Chronic Fatigue Syndrome–A Teacher I Resisted

chronic-fatigue-basics-1Life has taught me that struggles are often presented to us with valuable lessons, like jewels to be mined. We have to briefly let of the fight to escape the difficulty and pain of the struggle, stop looking for a way out, and look for the lessons or we may never see them.

I have never wanted to accept that I have Chronic Fatigue Syndrome. When it was first mentioned by a doctor in the late 80’s , I thought he was mistaken and was a quack. I didn’t think it was real. I knew something very real was going on with me. I didn’t know anyone who believed CFS was real back then. I had had enough of being thought of as a faker, a hypochondriac. I felt I needed justification for the intense level of rest and sleep I needed, for the days I could not leave the bed, for the constant sore throats and body aches, the brain fog and states of confusion. I needed to be believed.

I would rest and sleep for days on end, often recovering just enough strength to fulfill a longing to re-enter life again. I wanted to be outside! I wanted to be with friends! To be active! But I would run myself into exhaustion in a short period and be flat on my back again feeling like I was coming down with the flu, needing to sleep constantly for days. This cycle led to depression pretty fast. Feeling like no one believed me made that worse.

The way doctors diagnose CFS and fibromyalgia is to spend years ruling out every other possible cause for your illness, aches and exhaustion. Finding nothing conclusive, they settle on CFS and/or fibromyalgia. I have both. There is really nothing to be done for CFS, as far a modern medicine is concerned, except to pace yourself and rest. This combined with the fact that most of the medical community and the general public didn’t even accept CFS as a true illness when I was diagnosed made it a disheartening thing to hear. I did not accept it.

But it’s true. I got Epstein-Barr, or mononucleosis when I was 14 and my health has not been the same since. It was like something switched in my system at that point. Like my system and that virus really didn’t get along well at all! Epstein-Barr is highly associated with Chronic Fatigue Syndrome, though no one knows why, and it’s not in all cases. In my case, the virus has become active again a few other times in my life, which rarely happens.

I am now trying to see the things I can learn from CFS. I can learn to release shame and guilt. The shame I feel attached to others not accepting me for who I am and what I can do as well as what I can’t. The guilt of having to say no when I can’t do plan to do something or go somewhere because I know it’s just not best for me. The shame I feel for not being able to just “get over it”.

I can learn to slow down. If I want to stand a chance of feeling the best I can from one day to the next, I have to go at a mellow pace. I have to do one thing at a time. No multi-tasking. Mindfulness is key when being able to clear brain fog and concentrate at all is difficult. Rushing only exhausts further and eliminates any hope of fun or productivity.

I can keep learning the many things I can do to take control of my own health, in addition to going at a pace that feels right for me. Food allergies and sensitivities are a very real issue for me, and I can honor that and unapologetically eat in the way that suits my body best. I can work some gentle movement and stretching into my day, because I know I feel better and have less pain when I do that. I can sleep 9 hours a night, on a regular schedule, because I know that means less exhaustion and fewer days sick.

I can limit my time in loud and busy places, because they sap my energy. I can say “yes” when I mean yes and “no” when I mean no. I can remember that I am the only one living in my body, and I know what is right for it better than anyone else. I can still love my body and my life, even on the days I still feel lousy.

I can release the need to live up to others standards. Really hard one. I hate disappointing people. Maybe the key is to release my own inner demon that says I am being judged all the time. I can be my own worst enemy in that regard.

Generally I can learn to accept that I can’t control everything or solve everything. This may be one thing I just have to ride. Not control or find a solution for. Some things are like that. That doesn’t mean they are broken. They just are. Feels better just to write that.