I’ve Learned…

I found this article on one of my favorite sites... it's so fitting and interprets me completely.
I’ve Learned…

TGIF...although

I no longer measure time by days...they seem to blend and the difference between a Monday or a Thursday has nothing to do with the day of the week. Some days are better than others. Some weeks, especially lately, have more best days than shitty ones. They mostly have to do with my physical capacity and with my perception of gravity. Curiously, when the weather shifts, gravity increases. It has nothing to do with depression due to the grayness of a cloudy day.
Weeks seem to fly by and the ability to take less Mestinon than a month ago is very motivating. Having come to terms with my capacity, or lack of, and it's change for the better, also relieves me. The dark tunnel phase is separating from the present rag doll.
So it's a good Friday! The cold, cloudy weather only reminds me that Winter is closer at hand, snow will arrive and hopefully I will be ready to take up my job at Ski Portillo once again! LIFE IS GOOD :) 

Don't mind if I fall apart, there's more room in a broken heart (Carley Simon)

Stuck in this temporarily broken down body, disobedient to my whims of being an active, hyperactive perfectionist, I set out to explore the secret ways of overcoming the "critical period", convinced above all that it can't last forever, yet not knowing at all how long it would decide to last.

I have to admit I had a hard time accepting my condition and submitting to its limitations. I kept forgetting that I had to go back to the drawing board and restructure my routines and ways of facing the world and life itself to live with a body that looked like mine on the outside, but which had become independent and foreign and unresponsive in a major degree. Basics like brushing teeth or combing hair, getting in or out of bed, getting dressed or undressed, eating or drinking, all became worth the development of intricate and creative strategies or simply finding someone willing to do them for me.  Quite a challenge to the proud soul of someone who, until now and despite the previous MG crises, still was convinced she could do it all.  

The mandatory sabbatical

I managed to sort the obstacles of the increasing muscle fatigue by increasing the amount of Mestinon intake until the end of October 2011. That was the last time I danced properly, on my feet because now I attempt it from a sitting position when music is too contagious.  Thank God for chairs!!!
By mid November, 360 mg a day were not enough. With my neurologist's permission, I kept increasing the medicine until I was taking 60 mg every two hours, 24 hours a day. I wasn't getting proper sleep nor results. My physical capacities kept diminishing and the wheel chair had to be brought in. The only things the MG didn't affect terribly was my speech and my swallowing, which only slowed down.
Prednisone was not going to be an option for me. The possible side effects torment me and I strongly believed and believe that there are many options to explore before reaching that solution. I also have the advantage of a great tolerance to high doses of Mestinon, albeit with slower results.
So, with my neurologists permission and my doctor cousin's advice, I set the daily limit to 1500 mg, stayed mostly at 1200 mg popping two pills at a time of both regular and time-span, and was able to hang in there until the "myasthenia downhill" began to slow down and finally revert.

Striving for continuity

Life switched to slow motion in November, but the rag doll state started creeping in inadvertently long before (hindsight is very helpful in order to move forward).  I felt the urgent need for a vacation, something uncommon in me. I love my work...I love hard work and enjoy it.  Then my eyes started acting up. I chalked it up to age...you know, the arms get shorter. My ability to judge distances when driving or skiing a race course were slightly impaired. When September arrived, a killer flu got a hold of me and I spent 2 days in bed with a fever.

The ski season ended and we all returned to reality. I had to once again face up close my father's slow death, my one sister's obsessive rebellion against the indifference, abandonment and indolence of the rest of our siblings towards his suffering; my son dropping out of school and the state of my personal relationships.

The snowflake disease

I've been meaning to write about this companion of 22 years which makes it's appearance every 10 years or so since I became aware of it...and, curiously, I just found out they call it the snowflake disease.  That's a very fitting name.  Myasthenia gravis is an especially unique affection different in each of us who have the privilege of experiencing it.

I'm not a masochist.  I'd rather have control over my body again, but I have the Snowflake to thank for the heightened awareness of knowing I sometimes possess a body and for the creativeness of dealing with my environment during those times when I'm trapped in the rag doll.

Since November 2010, I am trapped by the rag doll once more.