BUT YOU LOOK OK

Yep. looking at me standing there, or ‘walking’ with my frame it all seems ok, What you can’t see is the effort, the concentration, the fatigue. You can’t see the frustrations I have every day, in the most simplest things, even typing this – how much effort, concentration then I see I’ve done it all in Capitals!, delete then redo it. How difficult it is being so strength – weak, my satisfaction at vac’ing the place, followed by the compulsorily 30 min rest due to the fatigue. Standing is a effort, all the inputs involved, balance, weight, strength, breathing, all the auto stuff. Walking with the frame requires heaps of concentration and energy. Would you ever think eating is tiring, how about watching TV, but I look ‘normal’, not sure what ‘normal’ looks like. Sitting outback tires me, talking is a whole different experience ! Asphyxia is quite irritating, and extremely tiring. Have to ‘think’ first, then mentally sound the words, then have a go pronouncing them and it’s slow, slurred, must be done in one breath, can’t breath and talk. frustrating ! Comprehension ! can I understand, I never know till I’m corrected, this is annoying. BUT, I look ok 🙂

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