June 2023
Hello and welcome to June’s newsletter. Hope you have had the best month possible.
Carers Week
This month during 5th-11th June we celebrated Carers Week. Carers Week is an annual campaign in June to raise awareness of caring. Smile For ME have joined in with this event since 2018 as we want to highlight carers of ME sufferers. ME doesn’t just affect those suffering, it affects those around them who have to take on the role of being a carer.
We celebrated some of the wonderful carers of ME sufferers by sending 48 special Bear Hugs Smiles, quadruple the number of a regular month of Smiles, to thank them for all they do and show them how much they are appreciated.
Sending a big hug to those caring for a loved one. You are amazing and everything you do is much appreciated not just during Carers Week but always.
“Rather proud of myself, keeping this secret to myself for over a week! Massive thanks to Smile For ME for organizing Smiles for Carers week, and for accepting my nomination for a very special person, who has dedicated the last 15 years to caring for me.This was a wonderful surprise for my husband today, he was very surprised and very happy with his Bear Hug box!”
“This has been one of the hardest things I’ve ever had to go through so grateful to have you by my side .You make me smile on my hardest days , so grateful of all the things you do . I know you find it hard at times but you’re doing amazing so glad you love it. Thank you Smile For ME for sending this to my amazing Mum . And all the amazing carers and ME fighters”
“My mum loved her @bearhugsgifts for #carersweek Thank you”
“Really wanted to post this earlier but I wanted to wait until grant had finished work so it wouldn’t spoil it. Got those who don’t know this week is carers week. Which I know your thinking ‘but he’s your fiancé’, well it’s possible to be both. Without grant I would probably starve to death since he does all the cooking. He doesn’t see taking care of me as a chore, he see’s is as an act of love. I often feel bad that I can’t give back as much in terms of helping around the house. He is so selfless when it comes to helping me with anything I need. Because without that help we wouldn’t be able to do normal couple things as my energy would of already been gone. Every year @smileforme does a special box dedicated to those who care for someone suffering with ME. I nominated grant because he deserves to be recognised for everything he does for me. Thank you for accepting his nomination he loves his box (there was chocolate but it didn’t last very long)”
“I would also like to send my thanks to Smile for ME. My husband’s surprise box arrived today & he was so moved, we had tears. Nothing could repay his kindness, help & love over these past 6 years but it made me so happy that he was so touched by this gift. Thank you to everyone involved. Today was a good day! xx”
“I am so chuffed to receive this lovely present. What great ideas for what to include in this surprise Smile, that was just perfect. Thank you Natalie Hay for nominating me. and thank you Smile For Me for including carers. I love the box too.. I am a box saver! xxx”
“Thank you so much to the fab @smileforme @bearhugsgifts for my sister’s Carer’s Week gift. She is so surprised and touched”
“#carersweek i nominated my wonderful daughter to receive a @bearhugsgifts because of all the help and care she gives to me daily! She’s the best and still so young. She deserves this and she was absolutely thrilled(& surprised) Thankyou! ????”
“Thank you for my bear hug, it was a lovely surprise and it means a great deal xxx”
“thank you so much for sending a hug to my husband, such a amazing charity you have definitely put a smile on both my husband & myself as well as a few emotional tears”
“My husband was so surprised and happy to get his gift box last week. He has been absolutely amazing over the last 3 years! We reconnected during the first lockdown after losing touch for 22 years and he made the 400 mile round trip to see me every other weekend so he could be part of my single-parent bubble and look after me as I was basically housebound. Love blossomed and we got married in 2021 and his love and support have meant to much to me, especially as he has gone through some extremely stressful times himself. Seeing his face when he received the parcel and then when he opened it really made my heart smile! Thank you SO much to everyone at Bear Hugs and Smile For ME! x”
“Thank you so much for making my mum feel appreciated. She was so surprised by her gift. The ‘hugs’ mean a lot because she’s unable to physically hug me.”
“Thank you so much for my beautiful box of treats smile for ME – such a lovely surprise. Thank you Sarah Jayne for nominating me x”
A special thank you to Bear Hugs for helping us to send Smiles to some amazing carers again this year. Since 2018 for our special event Smiles for Carers Week we’ve chosen to partner with Bear Hugs and they’ve sent their wonderful Hugs to our Smiles nominees.
Bear Hugs is a brilliant company which sells personalised postal gift hampers in a signature box which opens to reveal two outstretched paws and a ‘Consider this a BearHug’ message. Founded by Faye, a chronic illness sufferer, they spread kindness through a thoughtful hug. For every 50 Bear Hugs boxes sold, they send a special personalised gift box to someone affected by chronic illness or disability through their Hug Nominations. We love working with them and being able to support the wonderful work they do whilst they help us to acknowledge and thank carers of ME sufferers.
Thank you Jared, Faye and Bear Hugs for your help in creating smiles.
Carer appreciation
During Carers Week we asked on social media for you to share your carer appreciation so we could help spread the love and thanks for some wonderful carers.
Share a story
This month’s share a story is by Claire Tripp. Originally written for us in 2019 Claire shares her personal experience of being a parent carer, raising awareness of what it is like to be a carer of an ME sufferer for Carers Week. Thank you Claire for sharing your experience of being a carer.
When my children were younger I had hoped that by the time they turned 17 and 14, I would no longer think my husband was getting the better deal by going out to work every day, while I stayed at home playing homemaker and primary caregiver. I had expected that by then I would have reclaimed my sense of self and would be forging my own way through life, setting the world alight in whatever career I had chosen. Indeed, with a sense of having done my bit, the children becoming more independent, and after over a decade of balancing my need for stimulation with my parental responsibilities, I had in fact already started to re-establish a work life for myself outside of the family home.
But then Emma suddenly got ME at age 14 and I eventually gave up work to become a full-time carer. My days are now, once again, dedicated to looking after her. I manage every aspect of her life, including medical, education, mental health, social. I pore over research, trying to make sure she has the best chance of recovery available to her, and I collect good news stories like a magpie. All the while, fighting hard, not just to get her what she needs, but not to forget my own dreams and aspirations.
During Carers Week, we are reminded that the responsibility of caring for a loved one is often something that only you as the carer and the person you’re caring for fully appreciate (and the latter only if you’re lucky!) Carers in this sense are unpaid and are caring for a family member or friend with illness, disability or who needs support later in life. A child, be it an adult child or a young child, can sometimes have to care for their parent, a reversal of the usual parent-child dynamic. Or a partner has to care for another partner – once a relationship of equals now navigating a disproportionate shift in dependence and companionship.
But being a carer for your own child is a curious thing. To all intents and purposes the balance of care hasn’t changed. I still have a child whom, as her parent, I look after and provide for. When she is sick, I bring her meals in bed, love and support her, and make sure she gets all the help she needs. So really, am I actually seen to be doing anything special at all?
Of course those who live it know it’s hard to fully appreciate just how difficult this is. All parents share the sorrow of missed experiences and lost opportunities, or of an uncertain future for our children. It’s not only parents of children with ME who have these worries and emotions. Every parent wants the best life for their child, and ultimately has to help guide them through the obstacles they meet along the way.
But it’s the weight of additional responsibility that tips the balance. As a parent carer of a child with ME I get very little guidance from experts or otherwise. But at the same time I have the, often intolerable, pressure of having to always make the right choices for Emma, when there is no one to help me with what those are. The threat of involvement from child protection agencies is very real. Many of the issues I’ve experienced over the last 3.5 years is when others, including professionals, perceive that I’m not doing everything I can, or they believe I’m not doing it as well as they think I should be.
Awareness of ME has increased since Emma has been ill, at least in my own sphere of experience. But not, I think, true appreciation of the devastating impact it has on lives, not just for the person who has it, but also the carer. We always say that to truly understand the effect of ME on the patient and their immediate family is to live it 24/7 over a period of years. Because it’s the sheer relentlessness that gets you down, day in day out with just a dull light at the end of the tunnel that flickers occasionally to remind you it’s there.
We tell ourselves, and anyone who will listen, that our children are developing resilience, showing courage and determination. We proudly share how they are coping, for so long with something so difficult and still managing to laugh and smile. But how often are we also talking about ourselves? Vaguely hoping to hear that same praise echoed back to us? For we are also showing strength and resilience and we are still going when there are days when we just want to give up.
Evidence shows those worst affected by loneliness are parent carers looking after disabled children under 18 years old, being nearly ten times lonelier than the general public. My social contact nowadays is mainly via the internet and I gravitate towards people who are sharing my experience. There is huge consolation in finding other people who understand what you’re going through. People who recognise that when I answer OK to “How’s Emma today?” I don’t mean everything is fine, but that it’s just a day where I’m counting my blessings that it’s not worse than yesterday.
In a strange way, my life has started to mirror Emma’s life. I feel I am also living the daily drudge of having ME. Unlike when my children were younger and my social life evolved through mother and toddler groups, I now find myself stuck at home with a child on the verge of adulthood that isn’t well enough to leave the house and requires more help than a 17 year old should. My plans too have to be cancelled at the last-minute because she’s having a bad day. I too can go a whole week without leaving the house except to do a food shop. I too am experiencing pain watching my daughter live a fraction of the life I want her to have. And my future too should have been brighter than the life I’m now living.
This is the reality of life for many parent carers looking after ill or disabled children, often seen as doing little more than is expected of them anyway. It’s not just parents of children with ME. But the purpose of Carers Week is to raise awareness of all unpaid heroes who deserve more recognition and support for what we do every day for our children, family or friends.
My fight is also for ME equality and for this disease to be treated with the respect and priority it deserves, according to its severity and its prevalence. Carers who are looking after people with ME are entitled to the same appreciation and awareness as those who are caring for other people with other conditions and illnesses. Because to understand the disease is to acknowledge the lives of the carers who in their own way are also living with ME every day. And the life we’ve had to forsake in order to do it.
Fundraising
A special thank you and good luck to Tarryn.
“On Saturday 8th July I will be doing a skydive. Some people may think doing a skydive is crazy, but many others also think I’m crazy considering I’ve never been in a plane.
So as some people are aware and others who are not when I was 12 I was diagnosed with ME. Due to how poor my health I had to be home schooled from year 9. It was a very difficult time of my life and also very isolating. I was bedbound for 6 months and house bound too. There is such little awareness about ME so by doing this skydive I hope to raise awareness but also vital funds for a charity that brought me a smile when I was in my darkest moments.
Not everyone is as lucky as me, I have recovered so well compared to how I was, but wish to support others too.
So if you can donate I’d really appreciate it.”
Donate: www.gofundme.com/f/tarryns-skydive
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
Thank you to those who have generously supported us this month. Without you we wouldn’t be able to continue sending Smiles to ME sufferers and their carers so we can’t thank you enough.
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