“Recently my 9 year old daughter and I were talking about the lack of available information to help children understand what it's like when their parent has M.E and other illnesses.
“She took herself off to bed early and came to me the next morning with the following story. I thought I had always put a brave face on things and had hidden how ill I was from my children, but it turns out I hadn't.
“Holly has very little self-confidence and she doesn't believe me when I tell her how amazing she is. She would like to help others in the same or similar position and I hope sharing her story will help.
“Thank you.
Chantalle Peretti
My Mummy and M.E. by Holly Peretti
Before Mummy was ill, I remember her coming out everywhere we went. She did what normal mums who do not have anything wrong with them would do if they were out of lockdown.
She looked happy every minute of every day and always had a huge smile on her face. Mummy always looked strong, barely ever weak, or tired and she was always laughing, joking, and played in the garden with us for as long as we would like her to.
She made me feel very cheerful and welcomed to the family which I loved. Mummy took us to cinemas, playcentres, parks and even other people’s birthday parties. I remember Mummy was very rarely unhappy or upset and she only cried on really, really bad days.
I was always entertained as mummy played with us almost all of the day. That was until something changed…
One morning, we woke up expecting to see Mummy already dressed and waiting for us downstairs, but her bedroom door was closed so we knew she was still in there whether she was asleep or awake watching TV in bed.
Me and Charlie peeked in to see mummy laying there looking weak and tired. Quickly, we rushed over to Mummy and held one hand each, so she felt comforted. She definitely was not in her usual mood. Something was wrong.
We told Daddy as soon as he got home from his night shift as a paramedic. As soon as we finished telling him everything, he quickly helped me get Mummy dressed while Chaz went downstairs and got Mummy’s handbag, coat, and shoes ready, so she did not have to bend down and wear herself out doing those chores.
We rushed Mummy to the hospital, Daddy driving, while me and Charlie sat in the back, keeping an eye on Mummy to make sure she was OK. She already had an appointment, so as soon as we got in we went with the nurse to the room and told the nurse everything that had happened that morning.
The nurses went off and discussed what had happened. They then came back and told us Mummy had M.E. We were all heartbroken.
Since Mummy has been ill
Mummy got more and more ill and got diagnosed with more and more illnesses. She even faints now.
We are used to it but still anytime Mummy faints I still get scared she will not wake up again. We get anxious and Mummy has been fainting for a long time now!
As Mummy got sicker, she could do less and less with us and now it is very rare that Mummy can come out with us because she is too tired and weak. Our lives have been turned around completely.
We used to go to bed feeling very cheerful as we had had a great day out with Mummy and Daddy. Then you wake up in the morning, feel that something is wrong, go to check on Mummy and feel sad for quite a long time. You can imagine how that feels. It is horrible!
I hate seeing Mummy in all the pain, agony, and sheer exhaustion she goes through all of the time. I love Mummy all of the time no matter what she looks like or feels like, but I wish she were better so we could do the things we used to do that we can’t do now as she’s too ill.
What I see and what it means
On some good days, when she has had a lot of rest over the few days before it, Mummy looks a lot brighter and that means a lot to the family as she barely ever had days where she feels more cheerful and less exhausted.
When these good days do come round, we all feel a lot happier, including Mummy, and it means we can do some extra bits with her.
Throughout the day, we do a few bits with Mummy and then because that makes her exhausted, we go out somewhere or watch something upstairs, just the three of us, while Mummy has a long rest.
Resting does her good and means we can do some extra bits with her the following day.
We then have cuddle time with her – cuddle time in our house is what we call, ‘calm down time!’ That time is anytime after tea and before bedtime.
It is where we all snuggle and cuddle up together on the sofa and watch something we all like. I always like cuddling up to Mummy as then I feel that I am safe and that she is too.
Mummy now always looks weak and tired and on those days we know how ill she is. She can barely get up and we all have to help her go anywhere she needs to, or she will have a fall.
How it makes me feel
To see Mummy act and look so poorly makes me really heartbroken and upset as she looks so ill and in pain, that I just want to help her to magically get better, but I can’t because I don’t know what to do. I sometimes feel angry at myself for not just being able to make her better quickly.
Every time I make a wish, I always wish the exact same thing – that Mummy will get all better and back to her normal, cheerful mood instead of being tired, weak, and in pain every part of every day. I wish she had more energy so she can have more fun with us.
How I cope
I don’t actually mind not going to all these places as much as little kids would do, like Charlie. I would prefer to though. I understand that what can not be done, can not be done.
With little kids, they probably will not understand when Mummy’s ill, why Mummy’s ill and how to deal with it. Like if Mummy feinted for instance, they would be jumping on her lap and tickling her. On the other hand, as we are older we will know what to do. We would take Mummy’s blood pressure, hold her hand and cuddle her.
No matter what Mummy looks or feels like, it doesn’t mean she is the odd one out. The most challenging bit of looking after her is seeing her in so much agony. It makes me feel bad.
How I see the future
I am not sure if Mummy is going to get better or not in the future. I figured that if we carry on helping her, she will get a little bit better. I do not think her M.E. is going to get completely better, but if Charlie, Daddy, and I carry on caring for her as much as we can, then I think some of her illnesses may get slightly better. No matter what happens, I still love her!
Family Care and Support
If you are someone M.E. and receive care and support from family members, please join our conversation on ME Association Facebook.
To what extent do you rely on family? Could you manage without their support? If you have children, how have they been affected by your illness?
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279