Fatigue Workshop Day 2
Posted in fatigue, workshop on Thursday, September 24, 2009 by Emms
All six of us returned to our little room in the rehab building. Not quite as chipper as we were the first day, but all very thankful to be able to participate.
So what did we talk about?
A big question to those of with MS is what causes Primary Fatigue in MS? Primary fatigue is the fatigue caused by the disease itself, compared to secondary fatigue, which has many causes, including medications and mobility impairment.
Fatigue does not correlate with a relapse. Fatigue just is.
There are at least three theories as to why IT is.
1) Is it because of the broken and damaged nerve pathways in the brain? The brain must use a larger area (detours) to get the messages out...and if not taking a detour, the brain works harder...and harder to get the messages through. Multiple and stronger messages use up more energy than just one message.
2) Glucose is used in many parts of our brain as fuel, and if an MS brain has trouble using glucose, it is harder for the brain to be used effectively
3) The immune system is over active - ever present immune activity can cause fatigue.
That is 3 nutshells to digest.
And once again, we have been given homework! Interesting, homework.
I had to make the comment about participants in a FATIGUE workshop getting homework...complaining that they can barely make it through the day, and have had to give up so many things in their lives...
Our homework is to select 2 days, within the next week, and schedule the whole day - in particular the things that we MUST do, and at least three rest periods. We also have to grade our fatigue level in the evening, for the next seven days.
Rest can be something relaxing, it doesn't need to be sleep. But if we experience mental fatigue (oh yes!) then we have to be careful not to "rest" by doing word or number puzzles. I expressed that I have many hobbies, but I can never seem to turn my brain OFF. Even if I am beading, I am thinking ahead to what I'm going to make next, or that I should be sweeping the floor...
Apparently, I have yet to learn how to give myself permission to rest.
And...I have been told this before.
Emily
So what did we talk about?
A big question to those of with MS is what causes Primary Fatigue in MS? Primary fatigue is the fatigue caused by the disease itself, compared to secondary fatigue, which has many causes, including medications and mobility impairment.
Fatigue does not correlate with a relapse. Fatigue just is.
There are at least three theories as to why IT is.
1) Is it because of the broken and damaged nerve pathways in the brain? The brain must use a larger area (detours) to get the messages out...and if not taking a detour, the brain works harder...and harder to get the messages through. Multiple and stronger messages use up more energy than just one message.
2) Glucose is used in many parts of our brain as fuel, and if an MS brain has trouble using glucose, it is harder for the brain to be used effectively
3) The immune system is over active - ever present immune activity can cause fatigue.
That is 3 nutshells to digest.
And once again, we have been given homework! Interesting, homework.
I had to make the comment about participants in a FATIGUE workshop getting homework...complaining that they can barely make it through the day, and have had to give up so many things in their lives...
Our homework is to select 2 days, within the next week, and schedule the whole day - in particular the things that we MUST do, and at least three rest periods. We also have to grade our fatigue level in the evening, for the next seven days.
Rest can be something relaxing, it doesn't need to be sleep. But if we experience mental fatigue (oh yes!) then we have to be careful not to "rest" by doing word or number puzzles. I expressed that I have many hobbies, but I can never seem to turn my brain OFF. Even if I am beading, I am thinking ahead to what I'm going to make next, or that I should be sweeping the floor...
Apparently, I have yet to learn how to give myself permission to rest.
And...I have been told this before.
Emily
Day 1 Fatigue Workshop
Posted in fatigue on Wednesday, September 16, 2009 by Emms
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
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
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