September’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 a cushion, blanket, cuddly toys, eye mask, socks, lego gift set, pamper gift set, bead gift set, water bottle, glass, crystals, cycling accessories, pin badges, xbox voucher, hot chocolate, tea and chocolate.

Special touch

In our Smiles we are including a token item donated by someone affected by ME as a special touch from our community.

Included in the Smiles sent this month was a handmade clay ornament donated by Tara. Thank you Tara for spreading a smile with your wonderful ornaments and for your kind support.

“Thank you so much for my package, it really cheered me up after a rough couple of months. It also made me appreciate how lucky I am to have friends that nominated me and fully understand my illness and everything that comes with it. Love the gifts, shower is a hard task for me but my new smellies will help”

“I had the loveliest surprise last week when a parcel from Smile For ME arrived for me! My gorgeous fiancée nominated me for a Smile, and it was the most exciting and heart warming thing! Smile for ME send personalised care packages to people who suffer with ME and their carers! They are amazing! Thank you for my lovely and thoughtful gifts, and thank you honey for nominating me! I love you so much”

Share a story

Share a story is a segment in our monthly newsletters where we share a story from someone affected by ME to help raise awareness and remind others they are not alone. If you would like to be featured in an upcoming month please reach out: smileformecharity@gmail.com

This month’s share a story is by Elaine. Thank you Elaine for sharing your experience of ME seeing the darkest and lightest it has to offer.

I have been in a mild, moderate, “on a break”  and severe relationship with ME for almost 3 decades. As with any relationship, I have seen the darkest and lightest that it has to offer, as well as the side effects. The lightest side effect is definitely friendship with online people who understand this daily struggle. (What a relief to discover that others also have to adjust to sensory overload, managing communication with voice messages, listening to audio books at 80% speed and also not tolerating the smell of cleaning products, perfume or aftershave.)

The darkest side effect, even beyond the endless pain and horrible, sometimes terrifying symptoms, has to be the loss of those friends from the days of better health.

We know when facing any illness, a network of supportive friends for mental and emotional well-being is essential.

And yet, for many of us, this essential element is missing. Chronic illness is a kind of no man’s land, a territory nobody wants to visit, least of all old friends. Faced with a specific acute illness, it can be very frightening. A diagnosis, surgery, treatment and then hopefully, the slow road to recovery. Friends understand this process and rally round.

With ME and its very long list of symptoms affecting every part of the body, the diagnosis can take years, there is no treatment and no prognosis. A confusing and frustrating no man’s land for everyone.

Then there are the different degrees of illness. When I was mildly affected I would sometimes slip into moderate and then back into mild. In remission, when I had a break from most of it, I thought I was cured. Now I am back in the relationship and classed as severe. Some days are very bad, others are ok ish. Hard to predict and that’s confusing.

Of course, I am not the only one in this situation. Others with ME also face the dilemma of erratic energy and symptoms. And the possibility of PEM or even crashing, that socialising in person or by phone brings. Despite careful pacing, and as much fun as a visit might be in the moment, it only takes a couple of crash reactions after these visits to create huge anxiety for future attempts. Many friends simply cannot understand this and the adjustments needed are sometimes more than they are willing or able to make. Many friends simply drift away. As they move on with their lives we are left with a sense of rejection and loss as well as distressing shame and guilt.

So who would be the ideal friend? For me, a friend who checks in regularly, asking how I am and genuinely wanting to know, just as I am curious to know about their lives. A friend who listens without trying to fix. A friend who wants to support me in my journey and would therefore be willing to understand and help with navigating the energy dilemma. A local friend who asks: How can I help? Who drops off a couple of cooked meals now and then to help my long suffering husband who everyone knows really dislikes cooking! This is the ideal and any variation would, naturally, be welcome.

Meanwhile I am deeply grateful for family and the few friends who stick by me, who do stay in contact and do care.

As for online friends with the same conditions, I could not cope without them. These are people suffering with painful symptoms and limited energy yet with beautiful generosity of spirit, patient listening, warm hearted support and sincere caring. I have never met them in person but they have stayed with me through tears and torment, celebrated my small wins and encouraged me to keep going.

What an amazing community of people who care. Some go even further and set up organisations like Smile for ME to bring a little joy into the lives of people with this illness as well as their carers.

I am so grateful to you all.

Fundraising

Andy

A big thank you and good luck to Andy who is kindly supporting us again next month by running the Great South Run. You can donate to Andy’s Just Giving page here. Thank you Andy for so generously supporting us time after time. It means such a lot that you choose to help us in support of your Mum.

Darcy

A special thank you to Darcy who had 15 inches chopped off her hair, donating the hair to the Little Princess Trust and all monies to Smile For ME. She raised an amazing £350 which will enable us to continue sending Smiles to people affected by ME so we can’t thank her enough. Darcy it means such a lot that you choose to support us again. Thank you for your kindness and generosity.

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.

A special thank you to Excelsior Lodge for their generous donation of £515. We really appreciate you kindly supporting us.

Thank you to Fearn Antiques, an antique shop in the Scottish Highlands who have kindly put one of our collection boxes in their shop.

Thank you for taking the time to read our newsletter.

Smile For ME

xx