Wednesday, August 17, 2016
Bone weary. You hear people say this, but have you ever actually thought about what they actually meant when they would say it. I do because I have different levels of weariness. Of an exhaustion so profound that it takes every bit of energy you can muster to pick up your arm or take a step. A vacuum that sucks the sparks that fuels you. Leaving you feeling like a fish out of water, fighting to breathe.
I have fought this through most of my life. I got to the point, I got tired of telling my doctors that I always felt exhausted. It took everything for me to get up each day and go to work. Forget doing anything after work, I would just be too tired. I had to fix supper in increments. Too weak to fix it all at once. There was no such thing as a quick meal.
It was not so bad until I contracted a serious bacterial infection, that came close to ending my life. After I recovered, it seemed like the exhaustion became more pronounced and would last longer. It took longer for me to recover from simple illnesses such as colds, the flu, etc. They just seemed to drag on, taking longer and longer to recover from.
Don’t get me started on trying to go out for the day with friends or family; to do some shopping, go to the mall, go to the fair. I would need recovery days from these things that once I took for granted. Now I would wake up the next morning exhausted, tired to the bone. And I would hurt. It would actually hurt in my muscles, just from me being active. Doing an everyday thing. I would sit on the edge of my bed perplexed. Wondering if I had done something to hurt myself and had just forgotten it. But no, it was just I was tired.
It wasn’t until I started noticing that I was losing a lot of weight and not doing anything to account for the fact. Sure I had kicked the soda habit, but that had been a couple years ago. No, this was several pounds in a few shorts months’ time. I was also losing my hair. This I think concerned me more than the weight, because I have always been overweight, so knocking off fifty pounds was a hallelujah moment. But losing my hair, that upset me. I have always prided myself on my hair. I have baby fine hair that was never thick to begin with. Now when I looked down at the bottom of the shower, I was seeing fist-sized clumps rushing towards the drain.
I would sit down to comb out the tangles and a small auburn animal would appear upon my desk. This is when I knew I needed to talk to my doctor. Early in the year, I had some blood work done by my neurologist, because we were trying to determine the reason for me having Idiopathic Peripheral Neuropathy. People who have Diabetes will recognize the term, because many have to deal with it. As I am not diabetic, the doctor was trying to figure out what could be causing me to have it in not only my feet but also my hands. To this day the cause is still unknown and we may never know.
One of the blood test he ran was to see if I had Lupus or some other type of autoimmune disease. When my ANA (antinuclear antibody) test came back irregular, he was concerned and sent me for more intensive blood work. Apparently the first test had read high for some reason, but now it was a bit above normal, but nothing to be concerned about. This was the first time I had ever tested positive for this. And I had been checked before because of my family history. I walked out that day not knowing the cause, and was just started on a course of medication to help alleviate my symptoms.
Now after all these months, I was at the doctor again. Telling her how I felt and mentioned the positive ANA. She told me it could be nothing, but she wanted to have some blood drawn and see what was happening. It might be a simple vitamin deficiency and nothing to worry about. So I visited the vampires and had my blood drawn and went home to wonder and worry.
A couple days later the doctor’s nurse called and said she was referring me to a Rheumatologist. That my blood work had come back and had caused her some concern. Now I was concerned. What had my blood work shown? So I went into my patient portal and pulled up my blood test and compared them to the previous doctor’s visit. This time my ANA was back up and my SED rate was high also. I began to worry that I might have Lupus. It had been diagnosed in the family before, so I knew a bit about it.
The day came for my appointment with the rheumatologist and with a fair bit of apprehension I made my way there. I wanted to know what was wrong with me, but on the other hand, did I want to know? The doctor was a nice guy who put me at ease, and I felt good about asking him questions. He told me what all could be possibly wrong and that he would be with me every step of the way. He sent me for a very comprehensive blood panel, I ended up with two vampires working over my poor depleted veins by the end because of all the vials needed. Now it was time to go home and wait, and wait, and yes, wait some more.
A month later I went back to see him and find out what the tests had revealed. The first thing he told me was no, I did not have Lupus. Here I took a deep breath; I hadn’t even realized I was holding my breath. And then he said that I didn’t have RA (rheumatoid arthritis), which had been up on the possible list. He told me that my blood work showed I had arthritis and that I would show a positive ANA from now on. I also still had a high SED rate, but that could be due to my arthritis flaring up. He said not to count Lupus out in my future, but for now I didn’t have. I just carried the markers for it.
So here I was back at the beginning point. True by this time, I was no longer losing weight and my hair though still thin, wasn’t falling out in clumps. But still I had no answers as to why I was always exhausted. I didn’t figure that one out until I was going over my paperwork from the visit and I looked at my list of diagnosis’. There in bold black type were the words Chronic Fatigue Syndrome. I had never heard of it and none of my doctors had ever mentioned the diagnosis with me. So the inquisitive beast I am, I quickly put it into my search engines and started reading. My first stop was here http://www.mayoclinic.org/disease-conditions/chronic-fatigue-syndrome
The more I read the more I kept saying yes, that’s right. That’s how I feel. It felt good to have a name to associate with the symptoms I had been fighting for over fifteen years. I now knew that it wasn’t in my head, or that I was making it up to get out of doing things. I actually had a reason for the way I felt. My journey of discovery didn’t end with the Mayo Clinic website. It opened up a whole new world of support from people who had been through the same thing as I had. People who I could talk to about what I was experiencing and they understood.
Chronic Fatigue Syndrome or as it is also known Myalgic Encephalomyelitis has an informative site at http://www.name-us.org. I urge anyone interested in learning more to check out the two sites listed or do your own web search. And if you feel like this sounds like what you are going through, take the information to your doctor so that they can run the tests needed to diagnose it.
As a writer, I sit here sometimes and just the thought of moving my fingers to type wears me out, but I have decided that I am not going to let my health determine my destiny. I will fight through the exhaustion. And yes, there are days it kicks my butt and I have to back down. I have to step away from the computer and go lay down. You know, I don’t let those days make me feel less anymore. I let them make the good days feel like I am the best. And that I can do great things. So until next time. Stay positive and healthy. And keep doing what makes you happy and fulfilled.