Hi there,

My life is in a pattern I call “hurry up and wait.“

I have been putting off moving back into my room downstairs while the bathroom was renovated.

The renovation has finished just a few changes for accessibility need to be done , but 7 weeks after moving out I am still not back in .

There are a few reasons for this ; Firstly I am waiting for the NDIS to approve funding for a bed that will lift me up as my ability to pull myself up is getting weaker. I am also having trouble with my AFO so my right foot is not lifting up properly , stairs are a problem. My room is on a higher level (so I have been using a hire bed on the lower level) and I am waiting for NDIS approval for a wheelchair lift so I can get up and down between the levels. I am nervous about moving back up.

The new Bathroom will be much easier but all the stuff having to be moved up will be a major hassle. I don’t know if I can sleep in the bed or if I can get up if I need to use the bathroom in the middle of the night.

MND ( ALS) means that fatigue is a constant and management of this is crucial. I can’t overdo anything without major fatigue and then rest will be needed.

My ability to move back in is completely dependent on help. I can’t do it on my own. So I haven’t asked yet partly due to fear and anxiety, I also need assistance to get up the stairs to that level.

I will be more positive this week .I will try to move forward ,get back in to my room with the help of others , I know that it’s time.

Times up. Wish me luck.

Take care ,

Sue 🙂