Hello from Perth WA
My name is Helen Donovan and I am a full time Carer for my son who has severe ME/CFS
He has been ill for over twenty years but has been totally bedridden for five years
He is unable to talk, walk , cannot stand light or touch
It has been a journey that I wouldn’t wish on anybody
I have a small supportive family and I also have Carers who come in twice a week for 4 hours to look after my son
I look forward to this forum and the support it may bring
Kind regards all
@shetland Hello Helen, I am very pleased to meet you. Your son's severity has moved me considerably and I'm so glad you have found your way here. Sharing my journey amongst others who care wholeheartedly, has been a relief and blessing. I'm sure you will find an abundance of support and understanding.
Thanks for your post
Are you a Carer or patient?
Hi @shetland I am a patient with a carer.
Nice to meet you
@shetland Hi Helen, thanks for the welcome. Long term ME/CFS is definitely a haul. I have been living with this for a very long time and understand the extent of symptoms, having temporarily lost my speech and ability to walk several times over the past 3 years. I was only diagnosed 10 years or so ago but have been living with it for the past 30. I regained speech and mobility within a couple of days each time, but I am a falls risk due to vertigo and dizziness. I consider myself extremely blessed, that I recovered from this extremity within a short time. With understanding the illness and learning to manage it better, I feel I am better positioned to hopefully not have that again. May I ask if your sons' loss of speech and inability to walk were caused by the illness?
Hi, Helen. Please to meet you.