February 2025

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

Nominate

Nominations for Merryn’s Smile Day 2025 are now open. You can nominate a Severe or Very Severe ME sufferer to receive a Smile on the 13th May 2025 by completing our nomination form. Repeat nominations are considered as we know it’s tough being in the same position as time passes so we’d love to keep reminding those severely affected that they are thought of and not forgotten.

Merryn’s Smile Day Smiles are different to our regular Smiles, they are all organised and sent with Merryn and Severe ME in mind. We use minimal packaging and the Smiles are not wrapped as opening presents with Severe ME can be difficult in many ways. The present options include balloons, cuddly toys, cosy accessories, flowers and plants which we then personalise with information we receive from the nomination form. Every Smile is packaged with love which Merryn radiated.

Merryn’s Smile Day is a special annual event when we send Smiles to those affected by Severe ME in Merryn’s memory on her Birthday, 13th May.

Merryn Crofts sadly passed away from Very Severe ME in 2017 just days after her 21st birthday. I (Alice) 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.

Read more about Merryn and Merryn’s Smile Day: smileforme.org.uk/merrynsmileday

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 teddy bear, squishmallow, rubber duck, fluffy socks, blanket, eye mask, book, bookmark, craft gift sets, wordsearch book, colouring book, pens, notebook, sketchbook, pin badges, bracelet, trinket dish, dangly love heart, pamper gift sets and sweets.

Special touch

In our Smiles we include 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 polka dot heart donated by our local shop Finishing Touches. Thank you Dave and Sharon for your kind support.

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 are interested in writing a piece for us please get in touch: smileformehcharity@gmail.com

This month’s share a story is by Naomi Gilchrist. Thank you Naomi for sharing your experience of how creativity helps you live with ME.

Hi I’m Naomi, I’m 31 and I have Severe M.E. It was lovely to receive a message from Alice asking me to write a piece for February’s Smile For M.E.’s monthly feature. I think it’s important that people with M.E.’s voices are heard and it’s great that Smile for M.E. do this.

Smile For M.E. is a charity that means a lot to me in many different ways. I was kindly nominated by a wonderful friend to receive a Smile Parcel back in August last year and it truly brightened my world at a time when I was having a difficult time both with my health and personal life. I wasn’t expecting my parcel so it truly was a surprise to receive. Everything that was chosen to be put in my parcel was so perfectly matched to me as if everyone at Smile for M.E. knew me personally. For example sending me bath products because I can’t tolerate showers, and including lots of crafty things there were also some metallic colouring pens and only recently to receiving my parcel I’d been thinking how much I’d love to have metallic colouring pens and I was going to put them on my Christmas wish list.

What I also loved in my parcel was the card that was also included for me written from one person with Severe M.E. to another. I could relate so much to the words that were written inside and it really meant a lot to not feel so alone.

My parcel and card reminded me in my felt isolation of my life with M.E. that people are thinking of me and it helped remind me that I wasn’t alone. For me the smallest gestures and things in life mean more than anything, more than the big things. A message or letter from a friend, watching my garden from my bed, the warmth of the sun on my face, enjoying a nice cup of tea, fresh bedding and pyjamas and other little things.I feel more gratitude for these small things now since I became unwell, especially since my M.E. has become severe.

M.E. can be a very isolating illness. I don’t have any friends that I see in person; I only really get to see my care team, carers, nurses physios etc. and close family but the interaction I find exhausting. I don’t have many friends and my only communication with them is either on WhatsApp where I message a couple of my friends but mainly I write to my friends. However I’m not always well enough to use my phone or write. I love pen palling and putting mail up in my room and writing letters is really important to me. Looking at the mail put up in my room brings me a smile especially on my bad days; the cards remind me how loved I am and that I’m not alone. Some of my friends and pen pals have M.E. too and all my friends have the understanding that because of my health I’m usually slow to reply, or I might only give a short response like a postcard which I really appreciate. Since becoming ill I’ve come to realise who my true friends are and the people that matter in my life.

I’ve also raised money for Smile for M.E. in the past through selling handmade cards; all together I’ve raised over £50 for the charity.

I do have to be mindful not to overdo it when I get lost in my creativity and cause myself to have bad Post Exertion Malaise(PEM) from not being mindful of how much I’m doing. I’ve discovered a list of low energy crafts that I can do from my bed. I’ll also break the process up; on my good days I’ll prepare the card at my craft desk where all my supplies are and then I’ll put it together another time, again I can do this from my bed. My over bed table has been a great investment, it was something I bought when I moved into my home; I also wanted a space for a craft corner in my new home so I have that space too with a desk and storage for my craft supplies. On my good days I can sometimes spend some time at my desk in my craft corner writing letters or crafting.

I think having a hobby of any kind can really help when you have a long-term illness. This could be anything, whatever takes your interest and you are able to do it not only helps you cope physically by giving you a distraction from your symptoms but it can help you emotionally too. Finishing a craft project for me gives me a sense of achievement.

As well as crafting I enjoy laying in bed and listening to books, sometimes I’m able to read; I like podcasts too. I enjoy blogging and I try to help others with M.E. and other chronic illnesses and disabilities through my blog.

There’s this quote I love: “there are things that are possible; things that are impossible, but otherwise I think that within my restrictions anything is possible.”

We can’t do everything but within what we can do we can do anything!

It is difficult living with M.E. in so many different ways. The hardest aspect I find is the unpredictability, not just struggling to predict one day to the next but struggling to predict one hour to the next. In the morning things can be manageable but in the space of an hour I can be struggling to function to do the simplest of things in extreme pain, too exhausted to pick up a bottle to drink, unable to tolerate most of my senses, a brain full of fog that struggles to function and so much more. No amount of rest during the day will reset my broken batteries so I have to just try and remember to do every pacing and activity management tool I know and most importantly listen to my body.

It’s been a struggle to get specialist services.I became ill in 2013 after a bad case of the flu despite being vaccinated. I became so ill I had to leave University. I eventually went to my GP but I just repeatedly was told I had Post Viral Fatigue Syndrome and with rest I’d soon recover. I never did. Eventually in 2017 a neurologist who I was seeing for something else assessed me and diagnosed me with M.E. but he didn’t explain it to me. I’d never heard of M.E. before and so I was left to go home and work things out myself and how to live with this illness. Back then my M.E. was moderate but it’s declined and now it’s classed as severe. We don’t have access to specialist services in our NHS Trust but currently I have a supportive GP who is trying to refer me to a specialist M.E. service that will take on out of area patients.

Despite the lack of specialist services I have been lucky after a long battle to get the care I need though there is a huge shortage of PAs. I’ve also been lucky to get a wheelchair from the NHS and recently I bought a wheelchair power add-on, my Batec which has been life changing. I’m also now waiting for my new wheelchair to arrive in the next few weeks and that will be much better for me as my NHS wheelchair no longer meets my needs. I’m also glad that I’ve been given the equipment I need to give me comfort and independence like my profiling bed, air mattress and bath lift; I’ve had some great Occupational Therapists and Complex Care Nurses over the years who have wanted to help improve my quality of life. I’m grateful for the community services like the nurses and physios and other professionals who come out to me. I’m also so amazed to have my own home that’s adapted for my needs. So I have a lot to be grateful for, but getting all of it has been a struggle at times to one degree or another.

I think more needs to be done to increase access to specialist support including making the support virtual or bring it to people’s homes. As well improve access to community care, like GP and nursing and community therapy teams and also improve social care services. On top of this improvements inpatient treatment care also need to happen too. Make people with M.E. feel believed and listen to what their individual needs are and meet those needs in all sectors of care. As well more education among health and social care professionals on M.E. is also needed. Care shouldn’t have to be a postcode lottery.

Naomi Gilchrist

Website: www.agirlcallednaomi.com

Instagram: @naomis.broken.batteries, @handmade.by_m.e, @agirlcallednaomi

Fundraising

Thank you to Em who is currently fundraising for us by selling their hand drawn ‘Coo Beans’ stickers. Contact Em to buy: @em.powered.autistic. Thank you Em for your kind support. They’ve shared that 37 out of 100 stickers have already been sold and raised an amazing £69 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.

Thank you’s

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 those who have kindly donated items for us to use as a special touch item within our Smiles, we are looking forward to sharing about the wonderful items soon.

Another special thank you to Rob and Excelsior Lodge who hosted another fundraiser for us with their Ladies Night, we will share more about this soon.

Thank you for taking the time to read our newsletter.

Smile For ME

xx