I am writing for my daughter Clodagh, who is nearly 14 years old.
Clodagh was diagnosed in July 2020. Myself and my husband are Clodagh’s prime carers, for something that we did not know anything about. We have learnt so much in the last 3 years in what it can do to Clodagh and affect her. Not once has she complained about it. She is unbelievable and just gets on with it even when things can get very bad.
I did write a piece last year about Clodagh. She suffers blackouts, memory loss, sleep walking and just falling asleep for few mins at time at any place .But the day after the May Bank Holiday last year things took a bad turn for Clodagh. She woke one morning and her balance was completely gone and couldn’t get out of bed for a week. Gradually, with the help of physio, etc, she was back walking with a crutch.
With months of physio and her persistence she woke one morning in February she walked into my bedroom saying “mammy mammy look my balance is back, I don’t need a crutch”. To see her face light up there are no words, but unfortunately blackouts have crept back in, although not as bad before, and the chronic fatigue is bad. She missed a lot of school but her secondary school are so good, especially her year head and the school secretary, with how they look after her .Clodagh is so good and keeps up her work, even when she’s not there.
She definitely does not let her FND define her. Clodagh has amazing friends that watch and care for her. We have found every day over the last year can change so fast with symptoms, but I have learnt to enjoy the good ones, and thinking of the positives helps to get though the bad ones.
I hope this helps some else x
Written by Caroline, Athlone Co.Westmeath