One of endometriosis’ worst symptoms sort of sneaks up on you. When you’re diagnosed, you’re generally aware of the biggest problem you’re likely to have to get used to (the pain). As that’s the problem that’s led you to the doctor or consultant.
Months after you’ve started to get used to chronic pains effect on your body, another handicap rolls in. The exhausting shadow that is chronic fatigue.
What chronic fatigue is
- Long term exhaustion not fixed by periods of rest or sleep
- Your body feels like it has finite amount of energy which can grow or shrink day by day
- Exhaustion on delay (tiredness hours or days after you’ve done an activity, rather than straight afterwards)
It can’t be fixed by
- A good nights sleep (or several weeks sleep)
- A holiday
- Taking your mind off things
This long term fatigue can also mean
- You forget things, such as what you were doing, or things you were meant to do
- You find it harder to concentrate on tasks or work
- More pain from a lack of satisfactory rest
- Getting sick more often
What does this feel like?
The fatigue itself feels like a state of perpetual heaviness, it feels different from simply not sleeping for a couple of days. Like your limbs and body are bogged down with weights, and moving around is slow and laboured. This heaviness comes not just from knowing you are always being on the edge of exhaustion, but from the baggage you are carrying around.
A normal day means measuring up the weight you’re carrying from when you wake up, against what you need to accomplish that day.
Do too much too quickly, or push yourself too hard in this state and you’re likely to need to lie down and rest, writing off that particular day, or a sizeable portion of it.
The next day your body might feel lighter, or more normal, or it might feel even heavier, it is the daily or weekly shift between healthiness and tiredness that is frustrating.
Living with fatigue means planning every aspect of your life against how much energy you have for that day, and how much an activity or task will sap out of that days total.
Nothing is spared from this total. Getting ready for work, carrying items, walking a short distance. Planning or completing work, even fun things like spending time with friends. Every activity in the day is a calculation.
Ultimately living with fatigue (like living with endometriosis) means giving up a lot of the freedom to do things that other people take for granted.
How can chronic fatigue and endometriosis be managed?
There’s no cure for this weighted feeling of fatigue. Unlike a normal body you can’t eat or rest to quickly to top up or kickstart your body. You learn instead to make friends with fatigue, learning when it will cut you some slack on the good days and take the opportunities to operate more normally.
However there are no shortcuts with fatigue, and trying to do too much will set your body back days or even weeks.
The only solution is planning. Thinking about the shortest path to walk somewhere, the lightest item to carry home, the location for an event to go to that will allow you a quick journey home should you find yourself crashing and needing to rest.
On the plus side it means a life where you cut a lot of the crap out. You can’t waste time or spend too much time doing things you don’t enjoy or being places you don’t want to be. Fatigue (like endometriosis) has a way of making you realise what’s truly important in your life, giving priority to the people and aspects of your life that really matter.
The ongoing battle for a better quality of life with endometriosis is an ongoing one for many. To help yourself feel better you’ll need to make friends with fatigue and learn how to plan around it, so you can eventually back away from this debilitating side effect.