Here is something I wrote when going through three years of torture when applying for disability benefits.
Chronic Fatigue Syndrome(CFS) also known as Myalgic Encephalomyelitis(ME) and Fibromyalgia(FMS) are chronic illnesses that affect my muscles, joints, tissues, cognitive brain function and sleep. They include pain, physical, and mental fatigue. There are also numerous secondary symptoms. Below is something I wrote to try and describe what it is like having these illnesses (it only deals with the fatigue part of it, not the pain, cognitive limitations, or secondary symptoms).
Imagine you have a full day of work and errands planned……you discover the needle on your car’s fuel gauge is broken. It reads as empty. So you ask your spouse “Honey, do you remember how much gas is in the car?” They respond with “I am not sure, maybe around a quarter of a tank?”
You cannot just fill up the car with gas…. Let’s say the gas stations are closed/on strike.
There is NO WAY you can get to work and home AND do all of your errands. So you need to prioritize and use your best guess as to how far that possible quarter of a tank will take you. You need to work. You need to get the kids to soccer practice. You need to pick up dinner. You obviously need to get home.
But something has to go or you will be stranded without gas somewhere in between those errands. Suddenly you have to constantly think about how much gas you may be using to get from point A to B. You have to carefully plan each move to get the maximum use of the fuel you have left.
Imagine how stressful that day would be.
That is what my life is like on a daily basis. I wake up never knowing how much “fuel is in the tank”. But instead of prioritizing work and getting kids to soccer practice, I have to choose between showering, shaving, brushing my teeth, drying my hair, cooking dinner, doing dishes, talking on the phone, doing laundry, reading a book, walking up and down stairs, getting some groceries, socializing with friends, going for a walk,…….
There is sometimes not enough energy in a day to do all of the “necessary” things. Sometimes days go by without a shower because it is too physically exhausting to manage.
I never know how much “fuel is in the tank” until it’s gone. That may happen early in the day before I’ve done the basics, or it could happen in the middle of a grocery shopping trip. Rarely will I make it through an entire day without completely exhausting myself.
I have to cancel social engagements at the last minute (or turn down last minute invitations) because I’ve used up all my energy. If I have an appointment or planned outing (such as buying groceries) I need to carefully conserve my energy for many days leading up to the “event”. Even with careful energy conservation I still end up having to cancel these plans frequently.
The difference between me and a car is that when a car runs out of fuel it stops-----dead. It could be in the middle of a freeway. That car will not move again until it has fuel.
A human body has amazing resources for dealing with short term lack of energy….so I push myself to finish what I need to do because I am not “dead”. But each day I do this it puts me into sort of an energy deficit, so that each new day is started with a debt from the day before. This debt adds up quickly and leads to what is known as a “fibro flare”. This can limit my activities and cause great pain for days or weeks, and sometimes even months.
It is a careful balancing act to do as much as I can without doing too much. Each day is different. It is impossible to predict when I will have a good day.
Malia
**Praying…
I too have used the fuel analogy when explaining it.