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.|
|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.|
|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.|
|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.|
|Yoga (GENTLE yoga) is super helpful. You know, while you're on the floor anyway.|
|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.|