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

take it as it comes

Spontaneity. It may just happen. The words given to a couple unable to conceive a baby using all means within their financial, emotional and physical power.

Spontaneity and just letting things happen is not how am I trying to live my life with MS.

So now what?

I'm feeling a bit useless and damaged. But don't worry - I got out of bed, I washed the dishes in the sink, and I'm writing this blog. I just need to reach a final point of acceptance...of something.

Wishing a baby to just happen while on Rebif is not recommended. So is it time to get back on the DMD track, accepting that being pregnant will never be in my cards? Or is it time to lay off all drugs, DMD and fertility and see what happens? Back to square one, just like five years ago, but this time I do have MS.

It was made clear to Jason and I yesterday that my insides are a "hostile environment". Recent medical oopses...oops, did I say that, I meant to say recent unfortunate medical events have resulted in extensive internal scaring. Not to mention endometriosis, have made motherhood the old fashioned way next to impossible.

I have to make a choice. Time is not on my side. Though I am not "old", any time waited is time past in reproductive years - decreasing the odds of successful "other methods" of conceiving. And as far as I am concerned, time is not on my side with MS either. At the drop of a hat, things can change or maybe just as time goes by...things can progress.

When I was waiting to start my DMD 3 1/2 years ago, I likened it to standing in the middle of a busy intersection, unprotected. For myself, I believe in the DMDs.

While I may have the inclination to take it as it comes for many things, I can't be this way with MS.

Emily

now and then

Now: when I tilt my head back to drain a can of pop...I can do it.

Then: I couldn't finish a can because if I tipped my head back, I got the wobbles.

This is just something on my mind these days.

Emily

the flu

Before now, I have never been afraid of catching the flu or a cold. I'm not going to tell you that I'm afraid of H1N1. People die every year from flu and flu complications...

I am concerned with the ease of transmission of this virus - because I don't want to get sick. I don't need anything else taking away my energy. My energy is precious. When I'm dragging, I feel useless.

Sure, we all feel that way. But I feel drained of energy everyday. I don't need the flu, or a bad cold making it worse.

Emily

Fundraising

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.

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Click here to take a peek and make a purchase!

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!

Emily

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.

Emily

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 way...trust 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?

Emily

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

an awesome find

Girl Power Print by mikiep

Look what I found on Etsy!

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

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 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

enemies

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.

Emily

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!

Emily

*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 story...an 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*

Emily

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.

Emily

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.

Emily

maybe tomorrow will be different

I woke up this morning, to discover that I still have MS.

Yesterday, I woke up many times throughout the day. To date, I would say that yesterday was my biggest battle with the fatigue monster. I would be up for less than an hour, and then back in bed for more than an hour. I felt useless, embarrassed, and frustrated.

I've been wondering, and thanks to a new contact, I have recently heard that interferons can help with fatigue. Interferons are those fab DMDs (disease modifying drugs). I've tried a couple of them, but currently, while deciding things for my future, I'm not on one.

When I had my annual check-in with my MS neuro earlier this month, even if he were to prescribe me something for my fatigue (which is now in the hands of my GP) he wouldn't anyway, knowing that I may likely be trying to grow my family. So while I struggle to stay on my feet, awake, alert and useful, I remind myself that there are things to help me (although not guaranteed), if I want.

I'm hoping that the fatigue workshop (a six week stretch) put on by the MS Occupational Therapist will be useful. I don't know too much about it, except that I'm a good candidate. Apparently, I'm not alone in feeling useless, guilty, confused and wondering if other people feel the same way. The discussion topics will include "what is rest?", and "creating a routine of have-to's and would like-to's".

Maybe tomorrow will be different.

Emily

in my life

Nobody plans to live with a chronic illness. With our ever increasing knowledge of illness and disease, and we have become a society where we can sometimes go to extraordinary measures to prevent illness. It goes without saying that a diagnosis is almost always a shock.

Before June 2006, I was planning my life with ease. I was making decisions for myself and for my future family based on my health and my talents. I had no reason not to. I had recently accepted a new job, choosing opportunity over money, and Jason and I had purchased a new house as not only an investment, but for a better house to bring a family in to. Life was only going to get better.

And then without warning, everything changed. Without an introduction, no annoying yet curious symptoms, MS was now a part of my life.

The job, and everything connected to it, are now a thing of the past. Instead of this loss allowing me to live under a gray cloud, I use memories of my work days and my success in a short time, to give me confidence.

The house, bright and spacious, selected to hold Jason, myself, our two cats, and a baby playing on the living room floor...is without the later. And this is where I have found myself for months...trying to figure out what role MS plays in this part of my previous plans.

*In previous posts, I have mentioned that two months before "I got sick", Jason and I were referred to a fertility specialist following years of unsuccessful attempts at conceiving. Early this year, I underwent surgery to remove extensive endometriosis. The other relevant information is that further health "screw ups" have made the fertility landscape even more sketchy.

I do not intend for this blog to become about our attempts at a family of 3, but rather how MS is related to all of our decisions, including those related to having a family. I can't keep the two things separate.

Earlier this year, I stopped my Rebif injections. It is recommended that a woman halt her injections a minimum of 3 months prior to trying to become pregnant.

The recent revelation that the MS is in fact progressing has given me great pause.

My 35th birthday has also given me great pause.

My desire to be a mother, and a parent along side Jason, has given me great pause.

My MS clock is ticking. My biological clock is ticking.

I am willing to give up MS.

Emily

a brief intermission

Kudos to this newscaster!

Hyperactive Dogs Ruin Adoption @ Yahoo! Video

I need a break

I have had a busy week. Well, busy by my standards. Even with a little getaway thrown in, I find that I need to rest. Today is the last day that I have something "scheduled", until a haircut, late next week.

Yesterday's appointment was with an Occupational Therapist, for a fatigue assessment. I'll post more about that at another time. On the way home, I realized that I just wanted to do nothing, and we were still expecting company later in the day.

So what is "busy by my standards"?

The week (and a bit) went something like this: pick Jason up from work; grocery shop; shop for 3Penny's B-Day gift; pack for getaway to the lake; play games at the lake; sleep in a strange place; pack to return home; read an entire novel in 3 days; go to Curves; my own B-Day dinner; clothes shop for Jason (see the following event for reason behind this one); attend a family funeral; one hour appointment with OT; visit with friends in town from Calgary; have coffee with neighbours; and tonight...for the last act, video C-Dazzle and Jay's kitty cats.

Throw on top of that, daily living: shower, eat, tidy house, and talk.

Did any one thing push me over the edge? No.

Could I have better planned things? Yes, but that may have involved saying, "No".

Do I need to get over the ever-present guilt of saying "No"? Yes.

Is a good night sleep the solution? No. I'm not tired. I'm fatigued.

My full conversation with Jason involved me saying, "Oh yeah, this is one of the reasons WHY I don't work". Every once in a while, I need a reminder. I also told Jason that I am lucky he understands my fatigue. This doesn't mean that he tucks me into bed while saying, "Don't worry, I'll look after everything". This isn't roses and ice-cream for either of us, and he is tired from work. But he knows that his tired is different from my fatigue.

It does mean that he never acts hard done by, and he doesn't say things that cause me to feel guilty. Sometimes I do need him to get me ready for, and into bed. Sometimes he has to finish the things that I started. And sometimes I need to cry, and that's okay with him.

Emily

Cruisin the Dub

Thursday August 27, 2009. A&W restaurant owners have committed to donate $1 from every delicious Teen Burger sold within a 24 hour period to help the MS Society of Canada end MS.

*Teen Burger - beef, cheese, bacon, lettuce, tomato...

Eat up...and don't forget to order onion rings!

Emily

MS reversed in mice

Everyday, I scan a particular website for headlines. I check up on news from the world, Canada, sports, entertainment, health, science and local. When my eye rolls over to the health section, all that I am really looking for is information on MS (yes, it's in the health area, and not the science area). I don't dig too deep for my news, but I do find what I am looking for.

Like today, one of the health headlines is, "MS reversed in mice". Here's the article:

MS Reversed in Mice

GO research GO!

Emily

and take 2000mg of Vitamin D

I shed a few tears today.

I have been walking around as if everything is ok. I mean, I haven't had a relapse since January 2008, therefore, everything with my disease is dormant. Sure, I'm tired. Yes, I have trouble completing sentences in conversation. And if I browse the racks at a store, I get wobbly.

I have considered these things to just be part of the disease, and nothing that I haven't been dealing with since the beginning.

But do you remember how I have been having trouble with my legs, in particular my left leg?

Well, as I suspected, but obviously didn't prepare myself for...the issue with my leg is spasticity. This threw me for a loop. I expected Dr E to shrug it off or say, "Could be". Instead, I heard the words, "there is medicine for that".

For me, the confirmation of spasticity represents disease progression. What I didn't want to admit could be happening, is happening.

Just because I continue to avoid the more common issues, doesn't mean things aren't happening beneath the surface. It also means that this disease continues to be invisible for me, as my leg on a day to day basis is still loose.

As for the rest of the appointment, it was uneventful, and rushed. As the first appointment of the day, in the new location for the entire Neurology Clinic at HSC, I thought that things might be different. Alas, new digs do not make for new attitudes.

The nurse performed most of the tests (heel-to-toe, how-fast-can-you-walk, walk on your toes, walk on your heels). She even asked what questions I had for the doctor, and she answered them herself. When Dr. E. came in to the room, he had done his homework. Not only did he have the results from the nurses investigation, but he asked me what the outcome of my high platelet count was.

Ultimately, I left there with a follow-up appointment for October 2010. My GP will get a letter, outlining the check-in, and a list of suggested drugs for fatigue and spasticity, should I decide to take them.

To me...it's passing the buck...double billing...but I'm just the patient.

Emily