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    • #17322
      Michelle Gonzaba
      Participant

      For a little over a year, I have been working from home. Although it was a shock at first, I really have grown to enjoy it. While I do miss the people I saw every day, I love how much my stress has gone down. I also love how it’s made working with MG easier.

      I don’t have to worry about looking weak or stress out about any potential weakness that could impact my job. It is physically easier to simply stay in my home.

      Do you have any experience working from home? Do you like or dislike it? Does it help lower stress due to MG?

    • #17325
      FrancisW
      Participant

      I work from home, but have been doing so for more than 20 years. With MG even that has changed. Can’t use the same normal chair as in the past. Also find myself taking frequent short naps. An air conditioner and dehumidifier are always present and often used.

      • #17931
        Sharon Haw
        Participant

        I also use a portable A/C with dehumidifier in summer and recently added a larger room portable true HEPA air cleaner to my office, which I move to my bedroom at night. In winter, I swap the A/C for a humidifier since the HEPA air cleaner removes some moisture from the air. It’s important to get the type of true HEPA air cleaner without ionization. It’s super quiet and has significantly reduced my upper respiratory MG symptoms and eliminated the need for medication to control them. My generalized MG started with sudden profuse nasal discharge and my right eyelid drooping, and with my MG diagnosed and under control, I was still getting the sudden profuse nasal discharge at least once a month, plus a chronic cough. I’ve only had it one time and the cough is gone since getting the HEPA air cleaner 6 months ago. The cleaner and 6 month filters aren’t cheap but they are way cheaper than what I was paying for medication to control those symptoms. I’d be interested in hearing what has worked for others who have respiratory symptoms related to MG.

    • #17330
      Ronald E. Clever
      Participant

      I wish I could work from home but my boss is not a big fan.  He doesn’t think we get as much done as when we are in the office.  I have a 90 minute commute and not to have to drive with double vision would be great.  I have corrective lenses but they get more expensive each year.

      Has anything been discussed on here about disability?  Is it hard to get with MG?  I also worry about what I would do if I was off on disability.  I need work, to give me a purpose.

    • #17337
      Amy Cessina
      Participant

      I worked from an office for 30 years and it was a chore in the later years. I got laid off early in the pandemic but due to having experience in a field  in demand I was hired immediately. I had 4 job offers and I took the only one that offered me work from home! I like it a lot and am very happy but I do feel lonely at times. But I won’t ever consider an office job.
      I think getting disability with MG isn’t a guarantee or easy. Personally I don’t want it I’d rather work. There are studies that say people with MG who work perceive themselves as having a better quality of life . I personally believe  that the more active I stay makes me believe that I am fine. I personally need that to be ok.  Everyone is different of course and I completely respect that.

    • #17350
      Julie
      Participant

      I was able to work from home for the past 10 months. It was great and I was feeling like I was managing my work life balance better. I had to return to the office for just the afternoons starting 2 weeks ago. It hasn’t been easy. I’m considering looking for full time work from home. We’ll see how this goes.

      Julie

    • #17351
      Ronald E. Clever
      Participant

      I don’t want to do disability even if I am able.  I would rather work but at 61 and with many health issues on top of MG getting another job is not an option.  I weigh over 400lbs and at 61 finding a work from home job would be a miracle.  I also take care of my sister as much as I can.  She has dementia.  There is not enough time in the day and I am just so tired all the time.  I don’t know how much more I can handle.

      • #17927
        Sharon Haw
        Participant

        Ronald, you have my heartfelt sympathy. I realize that working from home or different work schedules is not possible or even desirable for everyone. My mother had dementia for the last 10 years of her life and since my MG didn’t emerge until after she passed, I can’t imagine how challenging it is for you to deal with MG on top of working full-time and helping your sister.

    • #17725
      Sharon Haw
      Participant

      I’ve been working at home since March 2020 and within 2 months, my doctor cut my blood pressure meds in half. Definitely less stress since I’m at home alone all day.  I worked in an open workstation environment where I couldn’t concentrate and stayed 4-5 hours after work to get my work done. Now I work 4 days a week and still get all my work done with time to spare. One clear benefit for my MG is that if I have insomnia, I can sleep in and wake up with just enough time to shower and dress for work. I take my laptop to grab a coffee and cereal/fruit, then have an egg and toast for “second breakfast” on my break later. I could never have done that in the office! I have a much healthier lifestyle now and my neurologist said that if I continue to be stable, in summer he’ll retest me to see if I might be in remission. Fingers crossed.

    • #17926
      Sharon Haw
      Participant

      Since I started this thread, I continue to work at home (since March 2020) and my health has steadily improved due to less exposure to others, less stress and more time to focus on wellness. I’ve kept my generalized MG firmly under control, with only a very occasional stumble if I’m tired.I’m 67 and my energy levels were in decline. I changed my full-time work schedule to 4 days (M-Th) @ 9 hours in 2019, and I’ve been using my vacation to take some Fridays off this year, with another significant improvement to sleep quality and energy levels. My employer tried to force me back to the office in August but my neurologist was willing to provide a letter to keep me working at home, at least temporarily, then the Delta variant rose here and the work at home order for non-essential workers was extended. I’m 300 lbs but I slowly lost 10 pounds over the past year and the slow downward trajectory continues. I have more time to plan and prep healthier meals and snacks plus, in 2020, I added two scheduled Health breaks into my work week – 30 minute Zoom calls with my personal trainer to review and adjust my workout to my energy levels. I also met my goal of keeping up with my 3 year old granddaughter. I’m taking 6 months off work before I consider a part-time job but only if it is work from home.

    • #17933
      Scott White
      Participant

      I’ve worked from home coming up on 16yrs this 2022, was diagnosed in 2016 with MG, so working from home has allowed me to manage my MG, much better then most and still provide for my family, I support my wife and two kids, the company I work for is extremely flexible & my manager is very supportive of my illness, even though I got sick I still feel very blessed , since I stopped working in an office long before I got sick, I don’t really miss being around coworkers anymore, and being able to be there constantly for my children has also been a blessing as my kids have always had their mom and dad there for them, I don’t think I could ever go back into an office ❤️❤️❤️

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