One of the most difficult parts of having endometriosis, would be the fact that you never know what type of day you are going to have. Sometimes you wake up feeling okay and the pain is tolerable, but other days the pain is absolutely unbearable. It begins to take a toll on a person emotionally. My personality has always desired control over my life and everything in it. Accepting that I have almost no control over my body is scary, hard, and sometimes impossible.
I’ve had low iron since my late teens which I’ve always blamed my fatigue on. Funnily enough, since switching to a more plant based diet my iron levels were healthy and stable. So this got me thinking, why am I so exhausted even though on paper I’m pretty healthy? I felt like I was going mad when I would sleep a full eight hours and still be dragging my feet around struggling to stay awake. It surprised me when I started seeing more research and articles being produced stating that ‘endo-fatigue’ was a real thing! I had mixed emotions about it. Firstly, I thought, ‘thank goodness, it’s just a symptom of endometriosis!’. On the other hand I thought, ‘are you kidding me? I’ve wasted years trying to figure out what’s wrong with me and it’s just another endo problem!’
The best way to describe endo-fatigue for the way I experience it, would have to be similar to the feeling of not sleeping for three days, getting your period, and having a flu all at the same time. I struggle maintaining my body temperature, everything hurts, and my emotions are like a roller coaster. I often experience ‘brain fog’ and find myself very forgetful on days where I’m tired and I struggle remembering simple things. It can come on at any point during the day and last anywhere from a few hours to a few days. Sometimes it is associated with the pain and other times its exhaustion from a flare up of several days in pain.
Planning ahead is hard because you never know what kind of day you’ll have. The saddening part is how many people you lose along the way who get sick of you cancelling and making ‘excuses’. It got to me at first when I saw my circle of friends slowly get smaller. Now I see it that the people who are still here and accept my last minute cancellations are honestly the most incredible and loyal people. There’s also two people who, bless them, have not only accepted my ‘wearing track pants cause I’m bloated and haven’t brushed my hair so it’s in a weird looking topknot’ look, but joined me and still took me out in public. They know who they are and how much it means to me that they have stuck by me through it all.
The things I have learnt from endo-fatigue would be:
Don’t push yourself!
Make a list of the things and prioritise them. What absolutely must be done today, what can wait until tomorrow, and what can you ask help for?
No amount of napping or caffeine will help reduce your exhaustion. If anything, caffeine makes my symptoms worse.
Try to avoid emotional triggers. For example - I get bad anxiety if the supermarket is really crowded, so I plan a time where it will be quiet and wear headphones with calming music.
Don’t make yourself feel bad. My mantra on days I wake up with EF is ‘it’s not a bad life, it’s just a bad day. You can get through today, it will be better tomorrow’.
Unfortunately there is no real help for endo fatigue other than to take care of yourself and be mindful of your emotions during this time. You aren’t lazy, your body just needs rest after battling the war going on inside you. We just require a little more rest, a little more love, and a little more self care on days when EF is unbearable. Remember that you are so much stronger than you think.