Monday, July 29, 2013

My Bedroom, My Retreat, My Prison

When you live with Myasthenia Gravis the weather can be your best friend or your worst enemy.

During the recent heatwave the monster reared it's ugly head with a vengeance. My MG affects my limb girdles the most. So I always have weak legs, arms, and shoulders. Some days it's harder to walk then others, it only gets worse as it gets hotter. There are days when a cane is enough support, other times a rollator, most recently I've "upgraded" to a power wheelchair. 

My sister and I needed to run a few errands, so with the heat we decided it was best to use my chair. We decided to go for breakfast, things went downhill from there. Just the few minutes in the heat on the way into the restaurant caused my ptosis to kick in. My arms became so weak I couldn't lift my coffee mug, I had barely enough strength in my hands to hold my fork!  What should have been a pleasant, enjoyable breakfast turned into a freak show. When you body starts to flop and droop and you can almost feed yourself people stare. I've become accustomed to the stares, but it's a feeling that never gets easier.

The AC in the van was my respite, I regained some strength on the way to our next destination. A quick stop at the grocery store proved uneventful. I rolled a few stores away and entered the cell phone store. It was as cold as a meat locker, I could have stayed there all day. Much to my disappointment it was time to return to the inferno outside.  I wheeled up the ramp into the van. I was only in the heat a few minutes, but I could feel the strength in my muscles slip away. My sister helped me get on my seat and get my legs into a good spot, I had turned into a useless rag doll that could hardly keep itself upright...Thank GOD for seat belts!

By this time rest and cool air was what I needed most. I thought my recliner would do the trick, but NOOOOOOO, not today. So into bed I went. I found sanctuary in the comfort of pillows that could be placed just so, providing support for limbs to weak to support themselves. A cool drink in a light weight tumbler with a lid, placed within easy reach. 

My "RETREAT" is full of all the comforts a person with a chronic illness might find useful. Books to read, if you have the strength to hold them, or your ptosis or blurred vision prevents you from seeing clearly. TV, movies or videos are an option, but that too becomes a problem when your vision is impaired. So music has become my "go to" when I am forced to spend time in my "RETREAT". I listen to Pandora, or my playlists on my MP3 player. When you are forced to spend time in bed you want to have all the creature comforts around you.  Unfortunately what was once a "RETREAT" becomes a "PRISON". It takes time for extremely weak muscles to gain strength. You get tired of bed, tired of the walls around you, tired of the ceiling above your head. All you want is the "MG WARDEN" to release you on bail or grant you parole!  But all to often we must serve out our full sentence in our own personal "PRISON" just waiting for the "MG WARDEN" unlock the cell...

So to all my fellow "MG PRISONERS" ...stay cool, rest as much as possible, and ALWAYS FACE MONSTER HEAD ON, and keep a "GET OUT OF JAIL FREE" card handy!


  1. Oh I feel for you...the heat does the same to me. I find this retreat or resting to be like a prison at times also. hoping it gets better


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