Hello and welcome to July’s monthly update. Hope you have all had the best month possible.
12 smile presents were sent to both ME sufferers and their carers 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 make up, pamper items, candles, books, lego, cuddly toys and slippers. They are always lovingly wrapped in our signature blue and white spotty wrapping paper, decorated with a bow to make it extra special and posted to nominees to brighten their day.
We love hearing that your smile present has arrived safely and hopefully made you smile. Your kind messages mean a lot and we love seeing your pictures. Thank you to those who sent them to us.
Each month we ask on social media what 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.
Share a story is a new segment where we share a story from an ME sufferer or carer about a personal experience of living with ME to help raise awareness and remind others they are not alone. If you enjoy writing and would like to be featured in an upcoming month please email us at firstname.lastname@example.org. Disclaimer – All stories shared as part of share a story are personal to the writer and express their individual views and experiences and do not necessarily reflect the views of Smile For ME.
This month’s story comes from Holly. Thank you Holly for writing about your personal experience of ME.
My name is Holly, I’m 27 years old and I was diagnosed with ME in 2008.
Something had been wrong for a while, at least two years. I had awful leg pains after doing any exercise and had to stop doing sports at school, I felt exhausted all the time and fell asleep at school and when out with friends, I would often feel faint and confused, and I was becoming increasingly depressed and ‘out of it’. I knew something was wrong but I didn’t know what it was. I felt an increasing sense of dread.
I was doing my mock GCSE’s at the time and I walked home after an exam and then collapsed. My body finally gave up. After years of investigations, at this point the doctor said it had to be ME as it was nothing else and I was told to pace myself. I went to school part time and joined in with social activities as much as I could. I tried to carry on living a normal life as best I could. Most of my friends were great; looking after me and making me smile but I did become isolated because I wasn’t like them. I couldn’t keep up with them and there was this constant fear of overdoing it. I started having ‘attacks’ when I did too much: all the muscles in my body would go into spasm and I wouldn’t be able to breathe or communicate. This was terrifying for me and everyone around me. I became more depressed and anxious, not only because this is a symptom of ME, but because my situation was depressing and terrifying. I could spend hours lying on the floor staring at the ceiling and became anxious about everything: travelling, germs, food, social situations (which I now know is OCD). I had to use wheelchairs and walking sticks which made me feel embarrassed and didn’t help much. I couldn’t sleep because my body was so alert it wouldn’t let me. I gradually deteriorated and my lowest point was probably winter 2010 when I weighed just six stone and was housebound. I had to learn to walk again starting with 5 minutes a day.
On the surface of it, not much has changed since January 2008. I still have ME. I still suffer from pains in my legs and spasm attacks if I do too much exercise. In fact using my muscles in any slightly strenuous way causes pain in the days afterwards. But what has changed is my mind. I am no longer afraid of ME and its symptoms which means I get less anxious about overdoing it or having a relapse because I know I can cope. Going through lots of pain and then not feeling afraid of it anymore makes me feel kind of invincible sometimes. No matter what life throws at me I think that mentally I could probably cope. I still get anxious and have OCD, it’s natural that my body is trying to protect me, but I can talk myself down and be rational and calm. Sure, I have bad days when I feel frustrated and have a cry but I don’t sabotage myself by staring at the ceiling and running through horrible scenarios in my head anymore. I have had to leave more educational courses and jobs than I can count but I now have a part-time university Administrator job I love and last year I finally completed my Art History degree with The Open University; with double the points needed for a first-class. I am so proud of these achievements. I process my emotions now instead of internalising them which I think is helping massively. I don’t worry about what other people think as much and am open and honest with them about my needs and feelings. I have a much better relationship with my body by listening to it and giving it what it needs. This isn’t to say that unhelpful thoughts and behaviours don’t come up, they do, but I stop them in their tracks. Knowing that I can be in control of my mind is empowering. Ultimately, if I can help myself to be in a calm healing state more than a stressed state I could recover from ME; maybe never completely but enough to live a full life. It is because of this that I am positive about the future. My diagnosis hasn’t changed but as a person I’ve grown and I like who I am. I’m mentally strong, confident and positive and I’m proud of how far I’ve come. Maybe in another decade I won’t have ME anymore, but maybe I’ll just be an amazing person with a happy life even if it’s still here.
My blog www.hollyhealing.wordpress.com and Instagram account @holly_healing aims to dispel myths about ME, mental health conditions and disability in general. It aims to entertain, to inform and to share the benefits of taking time to listen to your body and explore your true self. This is the story of my healing journey.
A special thank you to those who donated to us this month and those who continually do so, your kindness means a lot. We are so grateful for your support which enables us to continue creating smiles for ME sufferers and their carers. Thank you Pauline, Steve, Tracy, AnnMarie, Dionne, Caroline and Lizzy you are all amazing.