Workshop Week 4

The past two weeks of "class" have been focused on posture, proper sitting, standing, lifting, working...and sandwich making...to use the least possible amount of energy. Good body mechanics, and using your body efficiently can help to bank energy.

Efficiency means using larger and stronger muscles when you can; avoid strain because healing a strain takes up extra energy; when sitting or resting, be in a position that is restful (slightly reclined (but not slouched), legs supported, and support for all body parts).

For me, I feel as if I already have this knowledge - but a refresher, as well as other ideas of how to accommodate these practices in to real life is helpful.

What has stood out to me:

There is an important artery behind the knee, where if compressed while sitting, can slow blood flow (which is low energy).

What this means for me:

I need a stool for my feet while I'm sitting at the kitchen table.

Another thing that has stood out to me:

Try to keep your body compact. Whether you are sitting, eating, making dinner, reaching, bending, keep your back straight, and try to keep your elbows close to your body. Commonly used items should be kept at a height that is in between your shoulders and your elbows.

What this means for me:

My Mini-Wheats cereal is up too high.

The only good thing about my pantry is that Andrea once made up some baskets for little things in the pantry, and labeled them for easy access.

Emily

Workshop Week 3

This past Wednesday was week 3 of my MS fatigue workshop. We are halfway done, and I'm wondering what I have learned. One thing that I have learned, as I have already mentioned, is that I'm not alone, and I'm not crazy! Maybe that is enough right there.

I'll continue to think about this.

But let me tell you a story first (as I shared with my workshop)

Last week-end Jason and I packed up our car, and left on a 4 day getaway to Northern Ontario. We had the following for luggage: 2 pillows, one suitcase, one travel fridge (which plugs in to an outlet in the car), my laptop, and an "everything-but-the-kitchen-sink bag". We were set to stay in a hotel twice, and when we do that, we bring everything inside except for the pillows.

On our last morning out to the car, from the hotel, I had the keys to unlock the car, and pop the trunk hatch. I was rolling along with the suitcase, my laptop, and my purse. I stopped at the back door, and opened it for Jason so that he could put the fridge in, and hook it up. I made my way around to the trunk, and prepared to lift the suitcase in.

*along comes Jason, making a move towards the suitcase, to lift it in to the trunk.

*Emily walks to the side of the car, assuming she could sit in her seat

The fridge is not hooked up. It's sitting on the seat, not yet pushed to the center.

This frustrated me. I thought that we were being efficient...working as a team. I didn't think that we needed words - I assumed that Jason would do the fridge business, and I would load the trunk.

Jason had other thoughts - saving me spoons.

End of Story.

My workshop group thinks that I am crazy. I should be appreciative of having someone who will do all of the work. For the single women in the group, they only have themselves, and that can be physically tiring (please note, this is not my observation or commentary...this is what they mentioned).

For me, when I'm able to do something, I want to do it. There will be enough times when I am unable to do things, and will need and welcome help.

Does physical work/exertion deplete spoon count? Yes, it can. But at that time, I was choosing to spend that spoon.

Does having me run out of spoons (or run low) place more stress on Jason? Yes, it can.

So I have to think of my spoon supply on a daily basis...and be fair to myself and Jason. And maybe just do less work.

Emily

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.

Emily