By Richard Peretti
Introduction
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 ME/CFS and asked what I thought.
We booked in with the GP and he referred her to the local specialist where it was diagnosed.
“M.E. is a stealthy thief; it creeps into your life and steals whatever it can. It has stolen a wife, a mummy, and a strong and independent woman.”
Richard Peretti
How I see M.E.
M.E. is a stealthy thief; it creeps into your life and steals whatever it can. It has stolen a wife, a mummy, and a strong and independent woman.
It has stolen 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.
“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.”
Family impact
There are so many things that people take for granted on a daily basis, things that M.E. 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 someone with multiple diagnoses.
Let’s face it, we all know that these illnesses attack in gangs, rarely alone.
What is a good day?
A good day for the kids is not seeing mummy in pain, not worrying that mummy won’t 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.
“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.”
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 relatively normal for the kids.
Its where she is ready to fall asleep through exhaustion just as we are leaving on the school run, where she has so little energy that 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.
Family life
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 minutes 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 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 lose my wife and scared to be a single dad.
“We need to stick together, support each other, 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.”
Acceptance
Accepting things is easy isn’t it? I’m more of an “It is what it is, let’s 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. But acceptance for Chantalle is very difficult.
Why can’t she just rest and relax when she needs to? Why does she always feel the need to do things when she can’t? Why can’t 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 just accept the illness.
But there’s a long list of reasons she finds it so hard to accept, and these are just a few of them:
First, it’s not just one illness, we are in double figures for diagnoses now, and a few of them are life changing on their own let alone in combination.
Second, 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 live.
Third, 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 about accepting something minor; it’s about accepting multiple life changing situations which often battle each other.
It’s about accepting that life will never recover to what it has been, it’s about a strong-willed woman who is reluctant to accept as she sees it as defeat.
What’s next?
Next is more hard work. We all have things we need to change, to accept, and adapt to, to help make our lives easier.
We need to stick together, support each other, 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 M.E. and are being as helpful as they can be with symptom management.
We need to continue to evolve to this new way of living.
The ME Association
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