What ME feels like

Having ME is like living like Link on his last few hearts...

It's nearly impossible to give a clear picture of what ME looks like. It varies from case to case, especially since ME/CFS is a chronic illness diagnosis given after only a process of elimination. There is no bio-test to confirm ME/CFS, though many tests can give proof of abnormalities in multiple body systems. For me, it started with a mono-like virus that never went away. Imagine having mono for 10 years. That's my life. I've made some daily-manageable improvements with nutrition, psychology, and gentle yoga mostly with The Optimum Health Clinic, but have not found full recovery, most likely due to the crazy way my life has unfolded over the last decade in order to just maintain a life.  I've had brief remissions in the last couple of years, the longest being a few months last summer, where I was not feeling ill but still could not go past my "energy envelope" without experiencing severe consequences.

  I've also gone through an intense "spiritual" journey that may be more psychological than religious, but certainly transformational as many who experience life-changing circumstances to do. I've had to question my role in society, my personal labels of identification, and my entire purpose in life and finding meaning to go on.

Hopefully some of these images can give a little visual idea of the experience of ME/CFS.
I've also found The Spoon Theory very helpful for friends and family.

Extreme exhaustion, unrefreshed by any sleep/vacation/break from the world. This causes brain fog, vocabulary and memory retrieval dysfunctions, and trouble concentrating (remember when you stayed up for 2 days trying to finish your paper? Remember how dumb and tired you were and you couldn't function? Try that for long periods of time..)
Regular work that requires minimal mental or physical exertion becomes nearly impossible.
My nerves were on fire when I first got ill. Any small start made me feel like I was being electrocuted. Even now if I'm more worn out than usual, my physical anxiety responses are hugely exaggerated. This is not a psychological symptom, it is a physical nervous systemic symptom.  Problems with adrenaline, cortisol, and the stress response in the amygdala are partly to blame for this.
You feel like you've been "un-plugged", like the circuits have shorted, like your batteries have died. For 3 years I couldn't stand to take a shower, and had to sit to brush my teeth.
After a couple years you start to realize your life plans have to change.  Good-bye life experience and credentials....
Because ME/CFS is so misunderstood, it's common to lose a lot of the people in your life. Some for the better, but it can be so hard to let the people you know what it is you're going through and how to help.
So in addition to learning how to cope with your body that doesn't do what it used to, you often have to get psychological help to simply deal with the stress of being chronically ill and all that it means for your life.  Plus most doctors will recommend therapy anyway because they still think it's a psychological illness. It's not.
Over time you learn through all your inner work to face your fears and "Invite your Monsters to Tea", bravely exploring the dark parts of yourself in order to find the light.

You learn that your healing is a priority, and your needs come first. Allowing yourself to "Rest" can be one of the most difficult inner lessons to learn.
Work can still be really hard on good days, but I find ways to manage time and energy and do what needs to be done.

Some days just getting out of bed will be your only win. Some days ALMOST getting out of bed will be your only win.
You'll do a lot of "healing body" meditations and visualizations. It's important to get in touch with a better feeling self, even if it is imaginary.

One thing I miss the most is exercise. I was an athlete before I got ill, surfing, weight lifting, swimming, running, but now my muscles have an extremely limited capacity and I suffer symptoms of "post exertion malaise" which means my muscles continue to burn long after the exercise and I'm weak and unstable for a week after slight exertion. (A healthy person should walk 10,000 steps a day, if I go beyond 4,000 I usually have to pay for it for a few days. Forget weight lifting, which was my first prescription from a doctor.)

Some days all I can do is just hold on.

You get poked and prodded a lot. I was tested for HIV every 6 months because my Infectious Disease Specialist said I had symptoms of a late-stage AIDS patient.
I thankfully have not had too many hospital visits, but insignificant things can send your immune system into overdrive.

What my drawing looks like on a good day
What my drawing looks like on a bad day.

The floor becomes a natural place of rest.  I once had to cancel a class I was leading because I literally could not lift myself from the floor. And I felt guilty. Don't feel guilty. Ask for help, if you can. If not, be very very very kind to yourself.
Yoga (GENTLE yoga) is super helpful. You know, while you're on the floor anyway.

You have to find a way to temper your moods. Or breathe through them. You know how grumpy you get when you're tired? Now are you surprised that someone who is chronically tired is grumpy?  Learning how to find a better inner feeling place when your body hurts is hard, but very helpful. Be kind to the grumpy people. They're probably really hurting.

Some days you are so tired you cannot do basic things. Eating hurts. Lifting your fork hurts. Going to the bathroom is too exhausting. Cleaning yourself seems like a luxury. I usually have to explain to those closest to me that a normal person's "getting ready for the day" is about 50% of my whole day energy allowance.
Sick days are the norm. I'm better than I used to be but it's typical that the immune system of a patient with ME/CFS is completely dysfunctional. I have regular fevers and catch every bug going around.

Through it all I've developed a huge sense of compassion for the suffering of my fellow humans.  I've found beauty in the small moments, and meaning in just being.  The gift of my chronic illness has been the tearing away of some of the "rules" I understood the world to follow, and have found a way to make life enjoyable and liveable and successful in spite of my physical limitations.

If you found this post helpful - Please consider donating to my JustGiving cause for The Optimum Health Clinic - a global clinic that works with patients with ME/CFS to have a higher quality of life.

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  1. Thank you Jenny, for the courage, care and compassion to post this. You have articulated so well, the struggle sufferers of CFS/M.E. have in endeavoring to cope with the illness. Although I would judge from your article that I am perhaps in slightly better shape than you physically, I certainly don't have the cognitive ability to articulate the illness in the tremendous way you have. I too miss the exercise so much and just dream of being back on the bike and being able to participate in triathlons. Empathy of a fellow sufferer is so very helpful and appreciated. Thank you and very best wishes, Tim x

    1. Hi Tim, I certainly have better days than others, and have been in a bad spell since about November, but most of last year I was feeling quite well and nearly normal, so it comes and goes depending on life circumstances sometimes. Thanks so much for the comment, I know lots of great stuff is being done with research and treatment and we'll get there :) Feel better :D

  2. Thanks Jenny for using your limited resources to post this and provide support to other people. You will indeed get there, you ARE getting there. If you're anything like me, one of the challenges is in accepting that you're not getting there as fast as you want to...i.e. NOW! But we WILL get there, slowly and with kindness to ourselves. I had said only this morning that I miss exercise the most - I'm hopeful that this is my year for enjoying cycling again... Oh, and your drawings are quite brilliant. :) Laura in sunny Pembrokeshire xx

    1. Absolutely. I went years without having a single day of feeling well, and last year most of the year I felt pretty well. My cognitive functioning is hugely better and I am recovering from the bugs faster too. Improvements have absolutely been made. Feel better always, Laura! Thanks for taking the time to comment!

  3. Hi I agree re how well you articulate the reality of ME....well done!Ive had severe ME since 1991and I SO get when you relate anxiety to a physiological response rather than psychological.When I'm totally exhausted that's when anxiety kicks in and as you say is related to our CNS......so well put.....exhausting people say with sleep deprivation is a device of torture and they break down just as PWME do when the tank is empty.Good luck on your continued efforts to get better.The tide is turning,as I can see 25years on!Greetings from Bonnie Scotland!

    1. Hi Maureen, I absolutely agree. Our patients have been so good at doing their own research and staying active and seen. Great things are coming. I am managing quite well and know how to do more things to get better, as my motivation will take me! I hope you feel better too <3

  4. Great and honest blog. I have been diagnosed with CFS and suffer from what I describe as brain fog. However, I hear this term a lot. How would you define it? For me it is more of a physical pressure all around and foggy thoughts. Also Tinitis white noise in my ears. Is that it?

    1. Hi James - Brain fog definitley feels like pressure and foggy thoughts - for me it leads also to dysnomia - inability to access vocabulary, words, passwords, numbers that are usually automatic to you - makes me sound really dumb sometimes! You can also call it cognitive dysfuntion - the neurons just aren't firing like they used to. Tolerance of light and noise is limited. Tinitis is also really common in ME/CFS - thankfully I have not experienced it but many of my fellows have. Thanks for commenting and as always, feel better <3


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