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.
So sorry I haven’t replied to your question
I’ve had some family issues to deal with
My son lost the use of his voice one year after he became very severe
He has had ME/CFS for about 25 years but coped as best he could with family support
He hasn’t uttered a word in 4 years
I can’t tell you what it’s like not to hear his voice , we have now developed our own sign language ,that is how we communicate
It happened over a very short period , seems to affect only the very severe
How are you coping , do you have some support ?
@shetland Oh Helen, the severity and extremes of this illness is heart-breaking. The loss of speech and mobility, on top of all the other symptoms, is just how sinister and chronic ME can be. Please let your son know, that there is a whole community of people who understand and can relate to living with this. Becoming dependent on family members for daily care and support is quite often the untold part of the journey. I am very grateful, fortunate and blessed to have my husband as my carer. When I became severe and unable to talk or walk, it threw our whole lives into chaos. We had to re-plan our life and future. The upheaval, re-arrangements and flipping our whole life around, whilst living with the illness, was the most daunting, exhausting and emotional time. Where do you start trying to make a life with this 'Thing'? There are so many other parts to living with ME that affect the patient and carer. I hope we can talk more on this. I can imagine your journey to be just as chaotic and having just as many hurdles and challenges. From my family to yours, we hear you.
Would love to stay in touch
You are right in describing this terrible illness
I am happy to hear you have a supportive husband , all too often you hear about people being abandoned! I have a small but supportive family and also have friends that I keep in contact with
I have a Carers who come in twice a week for 4 hours so my husband and I can have a break.
I also use that time to do things for my mum who is 92 !
Live seems to change so dramatically sometimes but I guess we are fortunate to live in Australia
Take care , will be thinking of you