About six years ago, I was lying in bed when I became aware that I would become ill. I did not hear a voice, I just suddenly yet gently became aware that this would happen. I told no one. I was at the height of my physical health with no symptoms of illness. I was practicing yoga, working out with the elliptical machine at the gym, and running in my neighborhood on a regular basis. I ate a vegetarian diet. Later that year I was diagnosed with Multiple Sclerosis and, six months later, SLE Lupus as well.
I remember when I first noticed the fatigue. I have a mental picture of the exact moment I reached the top of a very familiar short flight of about 10 stairs, and had to stop to catch my breath because suddenly I was exhausted, winded, and I didn’t know why. There was another time I remember remaining seated at my desk for an extra half hour after my shift was over because I was too tired to walk to my car. The fatigue affects everything – my muscles, my breathing, and my cognition. I cannot get over the feeling that I have been taken out of the game too early.
I have lesions in my brain. They are maybe a centimeter wide, oval or circles maybe? They are places where the nerves have died… little specks of brain damage. On an MRI they look like pinholes in my brain. I also have one in my cervical spine – right behind my neck and another one in my lumbar spine.
My symptoms are invisible but moderate to severe in their intensity…mostly pain, chronic fatigue, and some cognitive difficulties. Humidity, heat, cold weather and stress aggravate all of these symptoms. On rare days, when the weather is a perfect 75 degrees with very low humidity I feel fantastic. The symptoms do ebb and flow but mostly they are here; achy joints, heat intolerance, migraines, back pain, etc. The worst part is the isolation – chronic fatigue’s silent companion.
My fatigued body feels thick inside like my blood weighs more than it did when I was healthy. It fills up my joints, slips between my bones … expanding to a thickness that seems to stop the flow altogether, leaving me feeling stiff. Fatigue fills up arms and they become so heavy and weak; holding them above my head depletes an absurd amount of energy. My shins/calves can feel just as heavy. Walking outside in the humidity is very uncomfortable. It takes more energy to move these heavy limbs. To state it simply, on bad days, it has become difficult just moving around.
Exercising is the best thing for my health, but most days my energy is depleted just by tidying up the home, doing some laundry. I try to squeeze in a 15 or 20 minute yoga practice. I remember days when I hit the gym before work, did paralegal work for 8 hours, went food shopping after work, came home and vacuumed my apartment. This is not plausible today. It would be overexertion and take extra time to recover --- most likely spending the next week or two mostly on the couch. I am fairly certain I would not even be able to push myself to complete those tasks today.
Fatigue has already cost me a few years of missed social gatherings, family birthday parties. I need to plan my time carefully and cautiously now when I leave my home. If I am going out for a “big day,” (for example, traveling by car 3 hours round-trip to spend a few more hours visiting with my family) I need to spend a day or two before and following the visit “resting” because the journey depletes my energy which is slow to recover. Despite careful planning, often I overexert myself just by sitting in the car, with the sun beating on me through the windshield, interacting with family.
Fatigue effects cognition, but because of this very symptom…fatigued thought processing, I am usually unaware that it is happening. It is only after the episode is over that I reflect on it and realize the fatigue negatively impacted my interpersonal communication. On most occasions the fatigue comes out of nowhere and hits me like a brick wall so that suddenly I feel as though I’ve been unplugged and just cannot go any further – it has happened in food stores, shopping malls, work, during a conversation. To go on vacation or to babysit my nieces I have to take a steroid. I have felt at the mercy of something I cannot control for what feels like so long now; but I know my journey is only beginning. I still have half a lifetime to go.
I fear the mental fatigue most. The way it slips into every nook and cranny of my daily existence. Just being in a crowded room exhausts me. My mind gets tired of processing information, but I am not really aware that this is happening. At social gatherings, which I so enjoyed at one time, I don’t bother introducing myself to anyone new for fear that I may slip into a “cog fog”, short for cognitive fog, a term used to refer to the cognitive confusion/mental fatigue experienced by lupus patients.
These are the symptoms I never expected – profound fatigue and social isolation. Social isolation even at the party – my fatigued personality is half asleep and I am locked inside myself. I spend so much time alone now that I have fallen out of the practice of socializing, and I’m not even sure what to talk about. I am the listener in the room now.
Can someone teach me to dance in the loneliness? Teach me how to transition from being very socially connected to having no social plans in sight? Having few visitors… no intellectual stimuli…. How do I get over the feeling that I have been forgotten? It makes me want to scream at people,
“Don’t you understand that I may not be the same person the next time I see you? I may not be able to go with you then…the time is now. I have less of it, I believe that. All these moments that seem so important to you all… the things you have to do… you just don’t understand how precious life is, how little time we have. I don’t have the luxury of living like my life will last and I will always be able to enjoy it – or believing that scenario exists anymore. Most people aren’t that lucky….”
I feel like I have been put on the sidelines too early. I am an outgoing young woman at a social gathering yet I remain quiet because literally I do not have the energy to hold a conversation, nor do I have the energy to get up and leave. The fatigue is paralyzing. I miss social interaction. I miss the things I can no longer do – dancing is complicated because I get winded so quickly that it is embarrassing and not worth the effort anymore. I miss enjoying cool, humid summer evenings. I miss living with the windows open. I miss my independence.