a mother is resting on her stool overwhelmed in the kitchen frustrated with myasthenia gravis

I Hate It, I Hate It, I Hate It!

Last updated: October 2022

I'm a bit frustrated right now. I'm hoping some of you can help me! I'm going to give some examples of why I hate myasthenia gravis (MG).

Trying to keep a schedule

I'm a pretty scheduled person. Even when I was a stay-at-home mom, I kept schedule of what to do and when. Each morning, along with a cup of coffee, I'd make a list with time frames of when I was going to do what. Even when I was employed full-time, I would get up each morning and make the after-work list.

I guess I kind of get that from my mom. I know for a fact, to this day, Mondays are laundry day; Saturday mornings always for dusting and cleaning the bathrooms. I know because those were my jobs growing up! Vacuuming and sweeping took place every afternoon. But, unless my MG is well controlled or in a remission, there's really no way to set a regular schedule right now. It is challenging to get anything done on time with MG.

I'm not lazy

Looking back, I'm sure I made those lists because I had undiagnosed myasthenia gravis, all my life. That was my way of making sure I got things accomplished and didn't convince myself I was just being lazy. I had heard that from others all my life. I knew it wasn't true!

If I didn't get something done, I would always make sure it was on the priority list for the next day.

My home has never been spectacularly clean, but I can guarantee that at least twice every year I would clean, every wall and ceiling. Every nook and cranny was scrubbed clean, even with life as a "soccer mom" and working full-time.

Raising kids and MG

I always had to chuckle when my oldest son would proudly introduce me saying I taught him how to cook, clean, drive, fish, hunt, and sew! Then ended it with ... "well, pretty much everything I know how to do, Mom taught me!" (I have 3 kids, they all learn the same stuff.)

Funny ... I now realize the basics things my kids learned, like cooking and cleaning, stemmed from my lack of ability to physically do all that stuff myself. I knew when my kids were having to help me get dressed, something was wrong!

I needed naps, the kids didn't. I just didn't know I had MG. I've always been able to go for a while. Then I needed stop to rest. For my kids this was normal.

My reality now

Now I don't make lists anymore. I mostly think about things I want to accomplish. Although, in the last week, I was actually able to drive on my own 2 times. It was not far, but for me, it's been almost 2 years of not driving.

I also got some old carpet off 5 steps, cleaned them up, and got them ready to redo. I added stick-on curtain rod holders and put curtains up. Although, half the curtains have now fallen down. It never ends for me!

I was doing good enough. I even applied for a part-time job! Thrilling ... especially when I got a call about the possibility.

But now, again, all of my energy is gone. I'm not sure when I'm going to get it back. Can I have a job again, please? This so very frustrating! Out of curiosity, what is life like not having MG? I truly want to know!

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