Accepting the Diagnosis

For about seven years now, I have been experiencing a host of symptoms from dizziness to debilitating fatigue. As each symptom appeared, I came up with a logical explanation for it. When the fatigue hit, I attributed it to the high stress in my life; however, when things calmed down and I was still beyond exhausted, I knew something was wrong.

Being a woman in her forties without ever having had children, I thought I had entered perimenopause.  The symptoms are similar, and even though they began in my mid thirties, I figured the lack of pregnancies was contributing to an early transition towards menopause. I have had blood tests that showed my hormone levels (and all other blood tests for everything else under the sun) were in the normal range, but I was still convinced it was hormonal.

Last August 2013, my primary physician diagnosed me with Chronic Fatigue Syndrome (CFS). The pained look on her face when she told me there is no real treatment plan for the condition was frustrating to me, because I felt like she had given up on trying to figure out what was wrong with me even though she clearly wanted to have a definitive answer. She told me to reduce my activities, stretch more often, and try gentle yoga... anything I can think of to reduce stress.

Irritated, I marched on with my perimenopause self treatment, trying hormone creams, changing my diet, reading all I could on female health and menopause. It wasn't until this past May that I finally heard and accepted the diagnosis of CFS from my gynecologist. I had gone to her certain she would see I was right about the hormones, but alas, she said the same thing as the primary physician.

Here is what CFS is like on a bad day.... Imagine you took a handful of sleeping pills upon rising in the morning, but it didn't make you fall back to sleep. No, you are awake and you have your job and a million chores to do, but now you are so tired you can barely move. You feel like you are in a coma but awake. It may even be a day off and you have fun things planned with people you love. You still feel the waking coma. You check your pulse every so often as it feels like you have died and are existing in limbo. (I have actually done this--checked my pulse as it really felt like my heart had slowed down to a complete stop).

On a good day it seems like you have been reborn and the hell has come to an end. You feverishly make plans trying to catch up on lost time, and you do as much as you physically can in one day. You laugh, you dance, you rejoice.. you are alive again.

The next day, you are back in the coma, and the coma lasts for weeks. You are depressed. You blame yourself for being weak and not being capable of caring for yourself. You feel guilty that you can't be the fun, active person you used to be, and you wonder when everyone will stop loving you and leave. You have to make a lot of calls and cancel the plans you made that one lovely day.

There are the physical symptoms: fatigue, chills and night sweats, headaches, vertigo or dizziness, mild fevers, sore throat, tender lymph nodes in the neck and armpits, muscle and joint pain, visual disturbances, allergies or sensitivities to foods, odors, chemicals, medications, or noise. And there are the other symptoms: mental confusion or trouble concentrating, depression, anxiety, and panic attacks. I have experienced all of these symptoms. Some come and go, and some stick around and vary in severity. Whenever I think I have figured out what to do to lessen the symptoms and feel better, things get worse. And they get better again. It's a "no rhyme or reason" situation.

Stress definitely makes things worse. Stress or overdoing it physically or mentally. Even if I put a lot of thought into a positive project, I can get hit with a wave of fatigue that is nearly debilitating. Learning to slow down and pace myself is the key. I am in the process of that right now, and believe me, it isn't as simple as it sounds.

I have read that some people with CFS become bedridden and can no longer function. I will not become that person. I am slowing down and learning to care for myself, but I will not be stopped. I think the ones who have been stopped (bedridden, can't work, etc.) did not listen to their body, to their spirit.There is a huge lesson here, and I am finally stopping to listen and learn.