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 hope that by sending a special Smile to carers of ME sufferers during Carers Week we can remind them how much they are appreciated.
Carers Week 2021 takes place 7th–13th June and nominations are now open. You can nominate a carer of an ME sufferer for a Bear Hugs Smile by completing the nomination form. (Repeat nominations are now considered after the timescale of 2 years however new nominations will be prioritised)
Carers Week Smiles
Since 2018 158 Bear Hugs Smiles have been sent to carers of ME sufferers.
With our Carers Week Smiles we partner with Bear Hugs and they send their hugs to Smile nominees. Bear Hugs is a brilliant business founded by Faye, a chronic illness sufferer, to spread a little kindness and a thoughtful hug. As well as the wonderful work they do they offer and advocate for accessible inclusive jobs. A huge thank you to the whole Bear Hugs team for helping us celebrate carers over the years. We love working with you and we can’t thank you enough for helping us create Smiles.
Share a story
I was asked by Alice to share my experience of being a carer for my youngest daughter who has M.E. When I had written it, I shared it with a friend, who rightly pointed out that it’s mainly about Lucie…and not so much about me! She was right…it is. But I think that says a lot about my role as a carer, and probably every other carer too. It’s no longer about me…but I am still there somewhere. You might just need to look more closely…
In the autumn term of 2016, Lucie got a virus that she just couldn’t shake. She had had serious viruses before, but this one quickly felt different, and I remember sitting in our doctors trying to explain why, as her mum, I just knew this was something else.
Over the following months, she became increasingly exhausted, sleeping up to 17 hours a day. She developed chronic stomach pain, and couldn’t eat much. Every activity exhausted her to the point of being unable to get up for days.
Being in her final year of primary school, she was heading towards her Sats. She has always been studious, and worried constantly about missing school. My mornings were spent trying to wake her to get her to school…and then making phone calls to explain she would be late, or wouldn’t be coming. On the days that she went, we would often get calls to come and collect her early, and she would come home and sleep for the rest of the afternoon and evening. I was a teacher for 20 years, and was scared about the effect missing so much school would have on Lucie’s education. I remember that time as an endless worry…knowing that something was very wrong.
It was in the May that a friend of a friend happened to share a post about M.E. on Facebook. I’d had a friend at school who had had M.E., and in my mind I was already worried that this was what was happening with Lucie. This was when I was lucky enough to be put in touch with Claire, another M.E. mum, who has been a constant support to us since.
And so began the fight. It took 18 months to get an official diagnosis, despite knowing within a matter of weeks that we thought it was M.E. We had to fight our CCG to fund a referral to a specialist M.E. team. Everything was a battle. And all the while, she was getting worse. The day she should have started High School, she was in the hospital. She tried to attend school as much as she could, before we had to reduce (and then keep reducing) her timetable to a level she could sustain.
We had no professional support and were constantly worrying if we were doing it right. I spent hours researching, questioning and learning as much as I could.
As a mum, you just want to make everything ok, and as Lucie’s carer, this is probably the thing I’ve found the hardest to accept. No matter how much I want to make her better, there is nothing I can do to restore her health. Instead, I’ve tried to accept that this is a waiting game.
The initial months and years were the hardest in many ways. When your child has a life changing illness, you expect there will be something the doctors can do to help. With M.E. there is no treatment and no cure. At this time, I just wanted her to get better. I was grieving for the life she, and we should have had.
As time has moved on, I think I’ve accepted that this is how it is. Instead of thinking about what life should be like, I try to focus on what we can do now to make the best of things. With Lucie only able to attend school for 3 hours a week, we decided we needed something positive for her (and us) to focus on. This was where the idea for ‘In her name Lucie’ came from. We asked family and friends to pledge to complete a challenge on Lucie’s behalf, in order to raise funds for Smile for M.E. and IIMER. We needed something positive to come out of all of this, and have continued to support Smile for ME ever since.
In the strange times we are all now currently living in, I’ve found myself reflecting a lot on the time since Lucie got ill. When lockdown first started, I was asked a lot ‘How are you coping?’ How do you answer that, when you’ve been in lockdown with your child for almost 4 years? We aren’t talking weeks here. Both of our lives were placed on hold in many ways when M.E. came knocking…and there is no end in sight.
In all honesty, we have joked about how well prepared we were for all of this. Lucie and I have coped much better than many people we know…including Lucie’s dad…who despite living here…hadn’t experienced the true impact of having to stay home day in and day out until now.
Our lives are very different to how they might have been. But we are lucky to have a supportive school, who have been willing to think outside the box with me! They listen to what we think might work, and have tried to accommodate Lucie’s needs as an individual. They have worked closely with us to form a plan for her future, allowing her to study her GCSEs differently to their other students. Her year 9 has seen her attend year 10 and 11 lessons to study for her Geography GCSE in one year, under the guidance and care of an amazing teacher, whilst having tuition for the core subjects. Next year she’s hoping to take another 2 GCSEs and then a final 3 in year 11.
Being Lucie’s mum feels like being her P.A. I often say it is like a full time job, trying to keep on top of everything to do with school, whilst also balancing her physical and health needs. Being ill for such a long time, and missing out on so much, has understandably impacted on her mental health. She was only 10 when she became ill. She’s now a teenager. If i’m honest, the impact this illness has had on her mental health is what gives me the sleepless nights now. That’s not to say that I still don’t have the odd day where I’m overwhelmed by the sadness of her situation. I do. But I allow myself those days, knowing why they come and knowing they don’t last. Usually I tell Claire, and she cheers me up…more often than not with a plan for us to run away…like Thelma and Louise!!
I would say that one of the few positives has been the friends I’ve made along the way. People who I wouldn’t have met had Lucie not got ill, many of whom have also had their lives touched by M.E. and so understand where we are. I’m grateful for their support, as well as those friends who have just always been there for me. The ones who always ask how things are, who notice when I go quiet, no matter how long this has gone on for. This would be much harder without them with us.
I find the word ‘carer’ a strange one. To me it has such soft connotations…of loving and nurturing (which of course I do too). But it never feels strong enough for what the reality of life with a child with M.E. is actually like. You have to fight, be strong, never take no for an answer…and even on those days when you think the fight has left you, you have to dig deeper than ever before…and fight some more!
Perhaps I’ve accepted M.E. as being a part of our lives, and despite still hoping with all my heart that it goes away eventually, I’m not depending on it. We are where we are. And we’ve got this…
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 (10-16 June), 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.