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.