It is 11:11PM, on a random Monday night. I am listening to my husband breath deeply as he sleeps. My dogs are sleeping near me, Dezzie at my feet and Dora is lying to my left. I am awake. Painfully awake! I know what is happening, I know what I need to do to make my days and nights tolerable again, but I just… can… not. It seems too hard. It looks too big, too much, too everything. I can’t. I can’t. I can’t.
(Well, this is ridiculous.)
This happens to me. I hate to assume, but I believe it happens to others as well. I’m stuck! I am over 20 years into this disease, and I feel stuck. My fibromyalgia is manageable, as much as it can be. My co-existing conditions have multiplied and are getting worse. Medications that use to work, do not. Home remedies that seemed to work no longer do. I have to seek out new treatments all over again! Buy the snake oils and hope one is the real deal. I have to become that test dummy again, and I just don’t want to. I say can’t, but it’s more of a don’t want to.
(I need to get it together before I don’t have it together!)
I know things, a little bit about a lot of different topics. I can hold my own in most conversations. I do understand what fibromyalgia is and how it behaves in each stage. I know what you will go through because of how fibromyalgia presents itself the first few years you have it. Then it is all a mystery! Once you get into year eight or nine, things start to change rapidly. This is where I see the most significant division of how people deal with fibro.
Each person’s experience is unique, and with time, their ability to handle their disease can make or break them. The deciding factor many times comes down to their support system and have they built a healthy one? Of course, they must be able to deal with their overall physical and mental well-being. These coping skills are usually in place by the eighth or ninth year. Sometimes it takes a bit longer to get boundaries established and medications dosed correctly, but an individual is very near to establishing their patterns to live the best life they can with fibromyalgia.
(I was there, and now, I have to start all over.)
It will soon be 21 years since I was a passenger in a car accident that was the catalyst for my fibromyalgia. I thought I was home free… you are never ‘free’ when what you have is chronic, and it is a disease. A disease that may have anywhere from one to over 200 co-existing symptoms and/or conditions! I get why doctors are frustrated. I am frustrated too!
(I can handle this.)
So in the morning, I will pick up that phone, and make that difficult call to my amazing doctor and we will figure out what to do next. I do have an excellent doctor. I will handle the next stage of this disease called fibromyalgia, and we will see what kind of information I gather to deal with these symptoms until we find a cure.
And I do believe that there will be a cure one day…
(Monday night rant ends…)