Hello and welcome to February’s newsletter. Hope you have had the best month possible.
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, cosy socks, colouring books, colouring pens, activity books, notebooks, an Xbox voucher, nail polish, face masks, a mug, biscuits, chocolates and sweets.
Merryn’s Smile Day 2021
Merryn’s Smile Day takes place on the 13th May and is an annual event where we send Smiles to those affected by severe ME in Merryn’s memory.
Merryn Crofts sadly passed away from severe ME in 2017 just days after her 21st birthday. I was lucky enough to be her friend and thanks to her family’s blessing Merryn’s Smile Day was created in 2019 to celebrate her birthday. Smile For ME want to remember Merryn by sending a Smile in her name to those suffering with Severe ME. Merryn loved sending little gifts and also loved it when happy post arrived for her so we are glad to be able to do this in her memory. We hope it makes the recipients smile as much as Merryn made others smile.
Nominations for Merryn’s Smile Day 2021 are now open. You can nominate a Severe ME sufferer for a Smile by completing the nomination form.
For more information about Merryn and Merryn’s Smile Day click here.
Smile of the month
Each month we ask on social media what has made you smile this month? We love hearing the responses and hope by sharing some of your smiles it can help others to find a smile too.
What’s made you smile this month?
Share a story
This month’s share a story is by Daniel. Thank you Daniel for sharing your experience of ME…
Hello my name is Daniel and I have been asked to share my ME story. I wasn’t given a diagnosis until 2012 after years of tests and too many blood tests. I had not really heard of Chronic fatigue syndrome or myalgic encephalomyelitis or fibromyalgia up to this point all I can remember is that I felt so ill almost every day and had such a deep tiredness and it never seemed to improve and would get excruciating pain in my joints and constant headaches and cognitive issues (Brain fog was a new set of words) and I had to do something about it. Sadly it took years to get my diagnosis and even longer to get help with my pain and it was frustrating and scary.
Like many though I have many other illnesses and have been hidden from the world since I was 14. I was first diagnosed with acute depression at 14 and before I even knew what it was showed signs of body dysmophic disorder and fell into the horror that is anorexia. At 20 I started to become very anxious about safety of myself and loved ones and this slowly developed into severe obsessive compulsive disorder which I’m sad to say is still very much in control of my life and I’m 42. OCD really effects my ME etc as you can imagine because when I get scared or triggered the compulsion is to make it better as soon as possible and it doesn’t care if I’m weak and have no energy so and OCD flare can then lead to huge payback.
I’m pretty much housebound very rarely go out but that is more for the OCD if I’m honest but I do get very weak days and times when I can’t do much and crowds and noise affect me terribly. I’m still trying to learn to pace but I struggle.
I think the hardest part of this illness is not being in the world and all the things we’re missing and worst of all is the loneliness. I am so grateful for online communities because I have learned so much from others and speaking to people who understand is so powerful and I have made some of the most wonderful friends.
Life is hard and lonely and scary but we matter and we count and we deserve to be heard. We do our best and I truly believe we are some of the strongest souls in the world. Never give up hope and find joy even in the littlest things. I love to write it helps me escape and is so cathartic. I love to express myself and if I can reach out to others and help them feel less alone and understood that is truly the greatest reward.
I had reservations about writing this because I know so many people who are suffering so much more than myself and it breaks my heart to see so many beautiful souls hidden from the world and forgotten but I know it’s not good to think like that because we’re all struggling and fighting and we need all need compassion and love.
Lastly I just want to share a poem with you and to tell anyone reading this that you matter and I see you and you are not forgotten and to those caring for them too.
I see you even if you feel lost and I hear your pain.
I know you feel lonely and hidden away.
I know your battles and I see your strength.
Please never give up my friend.
I see you, I hear you and you’re never alone.
For you my friend are a warrior and are stronger than stone.
From one sufferer to another I send you strength
and love and a massive spoonie hug!
A big thank you to Jane and Sainsbury’s Badger Farm for generously donating a £200 Sainsbury’s gift card which will be used for our Smiles. Thank you Kayleigh, a previous Smile recipient, for kindly putting us in contact with Jane.
A special thank you to everyone who has supported us this month. Thank you Joanne for raising money for us through Facebook with your Birthday fundraiser, hope you had a very Happy Birthday.