From M.E. back to "me"

One of the hardest things about having ME/CFS is trying to explain how sick you really are. For me, my symptoms are moderate to severe at rest, (according to Dr. Bell's scale). I have seen others who are much worse off than me. Completely bedridden. Unable to care for their most basic needs. Unable to sit upright. Unable to speak. Some are fed through a feeding tube. When you see this, you realize, this is so much more than tired.

 

The term chronic fatigue syndrome, likely came about because those of us with this illness have never experienced anything like this before. Saying "I'm tired all the time." is the only thing you can liken it too, because there seems to be no other word in your current vocabulary.

 

After years of having this disease and learning more and more about what's happening to my body, I realized why no one understood what I was describing when I read the IOM's new criteria for ME/CFS. They do not use the word fatigue as the main component in the way previous definitions did. But it was the continued use of the term "post-exertional malaise" (PEM) that made me stop and think.

 

PEM is when you push past your bodies energy reserves and it results in what I call a collapse or a crash. 

 

Imagine you lived in a world where everyone was given a cell phone at birth.  You only get one your whole life. There are no replacement parts. There are no land lines. You can only use your own phone to make calls.

One day, something goes wrong with your phone. You don't know right away what's wrong, but you find that you can't always make calls when you want too. Sometimes your phone is working, sometimes it's not. Sometimes it doesn't work for days. Finally you figure it out. It's the battery! The battery is weak and doesn't hold a charge well and for some reason every call you make drains the battery faster than it did before. You also realize if you don't let your battery fully recharge, the situation is worse. And if you let the battery drain all the way down, it takes days to fully recharge again.

You eventually learn to deal with this. You prioritize your calls and only call people when you have to. You keep the calls short to conserve battery power and never let it drain entirely. Occasionally there will be an emergency where you have to use it up, but then you pay for it by not being able to use your phone for a day or two. Sometime there's a friend who just doesn't understand why you can't talk on the phone for hours like you used to and you feel bad, so you keep talking and then your phone doesn't work for a week.

ME/CFS is like that. Your body has a limit to the energy it produces. It may not fully charge and the amount of charge may vary by the day. I have learned to pace myself based on the "charge" I have that day. I know that certain activities, especially those that require leaving the house, take more energy than others and if I extend myself I will pay for it. My body shuts down and I'll be in bed for days. I have to prioritize for what I know needs to be done in a day. Years ago when my charge was greater, I was able to work and enjoy other activities, but I still had to pace myself and rest frequently. At the time I didn't know that pushing past my limits would make things worse and that may be why my ME is so severe today. These days I am housebound and bedridden a great deal of the time. If I have to leave the house for an appointment I have to budget he energy needed for getting a shower that day, and may need to be in bed the entire day before and after. An unexpected event that requires leaving the house and was not planned in the "budget" will put me in bed for a week or more depending on the duration and stress of the event.

 

Often times it's too exhausting to explain to someone how I feel on a daily basis. Especially if the person doesn't believe ME/CFS is a real illness or has been misinformed about the disease. That happens more than you may think. For one thing, ME/CFS is an invisible illness. When people see me out of the house I look healthy. Another reason is the horrible name Chronic Fatigue Syndrome (also previously referred to as Yuppie Flu). I find this name trivializes the severity of the illness. It would be like calling breast cancer, "lumpy boob syndrome", or Alzheimer's. "chronic forgetful disease".

 

Many people have chronic fatigue (tired all the time) as a symptom, which is not the same as Chronic Fatigue Syndrome. Chronic fatigue is a symptom of many illnesses. You can be diabetic, hypothyroid or have cancer and be chronically fatigued. CFS is its own disease and yes, the symptom of fatigue is a profound part of it. But it's much more than just being tired. It's the kind of fatigue you may have experienced if you ever had the flu or mono. When you couldn't get out of bed and you crawled to the bathroom. Now imagine if that never went away. That's what ME/CFS can be like. 

 

Another problem is that not everyone with ME/CFS in this incapacitated. If you read my story, you'll see that I wasn't always this bad. Some start out this way, others, like me, deteriorate over a period of months or years.

 

So here's how I like to show people what it's like to have ME/CFS. Below are some articles and videos that I feel explain it well. Feel free to direct anyone to this page to help you explain it to them.