A short time ago I suffered the worst patch of chronic fatigue that I have experienced for the longest while. I couldn’t have written this update when it was at it’s worst. Even lifting my head from the sofa was too much like hard work. Trying to eat with the lightest of forks felt like I was trying to lift a bag of sugar.
My limbs felt like dead weights, they shaked and flailed as I tried to perform even the simplest of movements. They trembled like they were sacks of water when I asked them to be still. Every request for my body to move left me panting.
Of all the things that I experience with endometriosis, it is the fatigue that I dread the most. For me it the worst sort of body betrayal. It makes me feel like I am trapped in my own body, weighed down by my own skin and fighting against a perpetual feeling of slipping into unconsciousness.
I have spoken at length about what endometriosis pain feels like. Today I want to talk to you about my chronic illness nightmare. The thing I dread the most. The heavy burden that is chronic fatigue.
How and why I felt bad
I spent three days feeling terrible after overdoing the dancing at a Christmas party. Just three hours of forgetting about illness, letting my careful pacing go had led to me feeling miserable for three whole days.
I didn’t regret the decision to do this at all. In fact I knew it would happen. I had scrimped and saved my energy for days beforehand to give me the briefest window of normality.
However it was still brilliant reminder of why those of us who suffer with chronic fatigue shouldn’t overdo things, and I want to use my most recent experience to explain the despair that is fatigue, to those of you who know it well, and those of you who still use the word “exhaustion” for a busy day, or a hangover, or a couple of hours of missed sleep.
The very worst sensation is a lack of control. Not knowing when this long, dark, heavy fatigue will leave you. In many ways I was extremely lucky to only have three days of exhaustion for a mere three hours of play. That’s a pretty good ratio. I’m not always so fortunate.
The downside of managing
Subsequently I’ve pondered just how I shot myself in the foot with the dancing. Not because of how poorly I felt in the days after, but because my incredibly rare instance of “living without boundaries” had made those I was with think that I was okay, or worse still that I was getting better. That perhaps this chronic illness of mine wasn’t quite as bad as I was making out.
Very few people see someone with chronic fatigue when they are at their worst. You only ever see me when I am at my best. When I am carefully navigating around the small talk of the office, or when I have won the battle with my body to make it out of the house. No one but my nearest and dearest sees me when I am pale with the labour of fatigue, my eyes the merest hint of open. Struggling to talk and to move I am so laden and tired.
When all I can manage are groans, whimpers and shaking hands. Hardly anyone else sees that. Only someone else that has experienced fatigue first hand can know what that feels like. How lost and muddled you feel, your mind racing all the while, begging your body to stay awake.
Judging my chronic illness or my fatigue simply by what you can see is a flawed model at best, like trying to estimate the size of an iceberg when most of it sits silently underwater.
What experiencing fatigue feels like
It’s incredibly difficult to explain how chronic fatigue feels to someone who has not experienced it. Particularly when others’ experience of tiredness relates to time without sleep rather than the dark depths that fatigue creates. I have never experienced drowning, but I’d equate the sensation to that. Willing your body to float as you sink helplessly deeper towards the bottom of an ocean.
By comparison I welcome the normal sort of tiredness. The tiredness that people not burdened by illness complain of. Tiredness that comes from actually using energy, from burning the candles form both ends, from missing sleep (occasionally out of choice). Tiredness that has a purpose, a reason, acts as a warning for when you need to rest. Tiredness that means something, it a result of fun had or energy spent.
I get no choice when it comes to fatigue. It is my master, and it decides how I feel, what I can do and if I will be able to work. No amount of sleep will sate it, no food, no drink. Only patience, pacing and time.
Thank you so much for this post! I was diagnosed with endo during surgery to remove an ectopic pregnancy about 3 years ago. I had no idea what endo was and what that meant for me. Recently I have been experiencing an increase in pain so I was googling treatments and things and saw your post on fatigue. I had no idea this was a side effect. I thought I was just going crazy! This post, and others I have been reading are really helping me to grip my illness and not make me feel alone and like its all in my head. Thank you so much!
You’re so welcome Sarah, I hope you get some relief from your pain soon.
I found this tonight as I’m sprawled out on my couch so suddenly exhausted and weak. I’m an endo sister as well. I needed to know I wasn’t alone in this. When this exhaustion hits, it’s quite debilitating and scary. I was diagnosed in April, had to stop bc in July and have been trying to conceive ever since. Now it’s December and my cysts are back with a vengeance as well as flare ups. I love getting back on my feet after these awful hours or days of weakness. Thank you for writing this! I don’t feel alone or crazy. I’m reminded that millions of us fight through this daily. ❤
Really happy to hear you’ve taken some comfort from my words – I’ll be publishing an update on working with chronic fatigue later today that you might find useful. It’s intended for people who have to work with fatigue, but you may find it useful for day to day life too 🙂
Thank you, thank you, thank you for this post. I am so grateful to have coma across it. Reading your words, I felt as though you could see inside MY life. It is so rare, and so unexpected, to come across a person who is so intimately acquainted with ALL of the horrible and debilitating things that have taken over MY life, as well.
Like you, I am an Endometriosis sufferer. I have experienced symptoms since approximately 2002, but was not referred by my G.P. to a Gynaecologist until 2006. Now, you might think that THIS was a breakthrough… No! THERE began YEARS of misery. My Gynaecologist was rude, unsupportive, dismissive and, frankly, offensive. He made some of the biggest bungles ever, misdiagnosing me with Polycystic Ovaries, and then failing to treat even THAT for nearly FIVE years! To add insult to injury, he casually “brushed off” my symptoms as though I was inventing them, writing in my notes that he thought I was failing to conceive because of “anxiety”! Can you believe it? ANXIETY… the one thing in my life making me anxious was HIS complete FAILURE to make an accurate diagnosis!
After a second opinion (which I had to fight tooth and nail to get) I was diagnosed with Endometriosis in 2011. I have since had three laparoscopic surgeries to try to “manage” the illness (don’t know what other word to use, as it seems to be utterly unmanageable – cure is not the correct word, as a cure seems utterly evasive). I am due to have another surgery in March, this year.
I never feel quite like I get the full truth from my surgeon as to where my Endometriosis has spread. I know it was removed from my utero-sacral ligaments and pouch of douglas (I’m no anatomist, so to me, this remains a mystery!). It is possible that the Endo is also on, or around, my bladder and bowel…
To add insult to injury, I also have a diagnosis of Post Viral Fatigue Syndrome, made in 2006. This only came to light fairly recently, when I asked to view my medical records… otherwise, I would never have been aware that it WAS diagnosed at all. I have NEVER been treated, or seen by anyone specialising in such illnesses. I have just been left to cope alone.
And what do I cope with? Well, pain, of course, from my Endometriosis. Almost constant pelvic and lower back pain. All the usual unpleasant menstrual issues… heavy and irregular periods, bloating, stomach cramps. I also suffer from nausea and an upset stomach around the time of my periods. To top that, I get anaemic, and suffer frequent infections… And then comes the “icing on the cake” – fatigue.
Do you know what upsets and offends me most? People who dismiss Endometriosis and chronic fatigue as “trivial”. People who think that because you do not look obviously “ill”, you cannot be ill. People who assume that you are “making it all up”, “malingering”, a “hypochondriac”; or worse, “nuts”! People who talk about your symptoms as though it is just regular “period pain” and feeling occasionally tired and a bit achy. IT IS SO NOT!
Before my diagnoses, I was slim and highly active. I enjoyed hill-walking, canoeing, aerobics, yoga and horse-riding. I was a busy Social Worker, with a husband, and pets. I was occupied in renovating an old house that hubby and I had bought, intending it to be our family home. I was planning to return part time to Postgraduate Study.
Now… on a good day I am able to drag myself into University to complete my Postgraduate Psychology course. However, my desire to continue part-time work came to an abrupt end with THREE surgeries (noted above). Unlike my University Tutors, my employers were extremely unsympathetic and offered NO support whatsoever. They made it clear to me that illness, and medical appointments, and pain, and fatigue, and medical treatment were ALL huge INCONVENIENCES to them. I should either battle on alone (and quietly) making no mention of my problems to them, or I could leave my job!
On a bad day… I simply wish and wish that somebody could remove my brain, and place it in a fully healthy body!
Endometriosis and chronic fatigue are NO JOKE. It saddens me that some people are so lacking in empathy and understanding. I suppose that is the problem. Some people simply cannot get their heads around things that are not blatantly obvious!
All I can say to you is this… Good on you for speaking out about what you are experiencing. Good on you for trying to get the message out there, and trying to educate people. Always remember that you did NOTHING to deserve the rotten deal that life handed you in the form of Endo and fatigue. Always remember that you are intensely strong, and a survivor, to cope daily with such things, and to try to live your life to the full. Always remember that there are people out there who, if THEY had to cope with such things, would fall at the first hurdle. When insensitive people get you down, or when your symptoms are really bad, keep telling yourself that you have come this far, you are a fighter, you are determined… YOU have coped with things that are difficult to cope with, and have come out the other side. YOU can do it again.
I wish you all the best.
P.s. I blog about MY experiences. My website is “A Butterfly Mind” at 19911324335657460.weebly.com and you could also look up my Endo posts on Facebook at http://www.facebook.com/elaine.ellis.5494360
Thanks again for your insight.
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Thank you for writing this. It explains how I feel during the worst fatigued times. Just recently a family member who is a medical doctor was verbally angry with me saying that I could relate to her being tired. She has a newborn and a career. I have Severe Endo with all of the bells and whistles. I said, ” I know it’s not the same situation but I can relate with the exhaustion.” The response was full of anger saying I have no time for other people saying they are tired when they have poor sleep habits and could take sleeping pills to sleep. Other hurtful words were said but it astonished me as to how many doctors really have no idea of the severity of this disease and it’s comorbidities. Plus the lack of empathy and compassion also floored me. Being looked at as tho u are exaggerating or just not trying hard enough is incredibly hurtful and demeaning.
So reading how you felt after dancing helped me feel validated and understood. Even if it isn’t in my family circle. I hope and pray that some day they will learn and come around. Sometimes I feel that the pain of being misunderstood and looked down upon is just as great as our severe pain that can and does debilitate us at times.
Thank you so much for sharing. 💛😊