Hello and welcome to May’s newsletter. Hope you have had the best month possible.
Merryn’s Smile Day
On the 13th May we celebrated Merryn’s Smile Day. We sent 48 special Smiles, quadruple the number of a regular month, to Severe and Very Severe ME sufferers in Merryn’s name.
Our Merryn’s Smile Day Smiles are slightly different to our regular Smiles. We offer 5 options, balloons, cosy accessories, cuddly toy, flowers or plant which are then personalised to each individual. The Smiles are not wrapped as opening presents with Severe ME can be difficult in many ways, however they are still packaged with love which Merryn radiated. Inside each Smile was a rose quartz heart as Merryn loved rose quartz.
You can read more about Merryn’s story and who she was as a person written by her Mum Clare on our Merryn’s Smile Day page: smileforme.org.uk/merrynsmileday
A special thank you to Claire who beautifully personalised the eye masks with the recipient’s names.
Another special thank you to our lovely local shop Finishing Touches for their kind support with helping to supply the Jellycat cuddly toys.
Finally a special thank you to Emma who kindly made and donated the wonderful crochet sunflowers which were sent in some of our Smiles in Merryn’s name.
ME Awareness Day
Share a story
This month’s share a story is by Olivia Meads. Olivia raises awareness of ME, a neurological classified disease, and how at age 15 her life changed irrevocably. Sharing a snapshot of her symptoms and her wishes. Thank you Olivia for sharing your story.
I’m Olivia Meads, 27 and live in Wigan. I have Severe M.E and several other related illnesses, including PoTS. I’ve been ill for 12 years and for the past 10 I’ve been classed as Severe and 95% bedbound. This is a bit of my life over the past 12 years of illness.
I got ill at age 15 and my life has changed irrevocably. Until then I had a very busy and active life – I used to do a lot of dancing and acting (street dancing was my favourite), photography, I’ve always loved learning so I was top of the class at school, on the weekend going to rock and emo gigs or shopping with friends. I had to give up all my hobbies as soon as I got ill because I didn’t have the energy for both hobbies and school. I got offered a place at university to study journalism and English, but by then I’d declined to the point that I was Severe, with my Mum having to give up work to become my carer. I had and still have dreams of becoming a journalist, yet I now struggle to read or write due to brain fog. Writing all the symptoms I have could fill up a notebook but here is a snapshot of the ones I struggle most with:
- Bone-crushing fatigue, as if I’ve ran a marathon, have a hangover and have a bad case of covid all at once
- Severe pain only slightly relieved by a fentanyl patch, the strongest prescribable painkiller
- Light, noise and smell sensitivity
- With the cross-over of PoTS, I experience fainting, dizziness, unable to regulate temperature, high heart rate and low blood pressure
- A whole host of sleep problems
- Constant nausea which meant for several years I was severely underweight
- Cognitive problems – brain fog, poor concentration, a struggle to find words and speech paralysis
- Post-exertional malaise – which is a worsening of symptoms following even minor activity (a recent example for me is coming downstairs for half an hour to watch the coronation)
- In the past I have had stroke-like episodes and paralysis
A 2015 study comparing the quality of life in 20 conditions showed that M.E had the lowest quality of life out of all compared illnesses, which included 4 types of cancer (lung, breast, prostate, colon), stroke and chronic kidney failure.
The world health organisation has classified M.E as a neurological disease since 1969, but public understanding is still very limited and often completely misinformed. When you get into Severe M.E things are even worse. Not long after being diagnosed I had a friend say to me ‘I wish I could stay at home all day like you, I could watch TV and stay in my pyjamas’. I’m not alone in being told this. But when people say this they’re thinking ‘I wish I could have my normal life and be able to have a break sometimes and stay at home’, they’re not realising being ill and mostly bedbound is my life, not something I could choose to do when I want to. These types of comments and misconceptions are even harder to hear because it’s the opposite of what most people with M.E’s personality is. There are some common personality traits seen in M.E patients – perfectionism, highly driven, motivated, ‘type A’, so the reality is that if we weren’t ill we have busy lives, as we had pre-illness.
A big issue and something I’d like to focus on is having a question mark over my future. This is the same for everyone with Severe M.E and to a lesser extent mild & moderate M.E. I find that the younger the person became ill the more difficult it is to accept this reality of uncertainty. The younger you become ill, the less you’ve been able to achieve and experience in life and the fewer milestones you’ve reached.
For the healthy people reading this, try and remember a period where you felt really ill, maybe you had flu or covid. Now remember how horrific you felt and you needed help looking after. Now imagine that is your life forever.
I wish for all the big things – to be able to dance & act again, to get a degree, to get a job, to travel, to drive, to move out and have a relationship, but I wish for the little things too. Here’s a smidgen of the things that seem small to most, that I wish I could do both now and in future, and don’t know if I’ll ever be able to do.
I wish I could:
- Have a shower independently and when I want instead of only being able to have a shower every 8 weeks and my mum having to be in with me. The rest of the time, I have bed baths from my Mum
- Go into the kitchen and grab a glass of water or a packet of crisps instead of having to have all my food and drinks brought to me
- Go to the hairdressers and be blonde again with a nice cut instead of the hairdresser coming to my house every 3 months and getting a dry cut, in a style that doesn’t matter that I’m lay on it permanently
- Read a physical book instead of only being able to listen to a small section of an audiobook and then having to relisten to the same serious days later, because I’ve forgotten what was said
- Sit up all day instead of having to be lay flat 95% of the day
- Be able to leave the house and go to a café, go on a country walk or visit a museum instead of only being able to leave the house for something not appointment related twice a year, for less than an hour a time, pushed in my reclining wheelchair
- Visit my grandma instead of Skyping her
- Go to the Cinema instead of watching a film on my iPad over 3 sittings at home
- Shave my own legs instead of my mum shaving them for me in bed
- Take my Mum out for a meal on Mother’s Day and my Dad for a drink on Father’s Day instead of it just being like a normal day where they have to care for me
- Have real life friends and go out and do things with them instead of only having online friends and not being well enough to go out
Before I got ill I had not a minute, I was forever on the go. I never thought my life would end up like this. I was just an independent, passionate, driven 15 year old getting on in the world. I’m now a bedbound, extremely poorly 27 year old, who’s lost the last 12 years and who knows how many more. I’m not alone, in the UK 250,000 people have M.E, with 25% of us having it at a Severe level.
14th May was this year’s Blue Sunday, The Tea Party For ME. Thanks to the creator Anna Redshaw the ME community, their family, friends and allies came together and raised an incredible amount of money for ME charities.
We joined in by enjoying some personalised vanilla and white chocolate macarons.
A massive thank you to everyone who kindly chose to support Smile For ME with Blue Sunday. From The Tea Party for ME to the different fundraising events people held in honor of Blue Sunday, all the generous donations will make a big difference to us. An amazing £2,342.22 was raised for Smile For ME which will enable us to continue sending Smiles so we can’t thank you enough.
A raffle for ME
Thank you Joanna Baxter, amountaintoclimbform.e, for holding a raffle for ME which supported three charities, one being Smile For ME. The wonderful prizes were a celebration of the talent that is in the ME community and shared alongside were stories of some of the contributors. Thank you to Joanna, everyone who donated prizes and everyone who bought a raffle ticket. An amazing £1,500 was raised and split between the three charities so a brilliant £500 was added to Smile For ME’s Blue Sunday total.
Cosy Gamer Lo’s Charity Streams
Cosy Gamer Lo supported us by streaming on YouTube throughout May. Thank you Louise for choosing to support us and for your kind donation of £104.09 which was added to Smile For ME’s Blue Sunday total.
Louise’s final ME Awareness Charity Stream in support of Smile For ME is today, 31st May, 7pm BST. Watch her stream to support: Cosy Gamer Lo.
‘Be Kind’ charity print
‘Be Kind’ ME Awareness charity print by Alex Flower.
Designed by Alex and intricately engraved using traditional tools onto endgrain Lemonwood. Each print is then hand printed by Alex directly from the wooden block. Printed using a highly pigmented oil based black ink on beautiful, sustainably handmade warm white 170gsm Japanese Bamboo paper. The printed area measures 3.2×3.2 inches secured to a 6×6 inch mount, and will fit into a 6×6 inch frame. £10 from each print sold goes to Smile For ME.
Thank you Alex for kindly choosing to support us with your talent.
Clover the cockapoo and their human Becca held a ME charity raffle with some pawsome prizes. Thank you Becca and everyone who got involved. A wonderful £110 was raised and split between two charities so £55 is on it’s way to Smile For ME.
Handmade paracord ME awareness ribbon keyring by New Forrest Paracord. Thank you Jude for kindly supporting us with your skills with knots learnt at Sea Scouts.
The keyrings are made using blue 550 paracord and a 25mm steel split ring. The finished size is approx 9cm high by 4.5cm wide. 10% of sales is donated to Smile For ME.
Available to buy: www.ebay.co.uk/itm/134554154141
Bake 4 MECFS
There is still time to enter Bake4MECFS’s The Great Outer Space Bake Off. Everyone is welcome to get involved, you don’t have to be an ME sufferer or carer to join in.
Step 1 Donate
Step 2 Bake
Step 3 Tag/email/connect
For more information check out Bake4MECFS: www.bake4mecfs.com
Donate to Smile For ME: www.gofundme.com/f/bake-4-me-cfs-smile-for-me
Thank you to all those who generously chose to support us with your coronation bakes and now space themed bakes. Thank you Jennie for choosing Smile For ME to be one of the charities Bake4MECFS supports.
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 big thank you to everyone who has supported us this month. From the supportive messages to the generous donations, your kindness has meant a lot. We would not be able to do what we do without your generosity so we can’t thank you enough.