A cure for ALS would be having it all for me .

I don’t have hope that I will be alive to see it . In the absence of that then for me it is managing to get through each day.

Trying to stay positive to be engaged and remain motivated to still live. Even with the absence of the life I had. The challenges are ever present some I work around others are let go because it’s too difficult.

Creativity depends on function and that depends on whatever has been done earlier. Fatigue is a constant and needs managing to get anywhere with what I want to do. My inability to climb stairs means all my life upstairs (my work room my winter clothes)is out of reach only available through someone else. That’s frustrating and depressing. Having to wait and then dealing with the inability of them to find what I need is another level of frustration. It really is death by a thousand cuts.

Waiting on NDIS approval for my bathroom remodel means it is not a safe place for me to be. It is a also slow and unsteady process that requires recovery time after.

A new challenge , ( finding myself on the floor as my knee collapsed) poses questions how to manage it. Discovering that I need help ( I can’t get up on my own ) and the fear of what that means is truly terrifying. Isolation is ever present and will only get worse. Alone in my fear and at home means I am scared of my limitations. What do I lose now ?

Lately I have been thinking about all my friends and family the people I care about , and how very little contact I have with them these days. When I was able to get out and about there was lots of opportunities for catching up. Now it’s better for me to get a call or for them to pop in but very few do either. It’s almost like to them I am just gone. My only company besides my husband and son, are all the healthcare professionals that get paid to work with me. It’s a pretty unsatisfying life.

I miss my friends, I last saw some of them one month ago, no calls or check ins. I feel like I am Just forgotten. I will see some in a few weeks but it will be close to 6 weeks between social contact with them.

Having it all would be getting my old life back and not living this bland colourless existence that will only get worse.

Having it all would be not losing the use of my hands , the inevitably of ALS . How much more time do I have before I lose my sense of self. What am I without my hands ?

Questions to ponder on this horrible journey.

Take care

Sue 😕