Ok. Here we go...my first subject for Invisible Illness Week this month of September, 2011. As I mentioned previously, this blog will not always be about invisible illness. I thought when I started one, it would be more about my creative life as an artist. But when I think about it, the two have intertwined so much in some ways, this was a perfect way to start and be supportive at the same time. Also, I have decided for now that I will not go into the specific medical descriptions of my condition. There are apparently four of them by medical codes if you will, but I feel labels are not the issue here. It is easier to say that what I have falls into the autoimmune category. There are many invisible illnesses, and not all fall into this one. But that is mine. And any of you out there who have autoimmune conditions know that the symptoms can be similar from one label to another. For instance people with RA may also experience the same symptoms as someone with MS or Lupus and so forth.
So I entitled this entry Background Noise. Sometimes you can coexist with background noise and be ok. Other times, the background noise suddenly, and without warning, turns up louder and you have to go and take care of it. Turn it down somehow. I would say this very accurately describes my daily life. For almost three years now I have dealt with this condition although I realize now, I have had it far longer. The background noise was just low enough that I chalked it up to other things. You know...I am not exercising enough. I am not eating right. I have a bad attitude. Maybe I am depressed. You know...the blaming myself for being sick syndrome. Yadda yadda....and then one day BANG! Literally overnight the background noise got LOUD. And here I am. And...guess what...it was not all in my head.
Do not get me wrong, attitude plays an important roll when you have health issues. And I have done my best to keep my spirits up despite it all. I have been very lucky with the support system I have. But I have to say that the best thing I have done so far is to ACCEPT the background noise, and deal with it. For almost two years I kept seeking labels and cures. I kept thinking it would go away. And even more pressure...to hear the ones closest to me say "It is gonna go away, you will be fine." I think that is because it is comforting for them to say and think this. Even believe it. And bless them for it-maybe if they believe it for me, it will. But what I found is that searching for an end to this, and trying to be positive that it will suddenly and magically vanish, was making it worse. It was just too exhausting mentally and physically to add that burden to my everyday thinking. It was keeping me from trying to live my life, too. Instead, I had to switch it in my brain to "managing my illness".....in other words...turning down the background noise best I could. And since I have taken this path, things have gotten a little easier.
This has taken a lot of work on my behalf. And it is a slow going, learning process. Every piece of my "health puzzle" takes time. What I strive for now, is feeling better. Maybe not cured, but better. Getting my hopes up to be who I used to be just puts more stress on me. My support system is pretty amazing and I feel very lucky as I know there are those not as lucky as I. My husband, my parents, my friends and the group of doctors I currently work with, are a major blessing in my life.
And then there is me. With this illness, you have to try and help yourself. Letting the doctors worry about your health just does not cut it. You have to do your own research, your own investigating, your own thinking. Sometimes that means forcing yourself to do things that are very difficult like completely changing the way you eat or completely avoiding certain situations that you put up with before that bring on symptoms. It means doing things for yourself so that you can have a more full life. And most of all, you have to be patient with yourself and others.
The background noise so far is low this morning, but then again I have not gotten out of bed. Sitting propped up with my laptop, a cuddly Chihuahua on each side of me, I feel ok. But lets see what the day brings...it is beautiful out this morning and that makes me smile as I enjoy the way the breeze blows the curtains through the open window with the fresh scent of morning air. No matter how I feel, I can honestly say, that life is good.