Looking good or being sick? Can it be both?

Cleaned up and going to church

You look great! That’s something every woman wants to hear, right? Of course, it is. We all want to look our best. We all want people to see us as beautiful. I love to dress up. I love to look nice. With chronic illness looking great is a double edged sword.  

When I leave the house, I want people to see the good, but I also feel like getting dressed and looking nice is like putting on a mask. Few people know how bad I really feel on a day to day basis. When people see me out and about, they think I must be feeling better and maybe I am even well.

What they don’t see is that I barely dragged myself out of bed that morning or the more likely story, that my husband and son woke me up every 10 or 15 minutes reminding me it is Sunday and they are waiting for me so we can leave for church. I throw on a dress because most of the time a dress does not put pressure on my nauseated and bloated abdomen. (Thanks, gastroparesis.) Then, I put on just enough makeup to cover the bags under my eyes (thanks to chronic fatigue syndrome and fibromyalgia) and a touch of blush to cover the ghastly pale hue of my skin. Run the brush through my hair a couple of times and voila, I am walking out the door and usually running only a few minutes late.

On a bad day

On the 15 minute ride, I usually close my eyes and try to get a few more minutes of rest. Then, we get to church and I smile and talk to people and rarely does anyone know I am sick except for the few people who know me well and even those selective few rarely know the extent of how I feel on a daily basis. Then, when I get home from such a simple and relaxing outing as going to church, I lay down and rest for the entire afternoon and evening.

Just a normal day

That double edged sword of looking great and not looking sick can be nice for a couple of reasons. I don’t have to explain how I feel to everyone. I also get compliments that I look good, healthy, etc. Looking presentable also makes me feel a little bit down because few people know how I really feel. What makes it even sadder is that likely I have encountered plenty of people like me out there that I am neglecting because I have no idea they are sick either.  

When Being "Tired" Became More Than Just Tired

I always thought people that complained about “chronic” fatigue were just making a mountain out of a molehill. I thought if they wanted to do stuff they should suck it up and do what needed to be done. I thought fatigue was just tired.

I was so very, very WRONG. Last year, I started doing freelance writing. I loved working from home. And then, I got tired, more than tired. At first, I was just thinking “I must not be getting enough rest,” or “I must be coming down with something.” Then, no matter how much I slept my fatigue just kept getting worse and worse.

My fatigue was so bad that by January, I quit my freelance writing job, quit blogging, and started sleeping a lot. I couldn’t focus to write, I didn’t have the energy to do my housework, and when I woke up every day I was still exhausted. Even now, I usually get 12 hours or more of sleep. I wake up to take Little Bear to the bus stop and then I go back to bed for the morning. I still have no relief from the fatigue.

This fatigue is an overwhelming, unrelenting fatigue. It is a bone weary tired. It has made me so tired I have sat down on the shelves in the grocery store or Wal-Mart. I often get suddenly so physically fatigued I feel sick. Sitting through Sunday School and church often leads to me coming home and spending the afternoon laying on the couch. Yes, even sitting and listening is too much some days. Fatigue like this is not just tired. It cannot be fixed with normal sleep.

I have been to countless doctor’s appointments and specialists. My test results have all come back normal. I have been to my family doctor, neurology, hematology, and rheumatology. Finally, in July I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. My fatigue is worse than my fibromyalgia pain. Thankfully, the majority of my pain is just an all over ache and at the end of the day my joints and muscles feel sore. The worst part is the lack of energy.

In some ways, I am happy to have a diagnosis, but I really wish it was a diagnosis for something they could fix or treat. Until someone researches and finds a treatment I will spend my days rationing energy.

The spoon theory is so much more a part of my life than ever before. I ration those spoons like never before. I get my groceries from a delivery service more often than not. I pay Little Bear to do more chores than before. I plan my chores and my activities so I can save energy for the weekend and enjoy family time without resting all day. I skip church more than ever because I don’t have the energy to get up and sit through Sunday School and the service. I am learning to walk the fine line between overdoing things and doing nothing. Believe me, I often overdo and it often means resting for a couple of days to regain some slight sense of normalcy.

When someone says they are having problems with chronic fatigue syndrome or seeing a doctor for fatigue. Don’t blow them off. Chronic Fatigue Syndrome is not just plain tired or even exhaustion. Rest will not fix it and sleep will not cure it.

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