This post is for my fellow sufferers of chronic illness. I thought that some of you might need to hear this.
IT'S NOT YOUR FAULT YOU'RE SICK!
You are not a failure for not having “cured yourself”.
I am saying this from the perspective of someone who was disgustingly healthy prior to getting sick. (A doctor once said those words to me when I went for a bus license medical). But I imagine it might be harder not to blame yourself if you have a messier background than I do, especially one that involves mental health challenges, or even just a life of working and partying hard and not really looking after your body, like most people do when they are young. Feelings of inadequacy about not being able to “cure yourself” can also be triggered when you are given unsolicited health advice from friends or strangers*, or if you have been reading too much stuff by predatory ‘wellness’ businesses who want to sell you some overpriced ‘cure’. **
I think that a lot of people can’t deal with the fact that they also live in highly vulnerable bodies, and it’s basically just highly tenuous luck that they themselves are still healthy. Recently I have been triggered by the cavalier attitude with which some acquaintances have been treating covid and their post-covid fatigue. I have been repeating myself like a broken record on social media “Don’t push yourself! I was as healthy as you beforehand. I never thought something like this would happen to me. A post viral illness caused the end of my world as I knew it”. But, they either must not believe the extent of my disability, not believe it will happen to them. This can hurt, as it may reveal that they consciously or subconsciously feel superior to me - that what happened to me couldn’t happen to them. That I must’ve done something wrong, or be inferior in some way. But I used to have blissfully ignorant health arrogance too. And humans just don't seem to be very good with inconvenient truths.
Prior to getting sick, of course I wasn’t 100% perfectly healthy and wholesome. But I’d say I was above average. For example:
I exercised heartily every day, not because I had an exercise addiction and toxic body image issues, but because I genuinely enjoyed it.
I wasn’t athlete-level fit or anything, but I had A LOT of energy - I used to ride my pushbike up Lynton ave (the steepest street in my home town of Hobart - a city of many steep streets)
I slept well
I only drank alcohol rarely and in moderation.
I never smoked or took other drugs. (I was a daggy bushwalker, not a party animal.)
I ate lots of (often organic) wholegrains, vegetables and pulses and never ate fast food as an adult. (I was a vegetarian for a couple of years in my early 20s, but never a vegan.)
I grew up, and still live, in Tasmania where we have some of the cleanest air and water in the world.
I had a healthy and non-traumatic childhood. (I get that some people think we’re all traumatised just from living in this society and of course I have my quirks, weirdy bits, hurts and vulnerabilities, but also, I am a cisgendered, heterosexual, neurotypical, white woman without any mental health issues, who grew up in a loving, middleclass family and until me/cfs, had no major difficulties in my life. So beat that for privilege and ease)
As an adult I led a low-toxic-chemical life. I never wore make up or perfume, I hated stinky cleaning products, I didn’t even wear deodorant for many years (I was a dirty, smelly hippy who worked in the bush as a guide and ranger most of my working life.). Basically the only products I use are toothpaste and scentless soap, and nowadays some hippy-deodorant.
I have no family history of ME/CFS or anything similar. There is no inbreeding in my family, I was born ‘naturally’ and breastfed. I was probably allowed to eat dirt as a baby. I was not a sickly child. I got colds and flus like a normal person. I only went to hospital a couple of times, once to extract a broken sewing needle from my foot, and twice for broken bones (I jumped off a swing at 8, and I rode my bike into a post at 15).
I’ve always had a generally pretty happy “positive” disposition. I have a healthy skepticism though, and am not a fan of magical thinking, nor “toxic positivity”.
But, at age 33, I still got really, debilitatingly sick with ME/CFS.
I’ve had SO many blood tests to try to find out why. I’m not deficient in anything. There is nothing abnormal in my tests, except glandular fever which isn’t even unusual, as most of the population is exposed to the Epstein-Barr virus at some point. In fact, according to a fancy blood test algorithm calculator tool that one of my doctors used, I’m over 80% healthy. (Hahahaha - yep, me who hasn’t been able to do aerobic exercise for over 6 years without being bedbound for weeks to months afterwards, and gets jealous of how much energy the old people have on the tv show “old people’s home for 4 year olds"!).
I have tried a whole bunch of things to get better. None of them have made any noticeable difference. Some of them I have not seen any logic to, but I’ve tried them anyway, because I’m a desperate sick person, or some of them were free or gifted by friends.
SO MANY SUPPLEMENTS. Thousands of dollars of supplements ( I am ashamed to admit). (Zinc, iron, b12 injections, all the B vitamins, Vitamin C, Vitamin D, fish oil, NAC, Calcium, CoQ10, Magnesium, “Adrenal formula”, black cumin seeds, Lysine, oregano oil, PEA, curcumin, shilajat, anything I read about on any cfs blog).
Various ‘detoxing’ practices such as epsom salt baths, saunas (thanks to the previous owners, we have one under our house!), dry brushing, and taking charcoal and clay pills.
Because some hippies think electromagnetic fields (EMFs) are a thing, I “earth” myself every day (by touching the ground), and turn off the wifi at night. I even tried a grounding mat on my bed. I don’t have any major electrical things near where I sleep and I’ve never been good at remembering to carry my mobile phone around.
I have seen a psychologist, and done two courses of cognitive behavioral therapy (CBT) (one for cfs and one for endometriosis).
Acupuncture and Traditional Chinese Medicine (a bit here and there early on, then a dedicated 8 months last year)
Shiatsu, float tank, reiki, reflexology.
Jumping in painfully freezing cold water and hyperventilating like Wim Hoff.
Paleo diet, keto diet, low histamine diets, diets diets diets, bla, bla, bla.
To try and target my endometriosis (a coexisting inflammatory condition), I have tried yet more expensive supplements recommended by a naturopath, pelvic physiotherapy, special stretches and CBT. I have tried going on and off the pill, which I use to manage severe endometriosis pain, to see if that affected the cfs.
Homeopathic antiviral woowoo drops from 2 different practitioners
POO TRANSPLANT! Yes I have actually tried a poo transplant. A friend generously offered his special shit, after having significant success treating his wife’s long-standing mental health issues with FMT. (We used the blender method. It was gross).
Two different medications for POTS (postural orthostatic tachycardia) prescribed by a cardiologist - florinef and midodrine. Florinef means your kidneys retain more sodium and your blood pressure increases. Midodrine is a vasoconstrictor that increases your blood pressure. Also, electrolytes to raise my blood pressure.
Mestinon - a medication for a different disease (myasthenia gravis), that I read a couple of anecdotes on the internet about helping with cfs. (I judged this to be a low risk experiment, and my doctor agreed, but its possible taking this drug contributed to my big crash in 2020. It correlated anyway).
Buying an expensive HEPA vacuume, in case there was an unknown pollutant in my house (e.g. mould) making me sick. I also spent over $400 getting a mould test on my house, which didn’t reveal anything too bad, and have done a few blood tests, none of which are strongly indicative of a mould problem. (Mould, however, is a massive can of worms that I have barely scratched the surface of, due to the expense of international testing, and that the cure is to go live in a tent in the desert)
Drinking only filtered water for the past 3 years.
Dark green smoothies made from garden weeds (and kale)
Four extremely woo-woo extremo-practitioners. (One said I was allergic to my wristband step counter and gave me some other tone-deaf advice like I should go to the beach more. Another one said someone has been very angry at me. Another “charged” some water with vibrations using a special machine connected to a computer that was connected to a device I put my hand on. Another told me she intuited that I actually knew what was making me sick, implying I was just in denial or something. Ugh.)
Had vitamin c infused into my veins! Twice! This was very expensive (over $200 a pop). (It’s supposed to be antiviral and was recommended by my integrative doctor.)
Various gut healing and parasite killing protocols. (More diets. Diets diets diets bla bla bla).
Dynamic Neural Retraining System. (Similar programs include Gupta program and the Lightning process). These are based on a rather dodgy theory of me/cfs, and basically you repeatedly tell your autonomic nervous system to stop being sick and get well.
Red light therapy (a friend lent me a machine)
Craniosacral therapy (this unproven practice felt good at the time, and usually made me very wiped out after a session. I continued with treatments as I actually felt something, but gave up when there was no long term improvement.
Listened to SO many podcasts and read all the books in the library about recovering from me/cfs and other autoimmune conditions, and took copious notes, and thought wistfully “If only I could go see this practitioner in that country who seems to talk so confidently about curing me/cfs”. (Often ordered the supplements they mentioned, then got overwhelmed when they actually arrived and put them under the bed.)
16:8 fasting
Yoga, everyday
Meditation everyday. (I even think about my chakras while meditating sometimes. It’s nice).
Practicing sleep hygiene (this doesn't mean clean pjamas, it means putting down my screen at 9pm, and going to bed at the same time every night).
Herbal sleeping pills when I’ve overdone it and I’m too wired to sleep.
Time in nature as much as possible
Slow breathing practices
Eating organic kale and blueberries everyday. And a mostly plant-based, low carb, unprocessed diet, with a small amount of wallaby, chicken, eggs and cheese. Gluten-minimum and dairy-minimum. Lots of raw salads in summer, and warm cooked food in winter. (This is a diet that helps me have stable blood sugar, that I can sustain, feel satisfied on, enjoy, digest, and has enough nutrients - which I know because I've done a lot of pedantic diet tracking via an app)
Swims in nice cool water in summer
Low dose naltrexone. (I’m pretty sure this helped clear up my brain fog when I started it in 2018. I have no idea if it’s still doing anything.)
Lots of practices that calm down my nervous system that is overactive and gets very easily stressed these days (imaginary qigong, yoga nidra, tapping).
Naps, every fucking day.
Extremely cautious, boring and slow pacing of all my activities and constant vigilance of my body’s subtle signs that tell me I've done too much. (Using a heart rate monitor helped)
Of course, none of the things I have tried, I have done ENOUGH. Yeah I tried the paleo diet, but did I try it for long enough? Did I drink enough bone broth? Was it organic enough? Did I not buy the expensive-enough supplements? Should I have continued to take the woowoo drops instead of being a close minded skeptical person? Was I this close to a breakthrough when I pulled the pin on the TCM experiment after 8 months last year? Didn't I know you have to do at least six FMTs before you notice a difference? Also, I have not tried butthole sunning, or a coffee enema or anything with crystals.
Huh. A friend who is a nurse told me about a grumpy, pessimistic patient who got better despite himself. He wished he could die, but his body didn’t let him. My body is the opposite. I mean, I’m sure the poor thing is doing its best. It’s just something has gone seriously glitchy. I have no idea why. It’s got to be epigenetic. It might be partly due something in the modern world, like a pollutant or toxin. There are several theories, and a good chance that me/cfs will be classified as an autoimmune disorder some time in the future. (I really do not want anyone I know to get long covid, but the more people who do, the better chance we finally get some research into long lasting post viral illnesses).
If you get sick yourself, I wouldn’t tell you not to try the things I have listed above, even if most haven’t worked for me. Everybody is different, and what doesn’t work for some, does work for others. But, you know what? You don’t have to! You do not have to keep trying expensive, unproven things to prove to society that you are trying your best not to be a sick loser. You don’t have to turn yourself into a pharmacological experiment. (You could do more harm than good). You especially do not have to try anything if you are under financial stress and can barely afford housing or food. Sure, some of the free treatments are worth a try - how else are we supposed to fill out time with CFS other than recreational supplement scoffing and special occasion poo transplants? (Bumhole sunning even looks like a very pleasant pastime, if you are lucky enough to have a private location and don't get sunburnt.) And who knows, maybe your fatigue isn't actually due to me/cfs, maybe you are just gluten intolerant and/or overstressed. So, definitely try going gluten-free, meditation and quitting things that make you stressed. But, you don’t have to do anything else.
I am pretty burned out by trying all those things. (Especially stupid boring diets!). It is really hard to do experiments on yourself, as there are too many variables in day to day life. Myself and a friend often joke about our CFS ups and downs being caused by the position of Jupiter. I think that some people just get better naturally, then attribute it to whatever woowoo treatment they were doing at the time. (Maybe the woowoo helped them relax enough to recover). Maybe they didn’t have real cfs. It’s gonna be hard to tell until we have a widely available diagnostic test. There are millions of people with me/cfs around the world experimenting on themselves, plus increasing investment in actual research due to long covid. I’m sure I’ll hear about it if something actually reliably works.
So, please don’t feel personally inadequate for getting sick and not recovering. If you’re gonna blame something, blame capitalism for making too many of us push ourselves beyond what is good for us, and for producing a plethora of dodgy environmental toxins. Blame the patriarchy for ignoring diseases that mainly affect women. Or, you could not waste your time and energy on blaming anything. Especially not yourself.
Here is a nice poem:
If you get sick, I love you
I will not tell you
You should've eaten better
Exercised more
Taken herbs
Worn a condom
Stayed Sober
Been Safer
I will not try to figure out
at what precise moment
of your particular, human carelessness
you contracted the disease.
I will not tell you it's your fault
that you were selfish
or high risk
or reckless
with this body of yours
vulnerable as mine and
just as capable
of betrayal
I will not say
well, what did you expect
it was just a matter of time
you get what you deserve
you asked for it
Because if shame was medicine
We'd all be healed by now.
I'll think about how viruses
are proteins,
looking for hosts,
and how we are animals,
alive and desperate,
warm blooded and whole,
and how we are humans,
exposed and terrified,
making up stories of
borders and boundaries,
as if we live in
self-contained units
where nothing comes in
and nothing goes out.
Honey -
if you get sick,
(when you get sick)
I will love you
I will ask what you need
to feel better
and I will do my very best
to get you that
cup of ramen
extra blanket
hbo log in
pack of spirits
grocery delivery.
And I will keep loving these bodies
yours and mine
that are always our own and
always each others,
porous and sublime,
that make way for touch
as they make way for sickness.
I will tell you that you're not alone
send you memes
and whisper your name
in soft prayers of healing
by the hot pink candle
on my window sill.
I'll send my biggest rate and grief
to the state, the stars, the forces
that abandon us,
that makes us go to work
and then pay for healthcare
and pay to survive.
*I know most is meant well.
** I believe many practitioners may truly believe in what they do, but there also many unethical businesses make money selling bullshit to desperate people.)
________________________________________________________________________________
Final note: There’s one thing I wish I didn’t do when I first had CFS, and that is push myself. But I don’t blame myself. I knew in theory that I had to rest and take it easy, I just didn’t know what that actually meant in practice. It was such a dramatic change from how I operated in my body for the prior 33 years of life when I would often push through sickness, with no major consequences, and I would exercise to get myself out of a funk.
I literally suffered from too much optimistic thinking in my first year of illness. I WANTED to go for walks so badly. I assumed I would eventually recover. I didn’t know how to read the signs of an impending crash - how a very minor ache in my glands could preclude weeks of crushing fatigue, or how surges of adrenaline and anxiety could also preclude a crash - feelings that I used to exercise to deal with. I hadn’t learned that I needed to have a nap everyday, even if I didn’t feel tired. No one gave me an operating manual for my new sick body. Post exertional malaise was a very confusing phenomenon. It was an ugly period of trial and error/ push and crash. It wasn’t until I started pacing with a heart rate monitor, a year and a half later, that I learned just how very slowly I had to go. Even then, it was such a challenge to actually go that slow, because it was so boring. But it is the best thing that I have learned to manage CFS.
