November 30, 2019 1 By Smile For ME

Hello and welcome to November’s newsletter. Hope you have all had the best month possible. We have just had our 7th Birthday and this year is a special year as we upgraded our registration and are now Registered Charity Number 1185760. Thank you so much to everyone who has supported us over the years it really means a lot 💙

 

12 smile presents were sent to both ME sufferers and carers of all ages this month. Our smile presents change all the time as we personalise them with each person’s likes and interests. Some of the items included this month were bath bombs, blankets, teddies, coffee vouchers, xbox vouchers, polly pocket toys, craft sets, mugs, postcards, woolly hat, woolly gloves, pamper sets and sweets.

Thank you to those who sent us lovely pictures of you receiving your Smiles and to those who sent kind messages.

 

Each month we ask on social media what has made you smile? We love hearing the responses and hope by sharing some of your smiles it can help others to find a smile too. 

 

This month’s share a story comes from Hannah Wallace. Thank you Hannah for sharing your story.

I never thought as a 17 year who was wild and full of life, that things would change forever and I would be in my 30’s living a very different life than what I envisioned. I hope whoever reads this can feel inspired that just because things don’t turn out as you would imagine, you can find a way and yes it may be tough at times but it is possible to find grace and choose life. 

I woke up one day feeling so ill I could barely get out of bed, after ignoring my body for weeks thinking I felt off because I was over doing it. This was where my journey began with a severe bout of glandular fever, which led to an ME/fibro diagnosis. Which left me unable to do regular life, I felt like I had failed and it took me a long time to accept it, which lets face it is perfectly human, when we go through a massive trauma. I’m sure anyone reading this knows all the symptoms that floor you and what’s worse everyone experiencing their journey with it can be different. I watched all my friends go off to university, believing that I would go back to what I considered normal life and that never quite happened. 

The first few years I lived with a deep inner battle, the fight to try everything to get myself better and nothing really working. Eventually I made a deal with myself, I guess you could call it my surrender, the place where I met myself truly and decided if I couldn’t nail fixing my body I could work with my mind and learn to master it so what ever was going on I would be able to look at this differently, and help heal my soul and the trauma this whole situation brought about. 

Learning to accept help and be open to receiving, learning to be open to those around you, learning that you can find light in the darkness, learning you can find ways to make things work, and learning that it’s important to see what may not work for one person may help you. Now don’t get me wrong this wasn’t and isn’t a walk in the park but what I know is this, when we choose to walk that place, it helps us heal on a level. Often in society we look at healing as something having to look a certain way and this blocks us and often stops us taking the path and journey we need to take. It can be deeply painful and frustrating at times but what we need to know is getting the right tools and support can really help, especially when things with your body don’t seem to be going in the way you want. It can be hard when you don’t feel heard with medical professionals, there’s nothing more frustrating and upsetting. I’ve learnt many times, it’s how you look at things that really has an impact.

I was lucky throughout this journey to have friends and family who supported and loved me unconditionally which I know helps immensely, I have never taken this for granted . But also when I came into a place of more acceptance and opened myself to talking to people online, it was so healing and helpful to come across people that had experienced much of what I had. This was liberating for me as often it felt very lonely, but I was also aware I wanted it to be positive interactions, so I made this an intention. 

Eventually as the years went on, after a long road, ten years in fact, I got diagnosed with Elhers Danlos syndrome and POTS, which was a humbling experience because my definitions of hope and acceptance again had to realign. Now my life is different from those around me, I use a wheel chair, and have to manage my life in certain ways. But I’ve made the best of it, and what I know is this I am more than my body and this situation, and this is not my identity, I’ve created a blog and podcast and I am writing a book. I learnt to dance to my own rhythm and even when that’s super slow it’s on my terms. 

I hope whoever reads this can feel inspired that it doesn’t have to be a total write off. My advice, feel all your feelings, cry when you need to, feel the frustration and anger and let yourself move through it. It’s safe to express it, getting safe in a body that doesn’t feel good is tough but is something that is worth working towards. No matter how small the baby steps are believe in them and trust your process. Don’t be afraid to fail if you set a goal and it didn’t work out and you had a set back. Be kind to yourself. Self care is number one, this will support you greatly, no matter how small the act. Let people help you, learning to be open to receiving can be really hard but resistance is even harder believe me. Don’t compare yourself or your journey to another’s this will eat you up from the inside. Focus on yourself, what works for you and the bottom line is we are all different. If you feel like you’re failing this is feedback to stop beating yourself and to find another way. Above all be kind to yourself, we often blame ourselves in these situations. This doesn’t help it hinders. 

I hope reading this helps someone to remember you’ve got this.

You can find out more about Hannah on her website hannah-wallace.com and listen to her podcast Finding Grace where she has talked to Jessica Taylor-Bearman about her experience of finding grace with ME.

 

Natasha and Thea have created a ‘PLEASE OFFER ME A SEAT’ pin badge which they are selling with profits going to Smile For ME. The pins are 3cm in diameter, made of light blue soft enamel and rose gold plating. They are available to buy on misstheabella’s Etsy. They hope having a pin will help you feel more confident asking for a seat when you need one. Thank you Natasha and Thea for kindly choosing to support us.

 

Thank you to Dionne, Pauline, Steve and Sophie for your generosity. Your kindness in choosing to support us means so much.

A special thank you to Spoonie Survival Kits who have donated an amazing £301.48 to us from their fundraising so far. They are still currently raising money for us until the end of the year so if you would like to support them you can do so by buying a spoonie necklace, spoonie kit or their book ‘Dear Chronic Illness’ with money raised being donated between Smile For ME and Project Parent.

spooniesurvivalkits.com

 

Thinking of those affected by ME as the festive period approaches and especially those who are too poorly to celebrate. Wishing you all a Happy Christmas. Lots of love