suessewbyme

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

Hi there,

This prompt took a bit of soul searching. I struggle with feeling positive all the time, my life is incredibly challenging and stressful and it will only get worse, but the one positive emotion I do feel is love.

Love for my family who help me every day with all the many tasks that are difficult, and for those in my family who reach out when they have the time. My friends who make time to see me or contact me .

Those who help me when I need it . Having a terminal illness (ALS) a form of MND makes it hard to be positive. I am positive there is no cure and positive I can’t improve so it’s hard to feel good about any of that .

There are no positive affirmations in my life just the reality of every day . Death by a thousand cuts.

I love those in my life who care enough to reach out,it’s only when you find yourself in a situation where you can’t help yourself a lot of the time that it reinforces who in my life actually care. This illness is isolating .I had to give up my license so I don’t get out all that much I am limited to taking myself on the scooter if I need to go out. Obviously I am limited by distance but local trips are fine.

I love taking myself out it’s slow but the freedom is worth it. I need help getting back into the house and also charging the battery of the scooter so not completely independent just the illusion of it for a little while.

I am writing this sitting at my sewing machine my hands have fatigued so I need to wait and see if I can continue.

There are no future plans now just everyday to deal with.

I loved my life before.

Sue 🙏