Do you remember in the spring, how my MS Walk Team sold fabulous lip balm, soap, and lotion, all handmade by a special friend of mine? From what we sold, we donated approximately $500 to MS.

Well - I'm doing it again, just in time for Christmas!

This time, to make ordering easier, all you need to do is visit my Etsy shop. The goodies are laid out there for you to make your selections. Soap, candles, lip balm, whipped soap, and buttercream lotion - in rich scents, including some special ones for the holidays!

You can purchase individual items, and there are some package deals as well. These items make great stocking stuffers, Secret Santa gifts, super special gifts for super special people...or just something for yourself.


MS Fatigue Workshop - Complete

Whew - I committed to something for six weeks - early Wednesday mornings, and I did it. Some days, I did not want to be there: I was just too tired. Other days, I slept for the rest of the day...and even the day after.

I'm not sure that I learned anything NEW, but it was a good refresher of some common sense things.

I know to preserve my steps. I know that not for fatigue, but for the wobbles.

I know that there is such a thing called Secondary Fatigue: fatigue brought on by medications, stress, physiological conditions and a few other things. I'm not on any new medications, and I try to limit my stress.

I know to keep my body compact when working/moving. But, I still need to move my Mini Wheats down from the top shelf, and if I ever have to make the bed, I will raise my knee up and rest it on the bed.

Schedules can be good things. Schedules help to give you a sense of purpose, as well as allow you opportunities to rest. When making a schedule, plan your rest FIRST. Jason and I need to make a house cleaning schedule.

Fatigue is unpredictable - we all expressed to our Occupational Therapist that no matter how good it sounds to "BANK" energy, there isn't always a guarantee that it will be available when you call upon it. That being said, to plan a day of go-go-go is silly...schedule rests. The gist of it is to not over-do it. And...don't wait to rest. If you are slipping, put your work/play/conversation away, and rest.

Communication is important, including communicating to those close to you what your fatigue is like. Choose your time to share carefully: be in a good place yourself, and make sure that your audience is interested and also in a good place. Communicating helps you and your friends/family/co-workers to be comfortable and supportive. And in the end, not everyone will understand.

The goal of the workshop was to give us strategies. I think it was a success. Can't wait for the cognition workshop!


body twitches

Since the beginning of my new reality, I have had random body twitches. Finally, they are reaching a frequency that I find concerning. All I can think about, is that I need to get back on my DMD (Rebif)...maybe it will make a difference. Did stopping my Rebif allow this to happen sooner rather than later? If I stayed on the Rebif, would it have not happened at all?

At first, the twitches were few and far between, not even a weekly occurrence. We joked that they were my "tell" in a poker game. I mostly had a shoulder twitch when I was stressed. Now, the twitches encompass more of my body, and I think, are more noticeable. They sure are to me!

I can be lying in bed, trying to fall asleep, and my leg jumps. Nike the cat, doesn't like this so much, as it disturbs her blankets. I can be talking with Jason, and my shoulder-upper chest-head area will jerk. It isn't a tremor - it's an all out movement: out of position and back again. The freakiest time is when it is my entire body - lying in bed, and I do the worm...or a body wave.

I don't know if there is anything I can do about it. When I first started with Dr E., my MS specific neurologist, I asked him if the twitches were caused by the MS . His response was non-committal. This was my way of telling him about the issue: I had already addressed it with my first neurologist, who wasn't in to treating symptoms, but rather seeing what symptoms would arise. My GP is supposed to be my primary care provider, even for MS, BUT, as he as told me before, he doesn't know enough about the disease. So, I'll wait another year, and take it up with Dr.E when I see him next.


Fatigue Workshop Week 5 and Other Stuff

Our workshop is starting to become repetitive. Instead of planning a day, we are planning a week for ourselves. The idea is to "bank" energy. Banking, to me, means leaving it tucked away for use in the future.

But, I have quickly learned in my short time with MS, this isn't always possible. It doesn't work that way: if fatigue is going to get you, it will. Don't get me wrong, the workshop has been beneficial in that I have met women like myself, and it has provided us with some strategies for doing tasks to use the least amount of energy. But if I could see "the wall" (fatigue) coming, I would get out of the me.
If energy could be "banked" then fatigue would hardly be the issue that it is.

The workshop has also reminded us to not fill our time with "have to's": it is important to have some "would like to's" in our day/week. A lack of "would like to's" is depressing.

Other stuff...

In our workshop yesterday, we talked a bit about things that we have given up, or stopped doing because of our fatigue. It felt good to hear someone with the same "give up" as me. Sad, but nice to know that I'm not alone.

Over the past three years, it has been common place for me to leave my house without going to great lengths to "perk-up" my appearance. I've never been one for much make-up, but now I wear none, if any at all. I prefer my hair straight, but now a fuzzy ponytail is about all I can muster.

And for the most part, I'm okay with it.
By the time I am out of the shower, I have used my arms enough. And to spend time in front of a mirror before tackling the great outdoors, that is a waste of energy.

What's the point of having sparkly eyelids and pink lips if you are slouched, watery eyed, and dragging your feet?


Workshop Week 4

The past two weeks of "class" have been focused on posture, proper sitting, standing, lifting, working...and sandwich 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.


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.

Little bits about my life with MS

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