Share a story – Holly

My Mummy and M.E

Before Mummy was ill:

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 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 into 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 in the 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 ever again. We still get anxious and mummy has been fainting for a long time now! As mummy got iller, 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 does 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 was 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 has 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 mummy. 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. It does her some good which means we can do some extra bits with her the next day. We then have cuddle time with her later, 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 painful that I just want to help her and she magically gets better but I can not because I don’t know what to do. I sometimes feel angry at myself for not just being able to make her better quickly. Everytime 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 painful every part of every day. I wish she had more energy so she can have more fun with us.

 

How I cope:
 
I do not 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 fainted 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!