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Fatigue Workshop Day 2

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.


Day 1 Fatigue Workshop

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 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!



Sometimes my brain is my own worst enemy.

And in other news, I'm working on selecting products and scents for Em's Slackers fall/winter fundraising campaign!

Think warm and homey - votive candles flickering - spiced plums and warm vanilla sugar.


what is going on?!

Today, I have an overabundance of energy.

Ok, I'm exaggerating. But I do feel pretty good - no real brain fog, and I seem to have some energy. I have been puttering around the house - doing the odds and ends tasks that seem to pile up.

The thing is - I have a headache. I have had a tight and somewhat throbbing headache for a week now, and nothing will get rid of it. I am also experiencing mild wobbles (but I puttered anyway!). The wobbles started one day last week, as I was sweeping the floor. And then last night, and this morning, they were back.

But I have some energy - so I am using it!

And now - I'm going to prepare dinner.

Gotta bounce!


*I just completed the sweeping that I was unable to finish last week. The broom was still waiting for me.

an analogy for you

It is difficult to explain to someone, what it's like to live with a chronic illness in which fatigue is a major player.

Every day, I try to act responsibly and efficiently - not wanting to waste an ounce of energy. It's like not opening the fridge door until you know what you want from it. I think back to my days as a food server: a good "waitress" never has empty hands. Same idea.

For those of you familiar with the chronic illness blogosphere, you have probably read and/or heard of "The Spoon Theory". So you could read it again, or skip along...I wouldn't want you to use a spoon on something that you already know. For everyone not familiar with "The Spoon Theory", PLEASE follow the link, and read the story...the whole analogy of what it is like to live with a chronic disease.

The Spoon Theory

*this is written from the perspective of a person living with Lupus, but you can say the exact same thing for MS*


a thank you

I just want to say - you are all great!

With thoughtful and honest feedback, you bring smiles and tears to my eyes.

I'm not one for commenting within the comment section of my blog. But I want you to know that I read all of my comments with great care and attentiveness. I often read a comment a few times before I publish it, just to let it sink in.

Thank you for spending time with me.


says who?

Jumbling thoughts in my head. I laid down for a nap this afternoon, and the words for this blog post jigged around my head. Instead of sleeping, or getting up to type, I played around on Facebook. Now as I sit here ready to type the post, I can't find the words.

Let's see...

Does a person with a chronic disease make any less or more of a parent? Why should having MS deter someone from being a parent? Do children of people living with a chronic disease suffer for a lack of physical involvement or even love?

These are questions that I ask myself.

This is how I answer those questions...

At some point in their life, doesn't every child (when not seeing their parent as a Super Hero),wish their mom or dad looked different, or did something different?

There is more to life than swings, skipping ropes, bicycles, and swimming pools.

Listening is important.

Perspective is important.

Patience is important.

Having MS makes life different for Jason and I. We aren't your average couple. Adjustments have to be made. Our eyes need to be wide open. Our ways and days need to be flexible.

In my brain, earlier today, this post was much more eloquent, thorough, and thought provoking. But it is the best that I can do right now.

Little bits about my life with MS

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