Feeling Defeated by Myasthenia Gravis

This week we've had high heat along with high humidity. I don't know about you, but for me, it's been a real struggle.

You might have other triggers for your myasthenia gravis (MG) other than heat and humidity. But, I am sure you will still be able to relate to how defeated it can sometimes make you feel.

My muscles are weak

It's hard enough to move around and do the things that need to be done daily. But now, with the heat and humidity thrown in (or whatever your trigger might be), it just seems to make my muscles not want to work even more.

Even when I take Mestinon every 2 hours it does not help me keep up with what my muscles are requiring. I'm also not able to drive due to muscle weakness and fatigue.

I just want to curl up into a ball and sleep or cry ... not sure which, maybe both! Can anyone relate?

Problems with vision

Along with the vision problems associated with MG, I experience some that are due to prednisone. My eye doctor assured me that my vision would improve as soon as the prednisone is lowered.

Eventually, I will only be at a maintenance dose of 5 mg. But in the meantime, I am too cheap to buy new glasses with a better prescription for short-term use.

The symptoms keep coming

Just about the time I think I’m feeling better and start doing something ... bam, it hits me! The brain fog is pretty sporadic. But when it's thick, it's like pea soup.

It causes my head to feel really heavy and my neck feels weak. Swallowing and choking have been worse during this heat also.

I'm having tightness around my diaphragm, especially when going outside. And, there are heat advisory warnings. This type of heat can cause breathing issues for everyone whether you have MG or not.

Honest about my feelings

All the naps in the world are not going to help me. So, I just slow down where I can. Even, if that means doing nothing. There is no use getting worked up - that will just make everything worse.

This approach comes from years of personal experience and training before getting diagnosed with myasthenia gravis. When I start feeling like this, I allow the emotions to come in.

I have found that if I try and ignore them, I am more likely to feel depressed, anxious, or all of the above. I would rather spend a day being honest with myself about how I'm feeling and get it over with.

Things that come up for me usually include not feeling loved, cared for, or cared about. But I believe all of those things are common feelings for anybody going through an illness.

The victory

The victory is knowing that just because we feel something emotionally doesn't make it true. Especially when we're hurting, scared, or our bodies aren't working like we think they should.

Emotions are as fickle as myasthenia gravis - they can change without warning!