Overcome C Exercise Trigger?
Posted 31 December 2011 - 09:51 PM
Posted 07 January 2012 - 05:22 PM
Posted 07 January 2012 - 05:29 PM
I would be interested in hearing from people on this as well. I don't have severe cataplexy; my knees just buckle occasionally. I spend a lot of time under the bar though, which would be the worst place for that to happen. So yeah, this is definitely something I think about too.
Posted 07 January 2012 - 07:22 PM
Posted 08 January 2012 - 02:06 PM
Right now 4 flights of stairs or a full body stretch and I'm down. I gauge on a scale of 1(minor weakness) -10 (collapse). I now live a very sedentary lifestyle and I still spend most days at a 6. But I am trying to stay optimistic.
Anyone find ways to improve endurance? That's what I am hoping to achieve with the exercise physiologist.
Most depends on the activity, but also the others around and/or involved too, and is just day to day for me. Until more recently I'd not had the cataplexy beat me, although since it is severe I've lost. Have had to limit certain activities entirely, with the hopes I can still very occasionally manage or better yet return perhaps someday. Thought I'd be doing that certain activity till I was in my 40's or 50's, but at 31 it looks very unlikely. For whatever I do manage still which is basically a game or two of ice hockey a week; it seems to help a lot, if I can regularly keep my body loose and stretched, through daily very basic exercises/stretches/yoga... Also, planning days ahead for rest and proper food helps. Lifestyle...
Posted 12 January 2012 - 02:40 PM
That hockey game or two a week, is basically the only time I leave my home, besides for my daily walk to get coffee.
Which is a one, 16oz cup daily (which I don't even hardly drink half of on some days), and caffeine is the only stimulant I take - besides foods.
I have to spend hours preparing myself, days actually, for the games (which are just pick-up adult games, no practices and mostly without refs).
There are game days that I just am too clouded/fogged by the fatigue I experience to go play, or other days I'll have fallen asleep and realize I'm late to leave.
Before, when I could manage to skateboard, I'd just go skate when I could feel it, unfortunately hockey isn't that way or I'd play a handful of times a week (probably mostly real late at night).
I would say and/or add that, I've found no way to improve my endurance beyond a very minimal bit over what is a long hard period of time, with gradual yet hardly noticeable effect/s in the long term.
It seems more like if I don't maintain the bit that I still have, or each time I give up and don't push on, I lose more and more of what I had.
The irreversible feeling is heavy and painful, never give up though; regardless...
Posted 12 January 2012 - 03:44 PM
I totally hear you on the exertion trigger limiting not only physical activities but social ones -- certainly this is not the 'to be a hermit' I wished for in those hectic pre-diagnosed overwhelming moments
so, yes, let's keep trying and keeping our fingers crossed (but not too hard or we'll fall down)