People who don't understand

I was horrified the other day to be told by a neighbour who suffers with Parkinsons and keeps pushing herself so hard she falls asleep at the drop of a hat, that I was pampering my self by resting. My OT has advised that the fatigue I suffer needs care and attention, taking a break between each activity, but I suddenly realised that this woman knows nothing about Sensory ataxia. She was just voicing her disapproval at the way I am running my life. I feel that as I exercise, and then need a break, go shopping and come back and need a break is the way I have to run my life. Having only been recently diagnosed, but suffered from the symptoms for three years, I am dealing with life the best way I can with a marvellous husband who is a total support. I was advised by the neuro physio, OT and consultant to live each day to the best of my ability, and that is what I am doing. I do wish people who don't understand would at least take the time to Google Sensory Ataxia and maybe get some idea of how we can suffer. My greatest problem is nerve pains all over me, legs, arms. and I am taking Gabopentin to help, nothing so far but it's early days. Still "Live every day to the fullest" and ignore the fools who don't understand or can't be bothered to understand.

Yes, I agree with you! I was told to follow the two thirds rule in terms of time- two thirds of the day being active but taking one third of that day to rest. Like you my ataxia is sensory and I have regular rests across the day including a full hours 2-4 bed rest and then the second part of the day starts again. The cat loves it, and it suits me!
My rest was given to me ‘on prescription’ by the neurophysios at Sheffield.
Don’t feel pressured to do more than you can. You’ll have good days and not so good ones, and gradually you’ll discover what works best for you.

It is so nice to hear other people that are going through the same situation as me. I get so tired lately. I have to take rests after each thing I do (just like Lisa). My husband does not understand this disease at all. When I am tired, and need to rest, he just thinks I am lazy, and I don’t do anything all day but sit on my butt. He does not realize I do do things I can, I just need to take rests in between my activities. But, I try not to hear him when he tells me that I don’t do anything. If he only knew.