Today was the first day that I have been in a room with other people living with MS. I realized last night, while preparing for bed, that I had a few butterflies in my stomach, because it would be my first time in such a situation.
And let me say this...it was really good. There are six of us participating in the MS Fatigue workshop. We all hit it off...already talking about meeting for coffee in a different environment.
Verification. Affirmation. Whew.
Of course, while sitting in the one hour and thirty minute session, I made mental notes of things to say here tonight. I'm now having trouble with retrieval.
*This workshop is not a fly by night gathering. I have a participant manual (different from the leaders manual) assembled by/based on a research study conducted by the Department of Occupational Therapy at the University of Illinois-Chicago, and funded by the National Institute of Disability and Rehabilitation Research. The aim of the program is to reduce the impact of fatigue on my life, thus increasing my overall quality of life.
87-90% of people living with MS report experiencing fatigue. Fatigue is also the leading cause of people with MS leaving the workforce.
Our first task (besides moaning about parking options) was to make a list of things that we wish we could do better/or do, but can't/don't because of fatigue. This involved anything from self-care, to community involvement, to leisure activities. We were then encouraged to select 5 of the most important activities, and share at least one of them with everyone.
Sharing encouraged ideas, strategies, and even commiserating. Not only are we in this course to learn from the Occupational Therapist, but we are there to learn from each other.
My list went like this (in no particular order):
*play games with Jason (Scrabble, Cribbage etc)
*go to Curves
*dust & sweep more often
*cook a multi-step dinner
*drive without fear
A couple other examples given were to "work", and "read a book".
More to come!
Emily
Subscribe to:
Post Comments (Atom)
2 comments:
I think you should nix the dust and sweep more often. this is coming from a control freak. save the energy for more important things in your life...like playing games with Jason, emailing your traveling, homesick BFF & snuggling kittens! the rest can wait ;p
So great that you're doing this... Not only to learn more, but to meet other people who can validate that everything you're going thru is to be expected and in keeping with what they are dealing with too.
This is puny compared to your situation, but I had mono when I was in university... and one of my biggest battles (besides the sickness itself) was dealing with how concerned I was with what other people thought. I would be BAGGED, but because I wasn't coughing up a lung or tossing my cookies, I figured people must think I was just a wimp or faking it or being a drama queen...
I hope your workshop helps you figure out ways to minimize the fatigue, to deal with it when it's there, and to negociate expectations (from yourself and others).
And hopefully you figure out some parking secrets too ;)
Post a Comment