I remember what that was like I miss having energy to spare.

I feel energised when I spend time with friends and family but nothing gives me energy. I constantly weigh up possible movements and actions . Each days activity is completely determined by fatigue and weakness.

I exercise nearly every day, but that is to maintain muscle and mobility ,it fatigues and doesn’t give me energy. My life is like a disabled hamster in a broken wheel . Watching every step is normal but now my AFO on my right leg is failing , my foot scrapes the ground with every step so it is slightly problematic. 4 weeks until my appointment with the podiatrist. So it will be a slow month .

When I sew, I feel good but fatigue determines what I am able to do ,and how long I am able to work at it . Never as long as I want. I have to manage the fatigue so I can get up from the sewing machine and then make my way back to my recliner.

For the last 4 weeks I have had tradies working on my bathroom.My bathroom renovation is almost done but the vanity and mirror needs changing (they are not wheelchair accessible). So another 2 weeks in the hired bed.

I do feel energised when I am on my scooter on my way to catch up with friends or go to an appointment just the chance to leave my house is good but again someone needs to let me out opening the door and the gate locking them behind me and they need to be home for me to come back in .

I dream of creating but lack the physical strength to do what I want in the time I want. But I guess I should just be thankful I can still use my hands . The inevitable consequence of my ALS is something I am trying to not think about it’s too hard.

Dealing with each day ,treating it as the best I will be is all I am able to do . There is no future thinking I really just need to survive each day .

Take care 🙂

Sue