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Advice from a lupin
Iris L.
Posted: Saturday, June 22, 2019 2:47 AM
Joined: 12/15/2011
Posts: 16574


A lupin is a person with systemic lupus.  Years ago, when I attended one lupus support group, we were told by our leader to expect to be able to do only ONE activity per day.  I have since tried to keep to this advice, although I do not always follow it.  But I can remind myself when I become so fatigued after doing more than one activity per day, WHY I am so fatigued.  I am still so fatigued one month after my trip.


I think this advice might help PWDs who become fatigued.  I think many PWDs overexert themselves with activity.  I don't think I'm the only one.


Iris


alz+
Posted: Saturday, June 22, 2019 7:05 PM
Joined: 9/12/2013
Posts: 3560


One thing a day seems smart to me, at least to have that be the goal. If I find I can do more I feel good about it, if I can't I can relax with "well I got the dog walked".

Living with Lupus is a challenge from the little I know, really glad you are able to still get out and about when you want.

Not being able to leave the house on my own was the biggest change for me, giving up driving. Kind of surprised I adjusted at all, not that there is much choice.

thanks for sharing that insight.


Iris L.
Posted: Thursday, June 27, 2019 1:07 AM
Joined: 12/15/2011
Posts: 16574


I'm so tired.  Today I took my car in for its six month service appointment.  I walked two blocks to the shopping center that I used to frequent about fifteen years ago.  I walked around, got a hot dog and an ice cream cone, and walked two blocks back to the car place.  That was my one activity for the day.  I can't believe how tired I am! 


Iris


Iris L.
Posted: Friday, June 28, 2019 12:31 AM
Joined: 12/15/2011
Posts: 16574


  Today was my last day of Computer Class.  I am happy for the summer break.  I have a big backlog of work to do.  It has taken me years to figure out how to compensate for my impaired executive functions.

Iris