New Year's Day 1977

Emily, Dude, and Annie

Happy New Year!

P.S. - Nice hair, Annie :P

what is so important?

Even though it's expected - I don't like the fatigue that happens after a good stretch. That sounds strange, because I don't like any kind of fatigue. So to be more specific, I don't like that I have experienced what Jason and I call "a good run" of busy-ness, and now, I can't do a darn thing.

Once again regarding my fatigue, I hear myself complaining to Jason, "I don't like this". His response, "You say that every time."

Yes, I do.

Why?

Because it isn't getting any easier. This is not what I want.

Would it be easier if I adjusted my attitude...personality? Maybe then I wouldn't forget everything that I just accomplished.

What is so important in my life that I can't accept the fact that I just need to lay low...zone out on the couch or lay in bed for a couple of days?

What is that I want to do RIGHT NOW?

put away Christmas gifts, put the mandarin oranges in the fridge, clean up the clutter in the family room downstairs, organize my sock drawer, put away my summer clothes, organize my closet, read my new book, edit photos, organize photos on my computer, make jewelry, play on the Wii Fit, pluck my eyebrows, make a dinner that doesn't involve reheating leftovers, start some new crafts (knitting and sewing), organize the desk in the basement, write a blog post for emmsgems, make family calendars for February 2010, download CD's to the iPOD, put away months of magazines, request copies of my MRI's from the hospital...

...and that's just off the top of my head!

I want a consistent, level (no surges or rations), and happy energy.

But why "I don't like this", is more that just feeling too exhausted to do anything that I want to do. Experiencing full on fatigue scares me. I become more cautious when eating. I make more mistakes while communicating. The fog feels thicker. I feel useless and like I'm a disappointment.

And I feel like it won't end.

Emily

in honour of organization

I had a great day yesterday - and I'm still going!

Prepared for a brunch with five, some last minute additions made for a Christmas morning brunch of 8. The three additional bodies were (and remain) always welcome, but this was their first time at my house. We rarely see these people throughout the year, so there was a small amount of "we have to be at our best and have our home inviting" nagging in my head.

But I nipped that nagging in the bud. The only last minute thing I worried about was how to cook "good" scrambled eggs for 8 people. Everything else stayed the same, including the organization and delegation of duties.

On Christmas Eve, Jason and I made cookies and popcorn balls. We cleared the counters, and made a list of the jobs that would need to be done to cook brunch the following morning. The list was then broken down in to who would do what - with the assurance that it would be read aloud when guests arrived.

And - the best part - I labeled all of the dishes that items would be warmed it/served in.


Labeling, and thinking about it before hand, meant that I wouldn't be scrambling while cooking, bending, reaching, and spinning around - spending spoons, and inducing wobbles.

It worked!

I survived the day, with a short nap in between events.

And brunch was delicious .

Emily

Christmas

I'm searching for my humour and wit. I can't even squeeze out some sarcasm! I want to do a Christmas post - but I'm stuck.

I'm having trouble finding the Christmas spirit.

I enjoyed shopping for Christmas gifts...especially for our nieces and nephew. I was a Barbie girl - and so are R&R! I can't wait for Jason to open his gifts, and I would love to see R&R open theirs. I remember my "Best Barbie" Christmas, and I hope that someday they have "Best Christmas" memories.

One of my most memorable Christmas mornings: opening up the Barbie Camper!

I have messed up my kitchen while making some Christmas food staples:

Potato Bread is a family tradition - going back to Ladyfingers days as a girl. It is often reserved for Christmas and Easter breakfasts- and now, when the family comes together as a whole. It's a treat!














I've decorated the Christmas tree. We have new ornaments and new lights. I've carefully hung each ornament, admiring and remembering the story with each one. And even if there isn't a story, I have a fondness for each ball (or handmade dog face!) on the tree.










So why is it that I am without spirit?



Or am I? Maybe I am expecting too much and looking too hard.

Emily

Me, Ladyfingers and Annie - Christmas Day 1976

fitness my way

At the end of October, I canceled my membership to Curves. My personal relationship with Curves was not good for me. Too much pressure was placed on me...by none other than myself...to get fit by this particular means.

I started my Curves membership in the spring of 2006 - at the same time that I "went berry picking". I had two medical leaves placed on my membership during this time, and my attendance was sporadic at best. I just never felt "on" enough to go in for the 30 minute work-out.

I worried about being able to get myself home after 30 minutes. Sometimes, Jason would drop me off, and pick me up. To take the bus, would have meant a long walk, as the location is off the main routes. And on many occasions, I could not stick around for the full 30 minutes - my arms and legs felt like bricks.

I tried to adjust my workout. Instead of jogging or bouncing on the spot (in between the strength exercises) I tried to move slower. I would focus on moving my arms or my legs, or squatting while extending a leg. I had no shortage of movements. But I have a difficult time doing things at half speed or half movement...I feel self conscious. I push to my limit every time.

This goes back to needing to just slow life down. Things don't have to be rushed. I know that to maintain a non-wobbly world, I need to be methodical, cautious, and calm. I had trouble applying this to a work-out. And it became a fight with myself.

Guilt. Disappointment. Frustration. Fatigue. No more.

I am committing myself to staying healthy on my own terms...and I am considering taking an MS Aquafit class in the coming year.

Emily

best one liner of the month

A conversation that took place today, just before my morning nap:

Me to Jason: I brought up my i-pod from the charger.

Jason to me: Is it charged already?

Me: I think so. The green light was on the "bug" part of the plug.

Jason: You need to check the light on the i-pod.

Me...realizing my mistake and haste....

Me: Well I was just trying to be efficient.


Jason: Remember, when you are deficient, you aren't efficient.


*wow...did he ever hit the nail on the head with that one*

I was laughing hysterically at both his quick wit, and the truth to his statement.

Emily

it's getting closer

Please follow this link to hear about the latest Canadian connection to CCSVI:

CTV NEWS

I stumbled upon this clip via Facebook. I am proud that Canada is taking this seriously. Not only are Canadian doctors (and the Multiple Sclerosis Society of Canada)following the research and findings, but they are listening to the 75,000 Canadian people living with MS...and people around the world.

Proud. So proud. And excited!

Emily

Lunch With Sally

What a grand idea - getting together with the five other woman from the MS Fatigue Workshop. A lunch date to remind me that some people just get it.

Let me tell you about the ladies:

First, there is Sally* who can get lost just turning a corner, but has a twinkle in her eyes.

Then we have Julie* who loves to read but can never remember what she has read.

And...what is her name...let's call her Sally*...who is quiet and attentive, yet may fall asleep at the table.

Betty*, who has lots of wonderful stories, and can never remember if she has told you or not.

And Sally*, the team cheerleader.

We share our symptoms, searching for commonalities. One of us uses wheels to assist in walking, but I'm sure that we all think of wheels in our future. We talk about doctors, and findings in research. We aren't too embarrassed to say that we were looking forward to our afternoon get together yet our fatigue had taken away the excitement that day.

And if I don't remember their names, and repeatedly get them wrong, I'm sure that's okay.

Emily

*names have been changed

My CCSVI Thoughts

I haven't been up to much lately. A couple of weeks ago - at the breaking of the CCVSI (Chronic Cerebral Venous Insufficiency) news, I started a post all about it, and didn't finish it. I couldn't work my thoughts in to any sort of flowing and worthwhile words.

So now that the first flow of hype about it has settled, and you know what it is...I'll just share my feelings about it. I'm glad that I don't feel the need to explain it in depth.

I am cautiously optimistic about the treatment and findings. Obviously, I feel of a bit of the, 'Pick me, pick me" feeling that you get when teams are being selected. If someone would like to check my veins and if necessary inflate some balloons in them...go for it, if it means that I won't be so darn tired and foggy everyday.

That says everything about what I am thinking about CCSVI:

1. let's do it!
2. I don't care about cause or consequence and which came first...just give us relief, which it seems to do

I have had conversations with people about the new and exciting findings...and I have a number of questions, including these:

1. How does Vitamin D fit in to the picture?
2. If narrowed veins are related to the disease, why is it primarily a disease of the northern hemisphere?
3. Why can't we just have our veins checked and fixed, and worry about the "why" later?
4. I have low feritin (stores of iron)...is this related?

Emily