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Having a discouraging Day 
Créé par homemaker
07 févr. 2021, 22 h 00

I have Spinocerebellar Ataxia.  My mobility is getting more and more impaired and I'm finding it more and more difficult  to navigate simple daily routine,  I use a walker and I'm losing confidence in the stability and dependability of it.
 
Réponse de NatR
08 févr. 2021, 16 h 52

Dear homemaker,

I read your note on the message board and looked up the definition of your illness.  
it helps to have some idea what it is you are discussing - otherwise my comments won't be much help at all.  At least that's how I think 🤔 😀 

i am very sorry that you are struggling with your mobility and your strength to navigate your home.  I'm sure you are comfortable in your own surroundings ..

do you have any visiting support staff? It sounds to me like you might need a bit more support in order to manage well at home?

if you are losing confidence then I worry that you are fearing that you won't have enough strength? Do you have family or friends who check on you occasionally?  I do hope that if you don't have support - that you will be able to check on whatever might be good for you - helpful for you 

let us know how you are making out - and I do hope you can keep your independence for as long as possible 

sending you a hug from my corner to your corner ;)
best wishes
NatR  
 
08 févr. 2021, 20 h 58


Dear Homemaker,
Another member Carlyn is having trouble logging in so she asked me to post this for her:


Currently, I live with a diagnosed rare disorder which is very disabling. I don't want to name it because I like my anonymity here and I'm known in my illness field ;-)  In advanced forms of my illness, it will progress to rare types of cancer involving blood or bone. So that's what I live with now. For the past 9 years, my doctor has been gently trying to see if we can make things better. We have tried everything and my suffering of symptoms is worse now ... I think my body is shutting down interminably slowly. I’ve lived with my illness, since diagnosis - which took years - without being able to work, for 20 years. 


My father died of this and I know where it’s going and how it will likely end for me. I’ve tried hard but I am very tired of the symptoms and pain and severely restricted living. So I am choosing MAiD now.  


I hope you have a caring doctor. Mine is a rare GP who works with mental health focus in the hospital too. I wouldn’t have made it all these years without my doctor ... he’s very skilled, patient, careful and wise. 


My heart goes out to you. All I can say is speak with your doctor about how you’re feeling, not just physically, but emotionally. 


 Carlyn   


 


 




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