But that’s taboo: Chronic fatigue, my fake illness

Chronic fatigue syndrome (CFS) feels taboo to me because it is, well….weird. Because it just doesn’t seem like a real thing. There’s a certain stigma attached to it. It’s invisible (obviously). There’s no definitive test for a diagnosis. And, for me at least (because it is mild in my case) I often actually feel “fine” and present as “fine” (or more than fine even). Until I’m not. And then I’m really not fine.

It is actually still hard, even for me, to believe that this “chronic fatigue thing” exists, and that I am trapped in its world. To this day, it is extremely hard for me to comprehend what has happened, and continues to happen, to my body. Which is why I’ve taken to affectionately joking with my husband about CFS – my “fake illness”. Because it really does feel unreal.

Nearly eight years ago, a two week period of fatigue with a mild sore throat and mild fevers turned into a confirmation of glandular fever, turned into post-viral fatigue, morphed into chronic fatigue which has now finally been successfully “treated” with a six month program run through UNSW. Little is known or understood about the mechanisms of CFS , however, perhaps now with the challenges of long COVID we will see more research and resources emerging.

CFS really is very stupid. How can I explain it? The whole point of this post is to explain a little of what life with mild CFS is like, to provide a window into its effects on a day to day basis. But how can I do that? CFS is such in insipid, insidious beast. It’s a now-you-see-it, now-you-don’t kind of a thing. It’s a party-all-weekend, spend-a-week-recovering kind of thing. It’s “boom” (when everything appears “fine”), followed by “bust” (when I’m in bed for hours unable to move because moving is too exhausting).

It’s reading a book and getting a headache after 15 minutes. It’s walking with a friend feeling breathless all of a sudden at the 40 minute mark and needing to rest. It’s driving somewhere and losing concentration and having trouble keeping my eyes open after 40 minutes. It’s talking on the phone and struggling to put a sentence together after an hour.

It’s carefully planning out my morning, my afternoon, my day, my week, my month, my year so that I minimise (as much as possible) the risk of post-exertional malaise. It’s diligently (or not so diligently!) taking short breaks to recharge, up to five breaks a day. It’s saying “no” to things all the time (a very good thing to learn how to do). It’s letting go of rampant perfectionism (that’s a good thing to learn how to do too). It’s finally being serious about my own needs and not ignoring them in automatic preference of the needs of others (also a good thing). It’s my husband tirelessly taking up so many tasks, so that I can pace myself out well, or when I have over-done it and “crashed”. It’s my kids learning that I can’t always go to all their things. It’s me missing out on things. It’s me learning to work hard for balance – true balance – everyday because CFS has no respect for imbalance.

CFS is real and it’s weird and, in my case, I think it’s here to stay. I’m so grateful that it’s mild, that I’ve “only” lost 50% of my pre-glandular fever capacity. So many people have lost much more. I’m so grateful for the Fatigue Clinic at UNSW. With their wonderful expertise and support I have been able to build on and extend my limits. It took six months but I can now read for an hour before I get a headache! And I can now walk for an hour with a friend before I tire. Very slowly and very carefully, I can do more and more. CFS means learning how to genuinely respect one’s limits whether one has CFS or not (in whatever realm they may be – emotional, financial, social, sensory, or physical); how to let go of frustration and embrace ones humanity.

CFS means knowing how, learning how, to really and truly make the most of each day. When I’m planning and pacing well I have such lovely days because literally almost everything I do is thoroughly thought through and highly intentional – very little time is wasted on things that don’t matter to me – I don’t have energy to waste!

CFS has meant investing time into lower energy things, finding or rediscovering interests like knitting, drawing, writing and reading. Interests that I can control (in terms of energy), interests that I can “pace” out well. I love some of the things I’ve been able to achieve with my enforced slower-paced life.

But, CFS does mean missing out at times, it does mean nasty, complicated setbacks when the reality of life makes pacing and planning impossible. It means more last-minute bailing out of commitments than I can to think of (sorry to everyone I’ve bailed on do to fatigue – I hope you’ve not taken in personally in any way). It means grieving what sometimes feels like a loss of productivity.

Today, CFS means trying something new in the morning (a five minute light cardio workout) followed by an hour or so of knitting and then experiencing post-exertional malaise this afternoon (aching joints in my hands, headache and four plus hours listening to podcasts and resting in bed to recover).

CFS, I’d love it if you weren’t there, but I’m slowly learning many things that I would never have learned if it didn’t show up in my life all those years ago. And that’s fine by me (mostly!).

“I will instruct you and teach you in the way you should go;

I will counsel you with my loving eye on you” Psalm 32

5 thoughts on “But that’s taboo: Chronic fatigue, my fake illness”

  1. Sorry to hear all this, but it is a worthwhile thing for me to read, and better understand. I hope (and pray) that improvement will continue as far as possible.

  2. It weird because I have this as well. Every winter when I was a teen I’d be unable to get up and just sleep. They told my mom it was mono, but didn’t test until the third year in a row. It wasn’t. I took protein powder all winter to help with it. Sometimes I think it was seasonal depression, it sometimes I’m just so deeply tired for very little reason that I think it can’t be. I’ve never heard of a fatigue clinic. That really interesting. How did they teach you build up your tolerance?

    1. The process of building up tolerance is not rocket science actually, it’s just the individual application of the principles that can be tricky, I think. In the program I saw an exercise physiologist and a psychologist. The exercise physiologist helped with physical “pacing” i.e. pacing out physical tasks (e.g. grocery shopping, cleaning, exercise) so that you don’t use up all your energy on one thing all at once, then crash afterwards (otherwise known as the “boom/bust cycle” with which I am VERY familiar with and quite the expert at, if I don’t say so myself!). They helped me to space out physically demanding activities across the day, and across the week so that I have enough energy for everything. They also taught me the principles of proper rest so that after something physically demanding I can let my body properly recover before I do something else. Basically all this takes heaps of forward planning and disciple, two things I struggle with! The psychologist helped with cognitive tasks, so giving guidance on how to pace out things like reading, conversations, driving, computer based tasks etc So, for example, with either task (physical or cognitive) you work out your current threshold (e.g 30 min for walking before feeling muscle weakness/shortness of breath OR 15 min of reading before headache/loss of focus/brain fog), maintain that threshold for two weeks, then increase that threshold by either 10/15/20% and see how you go. If you find there is no “crash” or payback from the increase, then you can increase again the next fortnight. But you can only increase ONE thing at a time, so its very slo and takes oodles of patience. The psychologist was good with coaching regarding patience and she was great with identifying and working on unhelpful patterns like people pleasing, always putting my own needs last, perfectionism, difficulty saying “no” and asking for help etc

  3. I, too, developed CFS nearly eight years ago, through from a lung infection (fungal and bacterial). It took six years for doctors to admit it wasn’t all in my head. I love your attitude of acceptance, and I’ve found myself sharing the same sentiments. I wouldn’t choose it for myself (or anyone), but I’ve learned some lessons and how to be gentler with myself.

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