Hello and welcome to July’s newsletter. Hope you have had the best month possible.
This month’s 12 Smiles sent to both ME sufferers and carers of all ages were kindly sponsored by SSE England & Wales Unison branch. Thanks to their generous donation we were able to send blankets, socks, craft sets, pamper products, books, a water bottle, sweets and chocolates.
Smile of the month
Each month we ask on social media what has made you smile this month? We love hearing the responses and hope by sharing some of your smiles it can help others to find a smile too.
What’s made you smile this month?
Share a story is a segment in our monthly newsletters where we share a story from an ME sufferer or carer 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 email@example.com.
Last month as part of Carers Week Richard shared his story about caring for his wife Chantalle who sufferers from ME. Thank you Richard for sharing your experience of a family affected by ME…
ME and my family
In 2015 I decided to be very ‘modern’ and joined a dating app. Little did I know how much that would change my life. I met a wonderful lady who made me laugh and gave me butterflies. She had 2 lovely children who we used to take out every weekend to the zoo; a place we all loved. After only a few months together I knew she was ‘the one’. On one such trip to the zoo we took a picnic and I popped the question on the viewing balcony watching over the giraffes and rhinos. I waited until no one else was around, I was scared she would say no. Thankfully she made my day and agreed to be my wife. A year to the day that we met I married my wife, Chantalle. During this period there were a few trips to the doctors as Chantalle was suffering with increasing fatigue. Despite all available investigations and blood tests there was still no diagnosis, yet the symptoms carried on. Not being one to sit back, Chantalle invested a lot of time into researching possible causes for her symptoms. She had gone through a lot of tests and examinations already and then one day she showed me a website for CFS and asked what I thought. We booked in with the GP and he referred her to the local specialist where it was diagnosed.
How I see ME
ME is a stealthy thief, it creeps into your life and steals whatever it can. It has stollen a wife, a mummy and a strong and independent woman. It has stollen our lives and our freedom, our hope and our future. It has had us in tears, scared, confused and contemplating life. It’s a spiteful illness that not only ruins the life of its host but also the lives of those close to them.
Effects on us
There are so many things that people take for granted on a daily basis, things that ME sufferers long to do. Shopping, getting dressed, having fun, cooking and walking the dog to name but a few. We long to be able to have a day out together, to make memories for us and the kids. We would love to go on holiday and have the freedom to do what we want, not to search for somewhere that is suitable to take all the heat pads, electric blankets, box of medicines and all the other home comforts that are needed for multiple diagnosis. Lets face it, we all know that these illnesses attack in gangs, rarely alone.
The good days
What is a good day? A good day for the kids is not seeing mummy in pain, not worrying that mummy wont be there when they get home from school and being able to have mummy join in with something they are doing. A good day for Chantalle is surviving, not being in agony, being able to get to the bathroom to get washed and dressed without help and to have the energy to do something. A good day for me is simply seeing my beautiful wife smile, seeing her happy or enjoy something. A good day for me is rare.
So what is a bad day? A bad day is common, a bad day is normal, a bad day is what we are used to, a bad day is quite frankly rubbish. This is a day where Chantalle wakes up in pain, exhausted, knows she should stay in bed but just manages to get downstairs with help to keep things normal for the kids. It’s where she is ready to fall asleep through exhaustion as we are leaving on the school run, where she has so little energy even feeding herself is a struggle. Its where the kids realise something is wrong and don’t want to go to school, where our loyal dog doesn’t leave her side and drools with anxiety. Its where I can see the love of my life struggling so much that I get frustrated and struggle to keep my emotions inside.
I used to love to take my wife to the theatre and have some dinner, it was lovely to surprise her with a night out, to have some time together and keep the romance alive. Now the only alone time we can get is 30 min in bed, 2-3 times per week, before we fall asleep. I try to take the kids out every day when they are off school to have some fun and let off some steam. It gives Chantalle the chance to have some peace, but none of us like the fact the family is apart; thank goodness for mobile phones to be able to send pictures and videos to try and put a smile on her face.
How I cope
In all honesty, I don’t think we do. I work permanent night shifts as a Paramedic so that I am available in the day, I survive on 4 hours sleep between shifts and have to be alert enough to make life or death decisions. I regularly become frustrated that I have spent 16 years working in the medical field, trying to do the best for those I help, yet at home I feel helpless. I have to sit back and watch someone in pain, watch them struggle to survive. Often it can feel that I am more of a counsellor and a carer than a husband. Many a night I have left the house in tears and sobbed all the way to work, scared that I will loose my wife and scared to be a single dad.
Accepting things is easy isn’t it? I’m more of an ‘it is what it is, lets deal with it’ thinker. I can accept lots of things, life rarely seems to go our way so I’ve had to get used to it. Why can’t my wife just rest and relax when she needs to? Why does she always feel the need to do things when she can’t? Why cant she just chill with a box set? Why can’t she just accept that she is ill? Even I can see that the lack of acceptance is making things worse, surely it’s easy when you feel as ill as she does to know and accept the illness. Well, I suppose, theres a long list of reasons. Firstly it’s not just one illness, we are in double figures for diagnosis now, and a few of them are life changing on their own let alone in combination. Secondly why should she? She’s only young, has kids to watch grow up, a family she wants to look after and a life she wants to love, why would anyone want to accept that? Thirdly, she has been bereaved – she has lost a big part of herself, she is grieving, nobody can accept grief at least without time passing. This isn’t just accepting something minor, it’s accepting multiple life changing situations which often battle each other, it’s accepting that life will never recover to what it has been, it’s a strong willed woman accepting defeat.
Next is hard work. We all have things we need to change, accept and adapt to help make all our lives easier. We need to stick together and help each other out and learn how we can have fun and make memories together. We need to not compare ourselves to other families because we are all different, we are facing different difficulties and often what people portray on social media is not the truth of what is happening behind closed doors. We have found a really helpful GP surgery who don’t disbelieve ME and are being as helpful as they can be with symptom management. We need to learn our new way of living.
Chantalle’s daughter Holly also shared a story for us last month for Carers Week titled ‘My Mummy & M.E’ which you can read here.
A special thank you to SSE England & Wales Unison branch for sponsoring this month’s Smiles. We really appreciate your kindness and generosity in helping make a difference to those recipients. When you have ME and you are often confined to your bed or house and are unable to participate fully in life, receiving a parcel in the post can give a reason to smile and remind you that you are not alone. Thank you Jayne and SSE England & Wales Unison branch for helping make this possible.
A big thank you to everyone else who has supported us this month. All donations are gratefully received and together make a huge difference so we cannot thank individuals enough. Thank you to those who chose to support us on Facebook with their Birthday fundraisers, hope you had a lovely Birthday. Your kindness and generosity means such a lot and enables us to continuing sending Smiles to those affected by ME.
Smile For ME