Can Anybody Understand?

I have myasthenia gravis (MG)! Each minute of each day can change rapidly, leaving my life in limbo when it comes to what I'm able to do. Sometimes daily life can be a challenge, but other times it can feel as though there's absolutely nothing wrong with me.

Fatigued and frustrated

For the last month, it was hard for anyone to tell there was anything wrong with me - including myself. Even in the 90-degree temperatures, I was out working in the yard every day. Awake and ready to go by 5:00 AM. Everyday I'm tired and ready for bed by about 10:00 PM.

... And just like that, for no apparent reason, all I want to do is sleep. I'm so fatigued. Getting dressed requires resting afterwards, chewing and swallowing are an issue again, and my eyelids just want to sag completely closed.

I could say it was from pushing myself for the last few weeks, but the reality is that I didn't push myself. I took breaks and rest. When will it turn back around? Who knows! It could be as early as tomorrow, or a few years from now, if ever.

Can I ever go back to work?

Now that's a double-edged sword, I say from experience. For me, with my MG, I have either been on short-term disability or ended up having to leave jobs because of the flares. Once, I was on disability, then went into remission. This was before I was actually diagnosed with MG.

I may not be able to use any of my job skills at any given time. Will I be able to talk or pronounce words correctly? Not sure there are too many jobs that you don't need to communicate!

It's also usually a requirement for employment to be able to move. Personally, I can't always say I'm able to do that, or at least not for a guaranteed amount of time. Even with a motorized wheelchair, I’m sometimes too fatigued or too weak to use the controller, let alone see well enough to drive, even a wheelchair.

I feel defeated

I'm going to have to say no ... I am not able to go back to work.

Oh, the pain and the agony I've had admitting that to myself. Working pretty much all my life, this is a hard thing to come to terms with. I had dreams and I planned the things that I wanted to do with the money that I earned.

Does anyone understand that crushing, sick-to-your-stomach, defeated feeling? I get this each and every time I do better for a short time. Quite often that that also leads into the questions of, "what exactly am I good for?"

What I am good for with MG?

Well, I don't linger here very long. Over the long run, that really does not do any good. I end up just going down the funnel, thereby causing me to feel sorry for myself, question myself, and totally give up on trying anything. It also makes the MG much more symptomatic.

So, I turn that quickly around and start having thoughts more like this:

I'm a snowflake, let me talk,
Because I don't know when I’ll just stop.
I got things about me that no one else has,
like a sense of humor that makes me glad!

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