coping with myasthenia gravis

Feeling Better Versus Coping Better: How to Tell the Difference

Editor’s Note: This article originally was written by Leanne Donaldson and shared by our partner site Psoriatic-Arthritis.com.

Living with chronic illness, we are often evaluated on how well we are living with and managing our disease. Pain, fatigue, and more all need to be assessed. This allows us to see if our symptoms are getting better, worse, or just staying the same.

Not only are the answers to these questions ever-changing, but so are the specific causes of our symptoms as well as the arsenal of tools available to fight the disease. It is a complex and dynamic ecosystem.

Looking at it from all different angles

Many people choose to treat their myasthenia gravis from multiple angles. I take prescribed medications like biologics, follow a diet that limits inflammatory foods, and try to balance gentle yoga with periods of rest to help with stress and fatigue.

Understanding how everything works together and controlling what I can and can’t is so complex, it is difficult to tell if the daily choices I make really impact my condition or not. As such, I think it is important to evaluate each thing I do.

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After all, I’m not going to waste my precious resources, like energy and effort, on things that don’t impact my life for the better.

Coming back to the same questions

All that being said, I keep coming back to the same questions. Am I actually feeling better, or have I just gotten better at coping with the symptoms of the disease? Could it be that my threshold for pain and fatigue has just increased?

Truly feeling better comes with a few signs that might help you figure it out. Truly feeling better, for me at least, seems to come a little “easier.” I don’t necessarily have to overthink it. I don’t consciously notice my disease affecting my life as much. It doesn’t reside at the forefront of my mind 24/7.

Truly feeling better means I don’t have to monitor and closely calculate every little bit of my usable energy. It feels almost as if managing my disease becomes more of an afterthought, at least on the good days. Then after a few days, I think to myself, “Hey, the past week hasn’t been too difficult. I just must be doing a little better!”

If I am actually feeling better, then managing my pain and fatigue doesn’t reside dominantly within the forefront of my mind and thoughts.

Finding ways to understand the difference

Here is how I, unfortunately, know that I’m not actually stopping my disease progression, but rather have just gotten better at managing my day-to-day life with it.

It requires more conscious thought

Coping with and managing the symptoms of my disease require much more conscious thought and planning. On the outside, it may appear as if I’m feeling better. Maybe I make it to more commitments or don’t seem to require as much recovery time. But, in reality, I’ve just gotten better at managing my limited energy. And it is likely my pain and fatigue tolerance levels have increased, yet again.

I have discovered a new coping mechanism

It might be that I’ve found another technique to manage my stress and therefore experience fewer flares. If I’m just better at coping, then the techniques I’ve put in place or the changes I’ve made are effective. It doesn’t mean that I’m necessarily feeling better, rather that I’ve just gotten better at coping or managing my condition.

The weather gods have been kind to me

Sometimes, it is just sheer dumb luck that I’ve had a run of coping better. It may have been some magical combination of weather patterns and good juju. Who knows?

Is that what it really comes down to, though?

Some days I think I’ve finally accepted the idea that for me, there will never be a “get better” point in my life. I’m with my illness for the long haul, like it or not. It is all just a combination of peaks and valleys, better than the bad, and then still sometimes worse than the worst.

Sometimes there isn’t a clear-cut answer

I live in a fluid existence in which I’m somehow required to know if my medicine is working, if my disease progression has slowed or sped up, or if I’ve just learned how to better cope with living with chronic disease.

I guess it doesn’t matter all that much how you choose to label it: coping, managing, feeling, experiencing – it’s all the same. All of it gets jumbled together in my mind as swirls of brain fog try and pull my limited coherent thoughts apart.

Sometimes there isn’t a clear-cut answer to which one it is, feeling better or coping better. Sometimes, we can get lucky and also experience what I like to think of as the glorious combined effects of feeling better AND coping better.

To be clear, this rare combination isn’t found very often in the wild, and should you experience it, it is imperative that you hold on as tightly as your throbbing hands will allow. If you manage the impossible – coping better AND feeling better at the same time – you might just get a glimpse of the "pre-myasthenia gravis" person you used to be.

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