The blogs have collected over the last few weeks, covering subjects such as how to minimize stress in your life, finding your own space, or learning to embrace you present situation, but I have yet to explain why I started writing this blog. I've been forced, because of an auto immune disease, to spend most of my time at home. This is not something I asked for, or could have ever predicted for my life, but simply my reality. A reality that is so different sometimes than the average person, I might as well be living on another planet, trying to mingle amongst a society that I can only look at from my window, not really be a part of most of the time.
This is not a sob story, nor do I seek pity, but just a driven desire to pass on information that may help those who also have someone in their life suffering from the same disease. For if there is one ongoing theme here, it's not so much the sick person who has to cope with their illness, rather the people around them not understanding their illness. Now the information I pass will specifically relate to my own illness, but just keep in mind that the subject matter is what carries the importance here.
I have been sick now for most of my life, though have been able to craftfully keep it hidden, so as not to disrupt how I'm seen by others. And even though I didn't quite fully understand what was going on with me, or give it a label, the symptoms were still there everyday, whether I paid attention to them or not. I began to suffer in my early 20's, noticing little quirks that after a while couldn't be ignored, and thus began my journey with doctors who would for many many years tell me was either my imagination or that I was suffering from depression. Silly me.....I believed them because after all who was I to question a doctor. But, this is not about doctor bashing here, this is simply as I stated before, a need to pass on information.
I did what I could to have a seemingly normal life. Was married with two children and had the house in the country with a picket fence. The american dream had knocked at my door and I answered it believing that no matter what my body was trying to show me, I could hide it away comfortably in a box and get on with a normal life. Again, if I have any skills at all, it would be those of a magician who could with a wand and puff of smoke, seemingly zap away those daily reminders of something that was not quite right inside me. Whatever it was would have to wait, because I was busy having a wonderful life.
As I grew older I began to experience even more symptoms, that regardless of how hard I tried, I could no longer keep them hidden. They began to take a toll on my abilities as a wife and a mother, and would eventually begin it's path of destruction. I was 40 before I had no choice but to succumb to it's power, because it was far greater than I could take any longer. I had gone back to college, and was working 2 jobs........and simply hit a wall going 100 miles an hour. I finally reached my limit.
With a stretch of road before me of doctors, and several different notions of what I had, I was forced to live a different sort of life. The life of a chronically ill person, which to many people only put a bad taste in their mouth. Again I can only compare it with someone who is living on mars.....different.
I have an auto immune disease called Myasthenia Gravis.....and up until this point I had been able to brush it off until new symptoms arrived that could not be ignored. When your face gets this distorted look, and your voice disappears, it finally becomes clear to others that you are in fact different. Myasthenia Gravis is an autoimmune disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The term literally means "grave muscle weakness." It's caused by a defect in the transmission of nerve impulses to muscles. Where normally there would be communication between the nerve endings and the muscle(that connection usually made with the help of a substance called acetycholine) there is no communication because of the lack of this substance. Antibodies which are produced by the body's own immune system, which normally protect the body from foreign organisms.......mistakenly attack itself.
The result of all this miscommunication is severe muscle weakness in several parts of the body......most specifically the eyes, face, the vocal chord muscles, neck muscles that hold the head up and muscles that control breathing. And if you're lucky like me, it effects most all other muscle groups that literally keep you in a standing position or aid in your ability to do most everything. There are ways in which to deal with some of these symptoms, but there is no cure. No matter what, you are at the mercy of it daily, and either come to grips with it, befriend it and make the changes that are needed in order to cope, or you ball up and hide in a corner somewhere and not live your life.
I myself, though having been living with it for many years, have not given into it and most of the time cope fairly well, but of course I'm only human. Some days are more than I can bear, and find the one word that I use most often ...."no"....tries my patience more than anything. But with its inevitable presence in my life, I can only cope as best I can and realize that it's not really who I am, but just a part of who I am. So I take the parts that are left in my life and try to make a difference in someone elses. I find most of doing that involves helping others de-stress their lives as much as possible.....for there are culprits that live among those with MG. Stress is the worst of them, which is one of those things in life that is almost impossible to get rid of completely. It can come in many forms for those with MG. Extreme heat, most any activity that requires the muscles, and physical as well as emotional stress. And most often, a person with MG usually has other illnesses that come with the territory.....which just adds to the burden.
The granddaddy of them all seems to be the people around you who are clueless about the disease itself and how it effects your body and life. You are not understood because it's not something that people want to see or understand, and most often find more pleasure in watching you, questioning you, and wondering not only why you have this disease, but why you don't handle it in the way they think you should. Some don't even bother to research your illness so they are better equipped to help you deal with it, they just continue to ask you why you can't do this or that, or look at you puzzled when your more obvious symptoms appear wondering what's wrong with you. This only makes you feel even more ostracized.
If more than anything, you learn to surround yourself by people who love you and understand the situation as opposed to constantly questioning how you're dealing with it, including your need to say no. After all, you are in fact, for whatever reason, being asked to live a different sort of life. One that requires a great deal of understanding and acceptance of self and the limitations you are faced with each day..... which is probably the most challenging career on earth. It takes an enormous amount of courage in which to trade a productive successful life for one that is full of the word "no."
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