July 2022

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

Smiles

12 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 included were an art easel set, mini animal crochet crafts, unicorn colouring book and pencils, Harry Potter socks, blankets, smiley face art print, horse ornament, pamper products, crystals, candles, mugs, crisps, sweets, liquorice and chocolate.

“I’ve had a really hard week but today a knock on the door definitely put a smile on my face. My wonderful fellow warrior Jane Webster nominated me for a Smile For ME & it really couldn’t have come at a better time. Thankyou so much Jane & thankyou to all at Smile For ME. You’re amazing”

@the_everyday_me_

Having people in your life who brigten you day ?After an awful few weeks I needed this today. #forevergrateful #mecfs #smileforme

♬ Fly Away – Tones And I

Support us

We are so grateful for your kind support because it enables us to continue sending Smiles. Listed on our ‘Support us’ website page are multiple ways you can do so. One of the ways you can support us at no extra cost to yourself is through AmazonSmile and Easy Fundraising.

Thank you to those who already support us. All the little amounts raised whilst you are shopping adds up and so far we have received an amazing £580.63 from AmazonSmile and £1128.61 from Easy Fundraising.

For a mobile/tablet device

1. Download Amazon app on your device and open it
2. In the main menu tap ‘Settings’
3. Then tap ‘AmazonSmile’ and follow the on-screen instructions to complete the process
4. Shop like normal and we will receive 0.5% donation from your net purchase price on items that are eligible for AmazonSmile donation

Please note renewals are required twice a year to keep generating donations when you shop in the app.

For desktop

1. Go to https://smile.amazon.co.uk/ch/1185760-0
2. Pick ‘Smile For ME’ as your chosen charity. Smile For ME will then appear at the top of your screen near the Amazon Smile logo confirming you have selected us (You only need to select us once it will be saved for future purchases)
3. Shop like normal and we will receive 0.5% donation from your net purchase price on items that are eligible for AmazonSmile donation. Remember in future you need to start at smile.amazon.co.uk instead of amazon.co.uk each time you shop in order for us to receive a donation. There is a browser extension called Smilematic which if you install will automatically redirect you from amazon.co.uk to smile.amazon.co.uk every time.

For a mobile/tablet device

1. Download Easy Fundraising app on your device and open it
2. Click ‘Create Account’
3. Search for ‘Smile For ME’ and click ‘Support This Cause’
4. Follow the on-screen instructions creating an account to complete the sign up process
5. Search for retailers through the app, shop online and we will receive a donation when you spend

For desktop

1. Go to Smile For ME’s Easy Fundraising page
2. Click ‘support this cause’
3. Create an account with Facebook or Email and enter your details
4. Click ‘add the donation reminder’ to add the extension to your browser
5. Shop online as normal. Donations are available through 3,800+ online brands and retailers. When you are on the website of your choosing if it is an eligible shop you will see a notification in the top right hand corner saying ‘Great news, up to __% free donation on this site’ Click ‘Activate donation’ and we will receive a donation when you spend

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 email us at smileformecharity@gmail.com.

This month’s share a story is by Anna. Thank you Anna for sharing your story.

As a child I used to dream of the day when I’d be allowed to lie in bed all day. I naively thought that when I was an adult I’d be able to do what I wanted, when I wanted, and that the more time I spent in bed the better. That was until the day I was forced to lie in bed with no way to know if that was something I’d have to contend with for the rest of my life or not. Having dreamed of being able to lounge about, living in pjs and comfy clothes, all of a sudden all I wanted was to be able to get up, go for a run and work full time. It’s just typical that we can want something so, so much, until it actually becomes our reality and we realise it wasn’t all it was cut out to be. I think we all do it though – when I was a child I used to be desperate to have curly hair and then, in my teens I discovered that it was actually pretty curly if I looked after it well and all of a sudden all I wanted was for it to be dead straight!

To give you a little background, I’m 25 and was working towards my dream of becoming a clinical psychologist when I became unwell. I was studying full time down in Southampton and was also working bank shifts for a local CAMHS Psychiatric Ward and as a Clinical Support Worker for Solent Mind. I had a decent social life, never missed a lecture (apart from one in freshers – the hangover was horrendous ), went to the gym and was training for a marathon. On the outside my life looked amazing – and that’s what I wanted people to see. On the inside, however, I was falling apart mentally and physically. I was diagnosed with Fowler’s Syndrome at the start of my training at uni and it turned my life on its head. My mental health plummeted and I spent a long time sectioned under the mental health act. My life revolved around my eating disorder because it was the only thing I could control and it very quickly became apparent to people that I was struggling with my health more than ever.

My fatigue was pretty well managed whilst my mental health was so bad. I had issues with energy but nothing that was a huge impact. But then I had back to back Kidney infections that frequently turned septic and I was later diagnosed with M.E. as a result of Post Sepsis Syndrome. I felt so angry with the world – I worked so hard with my mental health team, got to a place where I could live independently and found the perfect flat. I was ‘back in the world’ so to speak and the doors had opened – it was my oyster. But soon my world shrunk and shrunk until it was the four walls of my flat and occasionally going to the hospital. I began to grieve for my old life. I was desperate for some sort of normality – I tried to bargain with my body: ‘I won’t try to run today but if you could just let me walk to the end of my road’ – over and over again and very quickly learned that that’s not how M.E. works. No amount of bargaining gets your body to function as it should.

Lots might argue that being a psychologist should or could have prepared me or given me the tools I needed to cope. And it did to a certain degree but there was still a lot to learn. The one thing I wish someone had sat down and said to me right at the start was ‘it’s okay to grieve for your old life’. We know SO much more about grief now than we ever have before. A lot of people still assume that grief is primarily something that happens when someone dies – we all know about it in that context. But can’t we argue that part of us dies when we develop something as debilitating as M.E.? I know I certainly felt (and still feel) that way. It takes a lot of adjusting to our new kind of normal – a normal that is unpredictable, difficult and forever changing. We might have feelings of grief for the rest of our lives – like a continuing spiral or a river that ebbs and flows. But that’s okay. Let yourself sit where you are right now, let yourself feel the all the feels. And remind yourself that it’s not going to feel the same forever.

 

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 because it enables us to continue sending Smiles to those affected by ME. It means such a lot thank you.

 

Thank you for taking the time to read our newsletter.

Smile For ME

xx