An Explanation of Myalgic Encephalomyelitis (Part 2)

2.) Neurological impairments.

My worst symptom in this category is difficulty processing information. It is frustrating and embarrassing to be confused, disoriented, mentally overloaded, and speaking slowly when a person is trying to have a conversation with me and my brain is trying to catch up and focus on where the floor is and how quickly I can sit down if I need to - or worse, trying to plan how I can excuse myself from a conversation as quickly as possible and escape. I have also been dealing with what I can only explain as an acquired but different case of dyslexia. This problem occasionally bother me when I'm reading, but mainly poses a problem from an auditory standpoint. As an example, my mom was talking about the recent Supreme Court decision which stated that the healthcare package would be considered a tax. Over and over again, I was convinced she was saying that the healthcare package would be considered attacks. In frustration, I said, "What do you mean, attacks?" Since a tax and attacks sound the same, the confusion took a while to clear up. If this does happen when I am reading, I stare blankly at the page for several minutes, wondering why someone is talking about someone winding a clock when he is obviously talking about the wind that blows through the trees... only to realise that he is talking about the wind and that wind and wind share the same spelling.

I once jokingly remarked to my little brother that I have the memory of a 70 year old women. Sometimes, it's true. I always used to tease my mom about forgetting things, but now more details slip my mind than I would care to admit. My most common problem is word retrieval - or, I am realising - name retrieval. Not so much people I see on a regular basis, but people who were on my wing at school, and I'm looking at chorale tour pictures and know that I should know who that person is but cannot remember her name.

Headaches and pain have been two symptoms I have been dealing with this week a lot. Headaches and pain don't seem very uncommon, you might say, however the headaches I have had since my mono days are unlike any headaches I have ever had before. Sometimes they are chronic - lasting for days or weeks at a time (this happened last summer for I think about three weeks). Other times they feel as if they are originating directly behind my eyes, others seem to stem from the base of my neck below my brain. My chiropractor has been able to help me reduce my headaches this spring, but now they are back again.Pain is generally limited to places in my upper back between my shoulder blades, but it can also radiate downwards into my lower back. Yesterday I had gripping, long-lasting pain in my chest. Sometimes the pain is so overwhelming that all I can think is, "Pain, pain, pain," for hours as I lie in bed, unable to think or move.

And then there are the sleep disturbances. Whether its insomnia, a penchant for multi-hour naps in the afternoon hours, inability to sleep at night, frequently awakening during the night, or unrefreshing sleep and daytime sleepiness, no part of the sleep disturbances are pleasant. My biggest complaint a few months ago was the unrefreshing sleep. I would feel exhausted when I laid down, and exhausted when I woke up, despite how long I slept. Now the insomnia and daytime sleepiness have come to the forefront again. Despite being exhausted and dragging all afternoon, when it comes bedtime, I simply cannot fall asleep. It is possible that this is a result not directly of the ME, but of fatigued adrenals and an imbalance in my body's production of a hormone called cortisol. However, I have not yet had my cortisol levels tested, so this is just a speculation. Ironically, when I am most fatigued is when I have the most difficulty sleeping and awaking feeling refreshed and energetic.

Also troubling this week in particular have been extreme sensitivities to light (manmade more than sunlight) and noises. Oftentimes vibration, odor, taste, and touch also cause sensitivities. Along with these sometimes come muscle weakness (with light and noise), twitching, poor coordination (generally), and feeling of unsteadiness while on my feet. The more tired I become, the more pronounced these sensitivities become. Recently my light sensitivities have been so drastic that in the evening I can only use my computer if the screen is on the dimmest setting and all the lights are off in my room. After about 7 or 8 when it begins to become dark at night, almost all manmade lights cause pain in my eyes or exacerbate a headache.