Hello and welcome to September’s newsletter. Hope you have had the best month possible.
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 photo and frame, cross stitch set, paints, a Hanjie puzzle book, notebooks, colouring books, pens, mug, hot chocolate bombs, Funko Pop!, cuddly toy, eye masks, face masks, lip balm, nail varnish, socks and fluffy socks, blankets, chocolates and sweets.
Share a story
This month’s share a story is by Laura. Written for Severe ME Awareness last month she shares her experience of what it’s been like living her 20’s with Severe M.E. Thank you Laura for sharing your story, wishing you a Happy 30th Birthday.
One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13. I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much.
I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.
We all have these big ideas about what our 20’s are supposed to look like, how they’re supposed to feel and who we’re supposed to be. I’ve watched through a screen while the majority of people I grew up with have spent their 20s living; been to university, travelled, started careers, fallen in love, had families, bought their own homes, experienced so much.
Meanwhile, in my 20s I have had to have my most basic needs seen to by my Mum, my family, my friends, complete strangers. My Mum and I have spent hours upon hours on the phone to Receptionists, Doctors, Nurses, Social Workers and Carers, often begging for help. I have tried countless medications and experienced countless side effects and struggled to manage countless symptoms by myself. I have been unable to speak and unable to feed myself, unable to sit up and unable to stand, unable to cope with the presence of other people and unable to be safely left alone. I have spent the vast majority of my 20s in bed and alone in the darkness and silence, unable to access the outside world and all it has to offer.
And yet I have experience too, it just looks a little different. I have learned that I still do so much to help the people I love, that my value is not in what job I am not in, that I am a great daughter and sister and auntie. I have learned how to ask for help and how to advocate for myself, that I am brave in times when others have had to look away, that strength is not just physical. I have learned how to let myself feel all my emotions, that positivity is not always needed, and that I am able to eventually laugh through anything. I have learned that friendships with people who just “get it” make a huge difference, that everything is made easier with the right health care and community support, but I have also learned that it isn’t always accessible or freely given.
And that brings me to now, 1 month before my 30th birthday. I still spend most of my life in bed and in the dark and silence. There are still many days when it all feels a little hopeless. But I still desperately want to live.
I don’t know what my 30’s will bring, life with M.E is always uncertain, and I have learned to be mostly okay with that. What I do know is that surviving over a decade with Severe M.E has helped prepare me for whatever comes next, the good and the bad. I know what I’ll be wishing for over my birthday cake.
If you would like to read more from Laura she wrote for us previously in August 2020 about living with Severe ME which you can be found on our website: smileforme.org.uk/shareastorylaura
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.
A special 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 big thank you and good luck to Andy who is fundraising for Smile For ME by taking part in the Great South Run next month. If you would like to support check out his fundraising page: www.gofundme.com/f/great-south-run-2023