you are

You are a somebody

I had an extremely difficult time watching my career come to an end. It was the last thing I ever thought would happen, so when it did I took it hard. I did all I could to hide my cognitive problems from others. I fumbled my way through each day knowing that life was changing yet refusing to acknowledge those changes.

As a computer programmer, I could meet any challenge thrown at me and beat it. I developed some amazing systems and was proud of my accomplishments. When Multiple Sclerosis came along and began disrupting those abilities, I didn’t like it one bit. I would try programming but just couldn’t get my brain to work.

I struggled with everyday things too like trying to remember if I had washed my hair while in the shower, so I would wash it again just in case or forgetting I had something in the oven even with a timer set. Who could burn a casserole with a wonderful smell filling the house and a timer going off? Me!!! So, to get confused looking at code, the very code I, at one time, could decipher in my sleep…that was devastating.

The day I made my decision to resign, I cried. Not just one tear either, a flood and an ocean of tears. I covered it up well, but my heart was broken. Having to walk away from my job made me feel like a failure.

It’s been close to three years now and I still miss my job. I find myself trying to do in depth programing from time to time, but can’t seem to do it without a cheat sheet for even the simplest of tasks. I’m still smart, I’m still me…I’m still a somebody.

I do my best to stay focused on the big picture. My career wasn’t who I was. It was only a part of my life. I am so much more than the things I can do…and so are you. For some reason, we put our identity in things that don’t really determine who we are. You aren’t a chef, or a fireman, or a store clerk, or a nurse. You are an amazing, wonderful, strong, inspiring person who has a lot to give even in your weakest moments.

I know it’s scary, the unknown. “How will I? How can I? What about? What next?” I know, it’s terrifying to take a step forward when you can’t even see the road in front of you. But regardless of how you feel, I can tell you with confidence that you aren’t a failure, stupid or broken. You are a somebody…and being a somebody is the best thing anybody could ever be.



MS Gets on My NervesMS WarriorMS Superhero  


55 replies
  1. Chris Keats-Hannan
    Chris Keats-Hannan says:

    I can so relate to this – losing my career has had a massive impact on me.
    It’s a grieving process which makes you feel lonely.
    I’m finding counselling is slowly helping me come to terms with it and guiding me to make new positive decisions in my life.

    Reply
  2. Karen Newsome
    Karen Newsome says:

    Yes. When I get tired (and/or irritable) I start dropping items or knocking over stuff. The more I do the more irritable I get.
    One week I knocked over glass of milk, then water, then iced tea.
    After so much knocking over, I learned to only use plastic container to drink from.
    Thanks for sharing your humor!

    Reply
  3. Phyllis Gooch
    Phyllis Gooch says:

    Me too. Had to fight cognitive problems as well as optic neuritis…one day at work my black and white computer screen looked blue and hot pink to me…I think that was when I knew I wouldn’t be able to fake it much longer…luckily I was nearing retirement age.

    Reply
  4. Aileen Brown
    Aileen Brown says:

    I think the cognitive problem is worse symptom I can cope with the rest but this causes me the most stress which only makes everything else worse although near retirement I had to give up work we just need to learn that it is better for us and try and make the most of it hard but it has to be positive living

    Reply
  5. Tiffany
    Tiffany says:

    XOXOX to you Penelope and all others who have had to slow down. I’m a stay at home Mom of five and helping hubby with his concrete business but just last month I was able to tell all that I had to slow down and remarkably they all jumped in :):):) Take care Penelope and keep posting because you make me smile at your post, because I know I’m NOT crazy, things happen to others as well!!!

    Reply
  6. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    I know my previous post did not relate to what Penelope posted. But the unwanted interruptions and everyday normal things that are taken away by MS adds to our list of “Why and How come”. We are good people with good hearts and goals we want to fill. Again, be well.

    Reply
  7. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Last night was shot night. My reaction was I could not get out of bed, peed my diaper, was having spasms and could not get back into bed. Made it safely to the floor. My husband covered me with a blanket and gave me some pillows. Took some Baclofen waited for that to kick in. Got comfortable. One cat and one dog were at my side or on it all night. Good nurses. I really need to vacuum. Finally got up and gathered myself, changed and went back to bed and slept all day. What fun MS is. Looking forward to a better 2018 for us all. Be well, stay true and stay positive.

    Reply
    • Laura
      Laura says:

      Sorry you felt so badly Carla!!!
      But you had your furry guardian angels to comfort /care for you.
      Sending gentle hugs and lots of understanding.

      Reply
      • Carla L Broadbent Rogers
        Carla L Broadbent Rogers says:

        Thank you. I guess this was the the outlet I needed. MS since 1993..shots since 1994. 2017 was a year of great loss for me. Prayers, hugs and tons of great stuff to you and yours. Be well.

  8. Ron Wheeler
    Ron Wheeler says:

    I know exactly how you feel! I hoped to go to 2020, but I decided to retire in 2015 when I started noticing some cognitive changes. I’m an optometrist, and I couldn’t take chances with people’s vision! But I’m EXTREMELY PROUD that I was able to go as far as I did! I’m enjoying retirement now!

    Reply
  9. Abi Milton
    Abi Milton says:

    Today was my 1st day back at work this year – now working part-time from full-time, due to the amount of sickness days I’ve had off, mainly due to MS fatigue… It will hopefully do me good, but the stress due to the lack of money won’t!!

    Reply
  10. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope for your honesty, I hadn’t realised that you were only three years away from your job. i have been away longer than I worked at my last job and it was tough but I got here and still miss it bit with this mess I couldn’t do it anymore. Even the earthquakes were 7 years ago and we are still waiting to get our house fixed of flattened and that is a bit stressful. For the first 18 moths after it we hd 18,000 after shocks at greater than 2.5 richter size. Some were as large as 5.5 and sowere smaller than 2.5 so we had a very shakened time. The center of our city was devastated and destroyed and is now getting some rebuild. During all this I spent 6 years (or so the Police reckoned} as a member of the Communitated Patrol looking after the south of Christchurch area. I had to give it up due to my legs failing me and stopped me driving.
    I can still remember the first job I had and the following jobs. They were job and yes I do miss them but I had moved on from each of them. So this was not much different only a bit frustrating.

    Reply
  11. Marianne
    Marianne says:

    Thanx for those encouraging words .I still moarn my lost passion…..flight nurse Every time I hear an aercraft goiing over, my head corkscrew up to the sky…But its ok.Im thankfull for my less physical demanding work but it took a very long time to ajust, I had to allow myself to feel sad, frustrated,angry…..you name all the emotions….The neck still corkscrew…..xxx

    Reply
  12. Rayne Summercorn
    Rayne Summercorn says:

    2 years ago I had to give up my job as a teaching assistant of 20 years due to failing cognitive problems. I stayed as long as I could but the year or so before I left was very stressful. That was as I said 2 years ago, I am feeling a bit of a void, I do volunteer 1 day a week at the zoo. I guess what I miss the most is feeling valued and making a difference,colleagues oh yeah and the money!
    I have to reframe my life and find the same satisfaction in different ways. I have 2 wonderful grandsons, the zoo, friends and Family. …..shame about the money though or lack there of lol

    Reply
  13. Misty Sook
    Misty Sook says:

    ❤️

    I feel my time is coming sooner than I want it to as well and that saddens me to think about but I’m preparing my mind and heart. Coming up with plans to help ease the transition and ensure I still feel like I’m doing something worthy in life afterwards.

    Reply
  14. Marsha Bell
    Marsha Bell says:

    Struggling at work as well. Still working 40plus hours a week but that’s about all I can do. After work and on weekends i am burnt toast, able to do fitz and spurts of housework between vegging. By 6pm I am done, then must fight with all my might to keep my eyes open just to practice proper sleep hygiene.

    Reply
  15. Shanna Kinser
    Shanna Kinser says:

    It was so hard to withdraw, so close to finishing grad school. I took it so hard, but I was also so sick. Not being able to work is quite an adjustment, but I think you eventually find a new normal.

    Reply
  16. JoAnne Rocco Walker
    JoAnne Rocco Walker says:

    Really touched me today i look back at my career and I do miss it however i now can do things i couldn’t do the simple things i took for granted. I have adapted and got stronger and more positive because of my illnesses, im not sure my career would have enabled me to do this. Its hard but life is a challenge x

    Reply
  17. Paula M Stroebel
    Paula M Stroebel says:

    I was forced under Dr orders to stop. I needed assistance walking thru factory. Luckily executives made a decision to pay me in full until the boarding process finalised. now it’s a matter of knowing my limitations. That is the worst. Enjoying the early pension tho

    Reply
  18. Juana Driver
    Juana Driver says:

    Changed jobs several times to accommodate each new loss with MS. Nursing to office to short term staffing and finally receptionist at a gym. Been 12 years and still miss my friends I met along the way. But the cognitive challenges were to much to bear. Accepting a new way of daily living is hard and sad sometimes. Luckily my plants and flowers take me as I am.

    Reply
  19. Paul S
    Paul S says:

    I love the way you write so openly expressing feelings that I can’t quite put into words. I currently still work full time as a Finance Director in the UK but took an ‘easier’ FD two years ago as I just couldn’t cope with the cog issues in my previous high powered position. The process of accepting a lower viewed position was very difficult to accept and there will no doubt come the day when I will have to accept not working at all but I know I’ve still got a good few years yet even if I slowly decline back to the level I started my career at 🙂
    I’ve had MS for 20 years, benign initially and I can still remember the day after a few years of cog issues when I visited my doctor and told him my issues expecting him to just talk about stress etc, and he didn’t. He took me very seriously which was probably the biggest shock since my diagnosis -scary and re-assuring in equal measure!

    Reply
    • Cynthia Trombetti
      Cynthia Trombetti says:

      Been there !! My boss and coworkers were so evil it happen 20 years ago but it still hurts !! If it happen today I would of done more about it!! I had started a business beside working for state government I had some big plans but MS steps in so you try to do the best you can.

      Reply
  20. Vicki Rogers
    Vicki Rogers says:

    I really grieved when I had to stop working. I went into a severe depression over the loss of everyday friends.
    I haven’t been diagnosed with MS. I have all symptoms, except no lesions. Cognitive problems are hard…. And it makes me cry.

    Reply
  21. Stacy Neuman
    Stacy Neuman says:

    I had a hard time as well, when I finally accepted that my cognitive decline was a permanent issue I put in my resignation, they begged me to stay, my coworkers took it harder then I did and that will always mean a lot to me❤️ Sometimes you just have to accept reality and yes, that can be difficult

    Reply
  22. Polly Porter
    Polly Porter says:

    I’m sorry for your suffering and all that goes with it. I’m concerned that I won’t make it to the four-year mark for retirement eligibility. Taking the ego hit will be hard enough without being stripped of my only income.

    Reply
  23. Lisa Critch
    Lisa Critch says:

    It took me about three years for me to realize that I wasn’t the same as I used to be. No longer the multitasking office professional. Now I am happy if I do one thing a day. Life is funny huh?

    Reply
  24. Sarah parker
    Sarah parker says:

    I really feel your pain, I to gave up my job, it’s been 10+ years not working, but my conative problems didn’t stop, and I did a BA and then a masters, still not working,but making it work for me. Maybe a PHD next!

    Reply
    • Sandra M
      Sandra M says:

      Go You, I hope you do a PhD, how would you manage that with cognitive problems, would be amazing if you could. I had to give up that study due to cognitive issues, now even basic stuff is sometimes beyond me. Really hope you succeed.

      Reply
  25. Beatrix Huber
    Beatrix Huber says:

    I took it hard too, as it took me by surprise. But I adjusted. We grew up like the men, and all of a sudden… we had to stay home, and NOT work (which was all we knew), and keep busy AT HOME. What a weird concept, right, Penelope? I’m in early retirement for my thirteenth year now, and I must say, I’m really happy about it. On good days.

    Reply
  26. Mark Mander
    Mark Mander says:

    Thanks so much for sharing. I went through much the same struggles. Sometimes I had wondered if I had left work earlier, would I have the same deficits I have now? But I have learned that wondering about that won’t change the outcome, changing what I do each day will. I am your atypical person with MS. Diagnosed at 55 and am a male. I had a great career and can look back on the legacy I left. I now look at it, that I have simply started a new career, looking after myself ! It was hard at first as my whole life’s focus had been on others. With MS, just like work, each day is different and presents new challenges. It is how we take up the challenge that makes the difference. We can still make a difference in our lives and others by looking after ourselves. I have a whole knew perspective on life and see in a way that my MS has helped me see that “light” so to speak. Remain positive, look after yourself, keep your friends close and enjoy each day.

    Reply
  27. Garrett
    Garrett says:

    Before I left my job in 2005, I remember a colleague asking, “When did you become such an old fuddy-duddy with technology?” My cognitive challenges still increase significantly almost daily it seems. SO happy to have SSDI and a loved one to rely on.

    Reply
  28. Erin Haley
    Erin Haley says:

    Thank you for this, Penelope. It’s also been three years since I had to stop working and I still mourn the loss of my career. I LOVED my job, my coworkers, everything. I know the last year or so, several of my coworkers were covering my mistakes which must have been so stressful and frustrating for them. Losing my ability to do my job well, to my expectations and standards, is the worst thing that MS has done to me.

    Reply
  29. Angela Hope
    Angela Hope says:

    My employer at the time tried to stress me into quitting. Lucky for him I didn’t quit. He needed me. I made it through to now after years of pretending. Now I feel me failing & I don’t know how to cope

    Reply
  30. Leslie Beaver
    Leslie Beaver says:

    It was a very sobering experience to see your proven ability at work slowly and inevitably decline. It was not our fault. And my employer did all that was possible in my case to accommodate and adjust. But it was simply impossible ultimately.

    Reply
  31. Deborah Cogan
    Deborah Cogan says:

    I’m fortunate that my career is ongoing – however – the long shifts nurses work is telling on, the day shift causes me awful fatigue….but I’ll keep doing what I can as long as I can..x

    Reply

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