Myasthenia Gravis News Forums Forums Mental Health and Self-Care Imagining a Life Without MG

  • ANITA A. TARLTON

    Member
    January 21, 2022 at 9:29 pm

    I remember my life before MG.  I mourned the loss for a long time.  Then, I decided slowing down some wasn’t such a bad thing.   Life’s easier when you accept yourself.

    • TheresaG

      Member
      January 24, 2022 at 3:04 pm

      Anita that’s very positive input and I love the thought of it. However, I have so many to-do lists that I can’t get to the end of in order to slow down.

      Until then I just keep pushing that ball up a hill and the days I can’t I don’t. I am getting better at accepting that.

      It would be so nice not to have this limitation.
      I feel sorry for those of you that acquired this at a young age.

  • Deb Couraud

    Member
    January 29, 2022 at 12:42 pm

    I hate Myasthenia Gravis hate it. I want my life back hopeful Rituxan will help with that . My neurologist told me to not push to exhaustion try to stop and rest but when I a few good days I go for it. He said not stopping and pushing sets me up for flare ups. My whole life I have been a go getter . Gosh I don’t want to be on the pity pot but it’s been a hard 4 years. I am learning to take breaks and rest when I have to. I have learned to respect the disease and the limitations I am adjusting to. I can walk a mile or 2 okay great but I can’t climb or hike 6-10 miles anymore . Heat is a killer so cool weather is a welcoming event.

    I had huge plans for my retirement to travel, hike, camp National Parks and some International destinations. I managed to go to John Muir and walk the easier trails, Watkins Glen, Yellowstone, local Wildlife Refuge parks. I am grateful for that but it was earlier in my MG and I have worsening gMG now.

  • Delia Hernandez

    Member
    July 3, 2023 at 6:43 pm

    Many people tend to use this to somehow feel emotionally down. It is a bit unfortunate. I hope that people become more aware and grateful for their circumstances.

  • Kent Estes

    Member
    July 5, 2023 at 2:52 pm

    I’m reading the posts on this topic and I notice a trend.    Those in the first stage of “grief” which is anger.  Then there are those who live the “glass is half full” attitude towards MG.  No, we can’t do everything we used to do but there are still many activities we can do.  “Monitor and adjust” is the battle cry for all MG patients.  Last comment … live the life you have (to the fullest) not the life you wish you could have.

  • Debbie Butler

    Member
    July 5, 2023 at 3:22 pm

    I was diagnosed 30 years ago … the first year was awful because I was used to being on the go all the time.  It took me a year to figure out I’m good for 30 minutes and then I have to rest for a bit.  The last 29 years have been good because it’s automatic now … work for 30 minutes and rest.  Once you get in the habit, you will find that you can still do all the things you did before or things that you want to get done.  My washer and dryer are in the basement … so I wash clothes at night before I go to bed and when I wake up in the morning I go down and put them in the dryer … later in the day I go down and take them out of the dryer.  You just have to find a routine that works for you.  I do just fine now and don’t have any problems.  I have MG, it doesn’t have me and I don’t dwell on it.

     

  • monique-shea

    Member
    July 10, 2023 at 3:16 pm

    My issue is I try to push. Y self too much and I end up in crisis.

    Any helpful hints?

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