Finding Meaning in the '2 Hour Window' - the challange of a 'Doer'

I was diagnosed officially with relapsing multiple sclerosis in September 2014.

I have had intermittent symptoms that in retrospect, I can go back as far as my early 20’s. It wasn’t until 2013 that my symptoms affected my eyes in a significant way that I was sent for an MRI and followed up by a neurologist.

I have always worked. I had my first official job when I was 14. I worked hard and always went above and beyond because it was important to me to always do my best.

It wasn’t because it was always expected or asked of me. It was because I learned from my family ‘you always do your best, it may not be the same as someone else, but your best’.

In my career, it didn’t matter the task or the work that needed to be done, again, you always did it and you did it to the best of your ability.

I always did extra in work, not because I was going to be rewarded or acknowledged, but because it was important to me. I know the contribution that I made no matter the role that I filled, that I was accountable for me and responsible for my work.

As my symptoms increased, I would make modifications to manage my day, both at work and with my home life. I did not want to allow MS to win or change my ability to contribute to my life.

I had optic neuritis a couple of times, which has left me with double vision. Starting in 2013 and a year and a half of working with various eye specialists and about 10 different sets of glasses for different distances, I was able to see, for a bit. 6 whole month! Then a relapse that including overwhelming fatigue, another bout of Optic Neuritis left me blind in my left eye for 6 weeks. Until then, I managed, or felt that I was managing. I was off work, not able to drive, not able to read well and feeling like crap.

I had a relapse the previous year that where I had been off work for two weeks and went back to work on a modified schedule. I had slowly increased my working day over a 4-month period and was back to working full time by November.

In looking back and seeing how I was managing my MS at work and home, I was using a ton of energy at work and coming home to my family burnt and tired. However, I felt like I was managing because I was still moving and working.

I would sit in a meeting and be listening to the conversation and have a thought, wait for the opportunity to insert my thought and when I had my chance, I would speak and then… I would say something and silence, I would look at the group and see these blank looks. I would panic and think ‘that didn’t come out right. Or, they are not even talking about that anymore’!! I would feel like the last person in on a joke and then not really getting it.

I would sit at my desk and feel like I was melting into my chair. Having a conversation with someone took an extraordinary amount of energy. I describe it as “A balloon, sometime I would have the air slowly seep out or other times it was like a pin prick and the balloon would pop, but either way, I felt deflated.

I have been off work now on a long-term disability leave since June 2016. I have been working to return to work. I have been working to increase my stamina and energy. Working to find a balance where I can look at returning to work and contribute in a meaningful way.

Today, I look at my ‘window’, I have been working to increase my two-hour window. Daily, I have a 2-hour window that I can use to get things done, whether it is taking the dog for a walk, errands, looking after house work and spending time with my family and friends.

Two hours!! That seems crazy to me that a person who works hard, has always gone above and beyond for their own personal satisfaction is left with two hours of meaningful contribution to life.
It is a new challenge and a new reality. How to not do too much? I have always had the motto of “Work hard and keep pressing on!” This new reality of do less and balance is hard pill to swallow. I don’t like it, I want to be working, I want to be contributing, but, I can’t today, not in the same way I used to.

Trying to strike a new balance is tough and a daily challenge.
What can I do, because I am not a victim I have made a plan. Identify the activities that I can do and eliminate the ones that drain me from my ability to contribute to the value of my life, my family and friends.

It isn’t easy, because it is a moving target. One day I can do the things I want in my two-hour window, other days, I takes all my will to get those same things done.

Frustrating for someone who is a “Doer”. All I can say to those of you who struggle with this same challenge: “Keep pressing on and remember to “be kind to yourselves, you are the only one who can manage you”.
(Originally published https://multiplesclerosis.net/stories/challenge-of-a-doer/comment-page-1/#comments )

Multiple Sclerosis - A fashionable outfit?

This story was one I submitted to Multiplesclerosis.net (https://multiplesclerosis.net/stories/fashionable-outfit/)


I have read stories of how MS has affected others lives. I find these stories inspiring and encouraging as they are reminders of how each of us have our daily and unique challenges.

I recently was reading a story (I can’t remember where or who wrote it… Cog Fog “Brain Fart”), how we, as those with MS wear masks of ‘Feeling Well’.

The idea that we feel like crap, but, when someone asks how we are doing, we say, ‘OK’.

I was reminded that I do this. I don’t always acknowledge how crappy I sometimes feel.
Sometimes an analogy is helpful, to try and describe or express a feeling in words or ways that the person listening can try to understand.

I have given some thought as to some of the ‘MS costumes’ that I sometime wear to describe how I feel with MS at times.

“The Blown Egg”

This costume looks solid from the outside, but considering the contents have been blown out it is empty inside. It looks like it has all the healthy benefits of an egg, but it is fragile and tender. It doesn’t take much to cause shell to crack and shatter, leaving nothing but mess.

“The Hollow Bunny”

This outfit is your typical Easter Bunny, looks solid, like you have it all together, but, if you get over-heated or too stressed, this costume tends to melt, leaving nothing but a melted mess.

“The Tin Man”

This stiff shows up as a strong, ‘got it all together kinda outfit’. However, with spastic joints leaves the wearer of this outfit tired from trying to bend joints that won’t move and an empty place where a heart should be. The heart is missing, because you are not able to do all the things you would like to do, in the time you wish to do it.

There are various more fashionable outfits and costumes we can wear, these are just a couple that I thought of that describe some of the feelings I struggle with when it comes to moving through this journey of MS.

It's the trip, not the destination

Mountains, Meadows and Valleys

In the journey of life, we are never promised tomorrow.  

We are here today, we have a hope and a plan for the future.   We set a path, we make decisions and choices that meet our plans today and influence our tomorrow.

We have a destination in mind of where we would like to go in the future. Where we see ourselves in a year, five years, as adults, as employees, professionals, parents and far into the future of retirement.  

We have our personal expectations of how we want and what we envision our future to be.

Then, there is reality.   We get a job, we get married, have kids, get divorced, get rich, get poor, get injured or sick, look after family members who get injured or sick,  get stuck with debt and so it goes.

During these life moments, we have to alter or change course in order to continue to stay to the destination that we had in mind for our future.

Learning to make course corrections because of obstacles requires resiliency.   When lost in the valleys we have to use past experience, curiosity, the compass of our personal beliefs, strength and courage.

In the process of moving forward into uncharted territory that does not appear anywhere near to the life map that we had planned, it could be easy to feel sorry for ourselves, angry at the world or even give up and settle. 

Today, in the company of women, I was reminded of  the value of resiliency.

Each woman had Multiple Sclerosis.  Each had symptoms that were unique to themselves.   Each had personal experiences and stories of how the disease had presented in different  physical manifestations.  Yet there was a common thread, resiliency.

Not allowing themselves to be stuck in the valley of despair or pity, but, learning to deal with how the map they were given for their planned future didn't look like the trip they had planned.  

Listening to how each had learned to manage their disease, made course corrections or who's trip had been taken to a different destination was a good reminder...

"Life is series of experiences, of which we can plan to where we want to go, pack what we think we need.  However, we need to be open to the possibility of a change of course, even when presented as mountains to high to climb, or valleys to deep to cross.  We will arrive at a destination we can be proud of because of our resiliency".

Trying my hand at writing

There are many things we can do to be productive and active.   Sometimes it is actually moving, sometimes it is just moving your fingers and your brain.

I have always enjoyed spending time writing.  It helps me think.   It helps me work through thoughts and feelings that I have not spent time acknowledging. 

This process is at times a lost art in all of us.   We forget that our insides sometimes need to be outside and shared.   Shared that we are not the only ones that have these types of thoughts and feelings.

Sometimes we don't do this because we are afraid that we will be made fun of, that our thoughts and feelings are wrong and people would make fun of us if we actually said what we thought.

We can continue to be afraid of sharing our thoughts and feelings, but, what happens then?   The hamster wheel of emotions runs faster and we think of all the things that could happen, of the things we are doing wrong, of the things that we should have done better.  

The best thought I have is to be brave, say how you feel.   Write it down, sing it out, play it out on an instrument, talk to a friend, talk to yourself(that one actually sounds crazy, but, have a two way conversation with yourself and be your best devils' advocate.)

Be brave, be strong and try something new or pick it up from something you used to do.   Nothing will be gotten from not trying.

#discoveringyourpassion.

Moving down a path

Finding your passion

And so it has been said, 'Find your passion and you never have to work a day in your life."

Forest Growth

This may or may not be true.   However, if you spend all your time doing the things that make you feel full and alive, there is little room left for work.

This year has had its share of slow downs.   MS has a way of making you slow down.  You don't have the energy to spend in tasks that drain the energy you do have.

Thinking about the steps you have to take to complete a task requires energy.   More than we realize. 

Thinking about what I have to do, or doing the things
I have to do has provided me opportunity to consider the energy we spend in areas of our lives that do not meet the passion test.

What is passion?  Websters Dictionary defines it as, 'a strong feeling of enthusiasm or excitement for something or about doing something'.

How many times in our days do we do something that creates this feeling in the tasks or activities we choose to take part in?   My gut tells me  - not enough.

Its food for thought.. What makes your creative juices flow, what is something that you do that seems like second nature to you, like breathing. 

Maybe that is where you could choose to spend some of your precious time when nothing is promised for tomorrow.

Enjoy the journey and listen to your inner passion.