Friday, May 18, 2012

A New Way of Living

Me Summer 2011 at Wolf Creek Indian Village and  Museum.
 I had to rest a lot on the job. Not at all like me.
Photo courtesy of Shirlene Thompson

My New Life - Living with Chronic Fatigue Syndrome

I have unfinished drafts of blogs pending and I hope to finish the Native research saga soon. It is funny how life changes so quickly. You have this plan you see in front of you. Things you are going to do, sort of a murky future but you know pretty much what you want to do. Well life is what happens while you are making other plans.

I had a job I dearly loved to do. Fit right in with my love of history, then I got sick.  I had worked at Wolf Creek Indian Village and Museum for 12 years. I was their curator, guide and programs manager. I had just worked up to having salary and benefits and the village was being rebuilt, my work was rewarding. Life was good!

Then it hit. One hot summer day last year, I had  a really irregular heart beat. It was strange, I'd never experienced that before and this sensation stopped me in my tracks. It was like for a moment I couldn't breath, couldn't move, but then would go away.

Then other things started happening.  I walked quite a bit in my job since the museum village was 1130 feet down the hill. At least 3 times a day I would make that journey. But all of the sudden a walk I had taken probably thousands of times seem to be a very big chore. I had to rest on my way down the hill and definitely on my way back up. I wasn't moving like I usually did. At first, I blamed the heat. After all it was July some day's nearing 100 degrees.

But I was having problems focusing too. I lost what I was saying. Could not get the words out or forget what I had said and repeated myself. Visitors were asking me if I was alright?  I had to sit down much more than I ever did on the job. I was also so very very tired, with aches and pains and heart flip flopping every day. 

This picture was the year before my illness at the Bland County Festival of Leaves courtesy of Goldie Kiser. I was always described by my family as "Busier than a one legged woman in a butt kicking contest!" But I was changing and the change was dramatic.  I wasn't able to keep up my work, my family, my duties. Looking back on those first few weeks I didn't know what I know now that I would not get any better.  That what began as something I thought was just a fluke  or would pass would turn into an illness I'm desperately trying to deal with and recover from and it has since July 2011 changed my life. 

I ignored all these symptoms for a couple weeks and then I started having arm pains and neck pains along with an irregular heart beat. Well I wasn't thinking heart attack but I knew something was wrong so one morning before work I decided to pop into the clinic and have them check me out. Well that resulted in an ambulance ride!! Because they thought it might be a heart attack. But it wasn't a heart attack. All they found that trip was that I had two leaky heart valves but they thought that could be controlled with blood thinners. It wasn't that serious they said.

Ok, Let's Get Better

 Well I slowed way down. Had to. My body just wouldn't GO!! I slept A LOT! I kept going back to the doctor because I wasn't getting better. I kept complaining of being so tired and my heart still flip flopping as I call it. They ran more tests and the first ones in late August showed I had mono and I was in the late stages of an event of mono. It was great.... I had a diagnosis that explain being tired and one people get over. Okay I thought, with time I will get better!

Now I took some time off but not much. I understand many take weeks off with mono, I didn't know I had it at first, and the doctors said I was about over it so I didn't take that much off.  I had already worked in 90 degree heat outside with mono. We were rebuilding a village at Wolf Creek Indian Village & Museum where I worked and I loved that part of my job and wanted it finished.

Throughout the late Summer, Fall and Winter, I gave myself some slack. I tried to arrange things when I felt better, took breaks when I was feeling really sickly, thinking with time hoping it would go away. Instead I got WORSE and I have never recovered.

I am so tired all the time, still is one of my worse complaints. I can sleep 16 hours and wake up tired. There were times when I came home from work I fell asleep in my car or woke up on the couch fully clothed, sometimes coat and all, not even realizing I came home and crashed. Every evening and any day that I had off I usually did nothing but sleep.  Everything at work and at home fell behind.

I was having an extremely hard time focusing, lists upon lists and I'd lose the lists. I didn't think it could get worse but then I started having fog outs or what they call "brain fog" in my car and realized this is not normal and in a 3000 pound moving car, it's downright dangerous.

I really became concerned....actually the word is downright SCARED.  Why? Because I didn't know what was wrong and I had no control over it. I really thought I was losing my mind. Maybe had the beginnings of dementia or Alzheimer's disease.


And thus has began a journey of a different sort.  A journey I didn't think I'd be taking this year. Lot's of doctors appointments and so many tests. Six or seven doctors and counting. Each test coming back with negative results, just the Epstein Barr Virus that caused the mono in the first place. Weird symptoms like a low body temperature, headaches, aches all over my body all the time STILL.  

I ended up having to resign my beloved job and file for disability because I couldn't keep up. It has consumed my life for months now and turned it upside down. And it has become an illness that began as something you can define to something you can't really define but is recognized for lack of a better word, as Chronic Fatigue Syndrome.

I have always for the last 20 years or so had some chronic medical problems. Yes we all have medical problems from time to time, but my Protestant side of my families work ethic says you keep going. You work around your sicknesses and keep going.  I have a back injury that gives me a fit and if I am not careful my back goes out more than I do. But you deal with it. I went through rehab to learn to deal with it and worked for 12 years with that condition.

I had a doctor once diagnose me with Fibromyalgia in the 80's because I complained after getting over a flu that my body still felt achy all over and wouldn't stop. After he gave me that diagnosis I read up on it and they called it then the "Yuppie flu". In the 80's many Doctors didn't take that illness seriously so I didn't take that diagnosis seriously either. It was like a catch all for symptoms when tests could not find anything wrong with you. My tests at that time were normal.

I chalked it up to I was just tired and wore out as I was holding 2 part time jobs, going to school full time, trying to take care of 2 kids and a disabled husband. I now realize I have been having bouts of that illness from time to time but I just kept going and muddled through.

I had this wall plate that said, "Activity is Nature's Medicine".  That was my motto. Eat better, rest when you could and keep going. Maybe that was my mistake.

Share for the sake of Myself and others

The reason I am sharing is because people who know me didn't know what happened.  Plus during this it has been others sharing their stories that have helped me realize I'm not alone. I have read things that were inspirational and heart breaking. I have read about the controversy from critics and supporters from all over the world.

Sometimes takes me a while to read because when the "brain fog" really kicks in, you don't comprehend much.  I have in my favorites file on my computer lots of articles to go back to when I forget or find myself reading a paragraph over and over and still not be able to understand it, I go back when I'm in a better frame of mind. As a historical researcher that part of this illness is really BAD!!

This has become my new job. This illness has become my real new hobby. Trying to defeat this illness is my new goal in life.  My thought is if there is ever going to be a cure for Chronic Fatigue Syndrome or Fibromyalgia or any of these misunderstood illnesses it's going to be from those who have it and their families. We have to be willing to talk about it, to fight the misconceptions and push for a cure.

Blow it right open that it's not in your head!!  After reading an article from a researcher that basically said this is mostly psychological, this guy disagreed with everyone Else's work.  I asked my doctor if this is in my head, please send me to a shrink so I can get it taken care of!!! It's an awful illness that robs you of everything. I miss so much because I can no longer participate in my life.

I don't drive, I am house bound and many, many days bed bound.  Being in pain all the time, your mind in a fog and tired is just no fun at all. Basically I feel like I have a flu, a constant never ending, nightmare of a flu.  I wouldn't wish this illness on my worst enemy.

Thank God I have a doctor who recognizes it. There are many doctors who do not still. Even though the Centers for Disease Control has information on their website and knows it exists. The American Red Cross now if you have it doesn't want you giving blood.  

It does exist!  They don't know what causes it, they don't know how to cure it and they really have a hard time diagnosing it. Basically you have to go through every medical test known to man and rule out everything else and if you have these certain symptoms, then they diagnose you with it.

My New Life's Journey

It's taken me weeks to write the above. One of the things that is the most depressing to me of all. I have to write on a good day or a good hour or two when my brain works and my hands work. Oh yes, the symptoms to deal with are multiple on top of being tired. Day to day it can be different. Wake up and your body feels like it has a toothache or someone is giving every muscle in your body a charlie horse. Those are the really BAD days.

There is no predicting or scheduling or controlling these symptoms either. I can plan all I want, set goals all I want. The illness decides if I get to do any of them. After cursing and crying for weeks about this part I learned to accept that is just the way it is.

I am a strong person and I will learn to live with it, somehow defeat it where I can. I don't know how but the alternative is to just crawl up in a corner and let this illness get the best of me. I may not be like I was or ever be like I was but I'm not dead yet.  If anything of this doesn't sound clear, sorry that goes with the territory.

My doctor is going on a theory. He's thinking I had an infection like from a tick where I worked outside. I used to pull ticks off of me all the time. I was negative for Lyme disease but ticks can carry about 5 different diseases. But he thinks some kind of infection has got me in a cycle that is effecting the EBV virus.

By the way 98% of the world has the Epstein Barr Virus so you probably have it too. It can trigger everything from mono to lupus to a whole hosts of diseases or not bother you at all. He has me on another antibiotic this week. I hope it works, I hope he's right. I don't feel any better yet, but I'm willing to try ANYTHING!!

My problem is I no longer have health insurance. Cobra is way too expensive with no income coming in. I'm living off of my family and God bless my caring friends. I hope I get my disability because if I'm going to defeat this I need access to medical care and a way to support basics while I figure this out.

I'm going to try to finish the Interpreting history about Native Americans in Appalachia. I had 4 drafts started on 4 different subjects.  I was finding some very exciting stuff when I just had to stop.

My fear is I know with this condition I will make mistakes in that, but I hope all will bear with me, point them out and help me correct them. I have hope I will get better. It's just a different journey now. A different way to live.  But I am still alive and I have hope!!