Monthly Archives: December 2018

Realization

I’m in a realization mode. Over the holidays I’m realizing how much I have been in denial. The other day I completely destroyed my photography blog as a result of my myasthenia gravis. My illness caused me to goof up with the computer mouse and delete a bunch of files. Unfortunately, the system my blog is on has no undo command and no trash bin.

It took this unfortunate event to get me to realize, the myasthenia gravis is worse than I care to admit. And, like I mentioned in my previous post from earlier this month, denial and anger are part of the grieving process.

Frustration

Frustration is also part of this. I cannot begin to describe how frustrated I was that I lost all that history in my photography blog. Even restoring a backup did not bring it back. Well, it brought some files back, but it didn’t get it working. I guess it can still be recovered. Unfortunately, the brain fog that goes along with my MG prohibits me from doing it.

Exhaustion

Frustration leads to extreme exhaustion. This single incident knocked me out for days.

I have met others who are managing well with their MG. One such person has the form that mostly affects the eyes. When we were talking about our symptoms he commented how fortunate he has been that MG hasn’t impacted his larger muscles like arms and legs, but only some of his facial muscles.

On the other hand, I’ve learned of others who have been completely and totally disabled from the disease. Recently a dentist in the midwest died from MG. While death is rare these days, it still happens. I did some digging. Most deaths related to MG these days are elderly (late 70s and 80s).

Denial Anger and Acceptance

Denial Anger and Acceptance

Denial, Anger and, Acceptance are all part of grieving.  When you lose your ability to do what you love to do, you’re going to go through these phases.  I think I’m over the denial phase.  It’s now time to deal with the others.

It’s difficult to give yourself permission to be angry I’ve been told.  I’ve always been taught it isn’t good to be angry.  I don’t know where to direct my anger.  There’s nobody to blame, and if there was, it wouldn’t do any good.  Nobody wished this upon me, and I didn’t do anything to bring this upon myself.  They don’t even know what causes MG.  So, I’m not sure how to be angry, but I do have negative emotions about my disease.

Wearing a Mask

It’s easy to wear a mask when you’re in public.  What others don’t realize is their short interaction with me might be the ONLY thing I can muster that day.  For example, when I go to church, that’s about all I can do for the rest of the day.  In fact, it might even put me bed on Monday because I overdid it.

I hear comments like, “It’s nice that you have a good attitude about it,” but what they don’t see are the emotional breakdowns when all you can do is wallow in self-pity.  Because I’ve rested before going out in public, they don’t see me when I can’t open an eye, having dysphonia as I’m trying to reach for the phone, or other intermittent symptoms.

Acceptance

Acceptance is something I’ve come to terms with.  That doesn’t mean I’m happy about my situation, but I’m past that denial phase.  For the first couple of months I kept thinking, ‘Once I get a handle on this, I’ll be out riding my bicycle again.’

The fact of the matter is, I will probably never ride a bicycle again.  The risk is too great.  It is a high risk that I’ll crash, and an even higher risk it will do damage to my muscles.

I accept that my MG has been very aggressive.  For some, MG simply means going cross eyed from time to time.  For me, it means not being able to straighten my back upon rising from a chair — not always, but I have no way to predict when this will happen.  LIkewise, I have no way to predict when I will lose my voice, strength in an arm, leg or hand.  I’ve come to accept that there may come a time when 9-1-1 has to be called because I couldn’t swallow or I can’t breath.

Learning

I can’t continue to wear a mask when I’m out in public.  At the same time, I don’t want to be a downer.  But, if you ask me, “How are you doing?” be prepared for me to be truthful.

I anticipate there will come a day when those people who see me regularly will see me at my worst.  They’ll see me when I can’t turn the page of a book, or I walk like I’m drunk, or some other outward symptom of myasthenia gravis.

Excuse Me

So, excuse me if at some point I blow a cork because I’m angry with my situation.  I need to figure out how to deal with this anger and sadness.  It’s like my former self has died, and I miss him.