Finding Meaning in the “2 Hour Window” – The challenge 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”.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (14)
  • LLCAS
    2 years ago

    Exactly how my MS started and continued!
    – Officially diagnosed in July 2015
    – Optic Neuritis (Daily/nonstop for over a year now)
    – I’m a “doer” also and beyond frustrated
    – I’m an accountant and needless to say, I have been very limited
    – I filed for permanent Social Security this past week because I’ve went a year without income. Now I feel like l’ve laid down to die. Like this will be the rest of my life! I can cancel it at anytime but I don’t see it happening.
    – I gave 5 children to juggle just can’t do this everyday (3 home and 2 college)
    – I am beyond exhausted
    – I’ve fallen 11 times this past year! I refuse to get a cane

  • joannmaxwell
    2 years ago

    Your comment of being kind to your self is definitely the best advice! We can’t be kind to others if we’re not kind to ourselves. We have this horrible, devastating disease that is frustrating and overwhelming. We have to find the activities that despite all of our weaknesses bring us joy! It was tough finding a breakthrough from looking at people and saying I used to be able to do that and coming to the place where I can rejoice in the things that I still can do.

  • Nancy W
    2 years ago

    I can identify too. My 2 hour window is longer per day but broken up into 45 minute increments. Stopping working for money left me with time and energy for what I really want to do, without as much have to do.

  • gmc
    2 years ago

    I had to quit being a doer (also a nurse Freedom) since 2008, well, at least a paid doer. I’ve had feelings of guilt, worthlessness, and depression. I finally realized that although in our society almost everyone is judged by their job, that I am so much more than my job.

    If your 2 hour window never gets longer, try to revel in those 2 hours; I try to remember some people (even without MS) are miserable 24 hours a day.

    I applaud your efforts.

  • Mandaem author
    2 years ago

    Yes, Guilt is a huge issue with being a Doer! The ‘I should do this’ or ‘I should be able to do that’… Finding “Value” in our lives in important.

    I am had a conversation with a person a couple of years ago about “value”. We tend to define ourselves by our “Job”, but, we have to identify what are the other things we are other than just an “Employee”. We are parents, friends, daughters, wives, volunteers, citizens…. But we get stuck in being defined by what we “Do” for a job, rather than all the other roles that we actually fill and how important those roles are.

    Thank you for your encouragement.

  • freedom
    2 years ago

    Can really relate. I was put out on long term disability 8 years ago and sorely miss my job and that feeling of contribution to others. ( I was an oncology nurse). I have the same window of time and I still think if I just try harder I could work again. But for me time has proven that is not going to happen. But I still keep on having magical thinking that someday…..we just have to keep on and find a different way to be of use. Much love and respect to you.

  • Applehead
    2 years ago

    Hello: I have just retired. I was on LTD for 22.5 years. I also was a SCN nurse……. I left because of fatigue and memory glitches. I did not feel I was safe. Currently kicked to the curb. Divorcing. Hope……is important. But the pink bubble of positive thinking does not necessarily wok with MS. Best MGC

  • Mandaem author
    2 years ago

    I can identify how you feel. I am 45 and love my career. I was chatting with someone this morning about my ‘2 hour window’. This was someone I work with and it helped them understand the struggle of someone who has always been able to do and manage a lot and being stuck with a short time everyday to do what you need to. Thanks for the feedback. I really appreciate the support. Deb

  • cpcatchik
    2 years ago

    This could have been written by me. Thank you for sharing this. Before MS, I was busy. I volunteered for everything. Now I’m down to that 2 hour window and I hate it. I had to leave work, and my husband goes all the cooking and 90% of the housework because of the 2 hour limit. Shopping, unless for a very limited amount of items is impossible. Fortunately, we are both now retired. I wasn’t diagnosed until I was almost 57 although I had had odd symptoms for almost 10 years prior. I manage to do a little volunteer work a couple of times a week, but walking the dog, taking a shower and doing the dishes is sometimes all I can manage in a day. On good days, I can run an errand as I can still drive, but one is about all I can manage. I miss my old life and hate the new normal. MS has taken so much away from me…I loved your description of going to meetings. I took notes at meetings because my memory was bad. Sometimes I’d read the notes and not even recall the discussion, let alone the details. But your post let me know that I’m not alone. Thank you for that.

  • Mandaem author
    2 years ago

    I am glad to hear that I am not the only person to feel this way. Writing about how I feel, seems to help me put into perspective some of the feelings that I have regarding how MS has affected my life. I hate not being able to do all the things I want to do. Thanks for the feedback.

  • jennyb
    2 years ago

    Thank you for all of that! I like the part about the 2 hour window to get things done. I have a little more than that, but much. My afternoons are pretty stupid!

  • Mandaem author
    2 years ago

    Thank you Jenny, I understand those afternoons.

    One day at a time:).

    Deb

  • DonnaFA moderator
    2 years ago

    Hi Mandaem3, thanks so much for sharing your story and your wise advice! As I was reading your story I was thinking, be kind to yourself, and then at the end – there you are 🙂 It’s hard to give those things to ourselves that we give so freely to others. But it seems to me that you’re still very much a doer. And we’re glad that you’re here to share the fruits with us. -All Best, Donna (MultipleSclerosis.net team)

  • Mandaem author
    2 years ago

    Thank you Donna, It is a tough go when you want to do things and can’t:).

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