Newbie from Bangor ni

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Hi there in the past year I've been told my son who is 5 has duchenne muscular dystrophy which is a life limiting muscle wasting illness. With life expectancy to mid 20s. I have had a tough year. The first 6 months I did not deal with this news well at. But the past 6 months I have given up work, become a full time carer for my son, moved into a bungalow so his mobility is easier. He is now only daily meds, and is doing well. But I'm exhausted. Even tho I have 5 hours a day to myself while he is at school I am just so tired all the time and it then affects my plans with him as I want to do as much as possible to make his life as full and exciting as I can. I've had blood tests and everything is normal. anyway apart from that I am adjusting to becoming a full time single mum/carer for my son.
Hi Hayley and welcome
I think the tiredness is your bodies way of telling you that the adrenalin that kicked at the shock of diagnosis has finally ebbed away. This is perfectly natural, none of us can run on adrenalin all the time..
I can well understand your desire to make his life full and exciting but he, and you, will also need quiet, close, relaxing times too. Such close times will be more and more important as time goes on, and will mean more emotionally than any trip to a theme park, for example.

Listen to your body, take some of that time while he is at school to rest, relax and recharge your batteries. Then take time to ensure your body is fit enough to meet his increasing physical needs. A well body will help you be mentally strong too. Consider too some form of talking support such as counselling. I think the DMD website has forums too. The final part of the mix is something to help you be calm
: meditiation, yoga or even a night out with friends. Even a caring mum is allowed a social life. A relaxed, balanced and fit you will be much better for your boy over the longer term.

He's lucky to have such a lovely mum

Hi Hayley,

Welcome to the forum.

Excellent explanation of why you feel exhausted and great advice from Mrs.A. I totally agree.

You are in this for the long haul, so looking after yourself is a number 1 priority. A rested, healthy, calm and restored Mum is paramount, so that you can cope. Contact a Family can help you get in touch with other DMD families, when you are ready for this.

Enjoy time playing, talking, reading and relaxing with your son as well as arranging exciting trips and experiences.