An overview and introduction.
This month marks my two year anniversary of being chronically ill.
On July 25, 2010 I got a virus…and never recovered. I know the date, I know my starting symptoms, and I know my progress through my illness up until I was finally diagnosed at the Mayo Clinic in Minnesota in February 2011. Between July and February, I visited two Armenian hospitals and was forced to stay in contact with two American doctors while I was in Armenia and went through a battery of tests. Then I came home to the States when nothing was conclusive and went through another battery of doctors and tests that eventually led to my diagnosis by process of elimination.
From the very beginning, I’ve had a lot of trouble explaining what it is I am going through.
The first 4 months of being sick, I was in Armenia, and very few people believed that I wasn’t faking it, crazy, or otherwise trumping up my symptoms or freaking out. I have never been a hypochondriac and never will be. I have always been quite accurate with self-diagnosis and awareness of my own body. When I was eleven, I diagnosed myself with pneumonia. X-rays showed I was correct. When I was in Armenia, I even diagnosed myself with mono. I was later proved correct. The problem was, that when the mono virus was gone and defeated, when enough weeks had lapsed that it should have been over, it wasn’t. My illness had become something else.
So what is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome is triggered either by a virus that then disrupts the body to the point where it forgets how to reboot and recover AND/OR by traumatic stress, sort of like PTSD.
What I mean by that is this: when we are sick, say, with a fever, it is our own body’s regulations that give us that fever. It’s not the virus or bacteria doing it. If we lose our appetite, if we stop being able to digest our food properly. If we become nauseous, deathly-weary, if we have a fever-fog, it is our body doing it, not any virus. Our body shuts down our systems to “run on minimal” or tinkers with them, so that it can fight.
My body just doesn’t remember how to flip the switch to run its systems on “normal” anymore. That’s what “Chronic Fatigue Syndrome” means.
If you were wondering about the illness’ name, yes, I have very little energy, but the name of my illness is an unfortunate misnomer. I’m not “just tired all the time” , and to imply such is understandable but also a bit insulting. I know what normal fatigue is. At one point in my life, I went to school full time and had two jobs on top of that. I worked from 7 AM to Midnight nonstop every day.
This is different. I am going to be frank and say–This is worse.
What about recovery, you ask? What’s the cure?
Answer? There is no cure. There are no medications that work. I will go into more of that later, but the answer you’re looking for is that Patience is the cure. You have to wait for your body to recover itself. You have to take care of yourself and be patient with your own limitations. (I know, shocking, no one wants to take care of themselves. They want to push themselves to extremes, make demands on their bodies until you drop from exhaustion at the end of a hard day.)
Self-management is the only way to cope. Being aware of what you can and can’t do. Realizing that saying “I can’t do this” or “I can no longer do that very well” does not mean that you are being “defeatist” or “are giving up” or “depressed”. But it also does not mean you have to let go of your dreams. Slow and steady can win any race. Being frustrated by the pace or your limitations doesn’t help you at all.
Realizing that no matter how hard other people may or may not try, they won’t understand what it is you’re going through. Not even someone else with Chronic Fatigue Syndrome, because every body breaks in a different way. It’s just you and God now.
What about recovery times? Again, it varies. I know someone whose body didn’t break as bad, and she recovered in 9 months. I’ve heard of someone else taking 8 years. Someone else I know has never recovered. There’s a huge range.
I want to point out here that telling someone with a chronic illness “It will be over soon” is NOT helpful. I’m not implying that “hope is cruel”, but I’m saying that I’ve heard regular variations on that theme since the very first day I got sick two years ago. The past, the present, and the future actually collide a lot less than our culture thinks they do. To successfully live in the present, you must live in the present. Learn from the past, plan for the future, but live in the present. There is no other way to survive successfully, joyfully, or so on.
Alright, this concludes my introductory overview. My goal for this month is to increase understanding and awareness of my illness. I have reached the point in writing my novella Queen of the Eight Banners where my heroine must struggle with a lot of the symptoms, limitations, and management strategies that I will be explaining over the next few weeks. So it all works out rather nicely.
It’s been a year since I’ve had the idea to use my writing skills to tackle the problem of misunderstandings about what I’m dealing with. My original plan was to tackle it with religious nonfiction, though I struggled with a way to explain some of my deeply personal, religious/spiritual experiences that have been one of my main coping mechanisms while still being respectful towards them. Not every experience should be shared with the general public. My therapist pointed out that I could also bend fiction to my advantage. So I began the task of starting that soon after.
However, I’ve also been aware that fiction doesn’t reach all audiences, so I’m going to try again in a nonfiction setting here. Yes, I’m commandeering my own blog for the purpose. I wish my blog had a bigger audience so that I could be a greater force for understanding and change, but this is what I have, so this is what I’ll do.
As my last addendum, I want to say that I will be leaving my religious experiences and spirituality out of these next posts. My topics of discussion instead will be much more physical-
- and self-management/coping strategies
Since I’ve chosen four topics, they will appear over the next four Fridays.
Here we go!