Full time work transition

[A7x1823eb]

Hi guys.

I really love my work, it does wonders for my mental health/purpose. I know alot of us blokes (and ladies) are the same. I am currently managing to work full time as a community nurse. I am keen to hear from you all how you managed the transition from working full time to perhaps less with the unpredictable nature of our disease. Did bosses support you? If so how did they/not? I think the thing I am most scared of is not being able to work anymore. Perhaps you still work full time/part time. Perhaps you can no longer work. Please tell me your stories.

Peace ✌️

Will

[tieaknot]

Hello! I can certainly understand where you are coming from…I am no longer working and miss it in so many ways but my path to this point was very “wandering” and was not initially due to my health. I am hoping your boss and coworkers will be happy to work with you to maximize your ability to keep working in whatever capacity you can!

I worked in healthcare but “took a year off” when we moved for my husband’s work so I could be home with my young kids. One year turned to 2 and after returning to our previous home, he was deployed for a year so I planned to return to work after he got home. So 2 years became 3. Then I ended up with a completely unrelated diagnosis and had to have cardiac surgery. It was during that same time that I was starting to have significant symptoms of AMN and after several misdiagnoses and wrong treatments and was finally diagnosed with AMN. The year that followed that was terrible, as I recovered from major surgery, dealt with complications of the surgery (still dealing with some of that) and having to test our young son for ALD (thankfully he was negative) and the mental and physical toll of all of it. Here I am a decade later, not having returned to work. I miss it in so many ways. I think if I had not taken time off for that move I would have a relationship with a boss that would have allowed me to continue to work on a more manageable schedule but entering or re-entering the workforce and starting a new job with my many health issues is pretty impossible at this point. I do some volunteer work when I can and hope to do more when the kids have flown the nest, maybe even a little flexible part time job that is not demanding? I hope so. For now I try to save my energy for my family and am thankful I am in a situation where I can do that. But I sure do miss work. I wish you only the best