So, extreme fatigue is part of most chronic illnesses, and I have found that the general population, and most doctor's have no understanding of what that means. So I am going to try and elaborate. I suffer from extreme fatigue.  Here are the symptoms, and its impact.

  • I can sleep all day, all night and all day and still wake up tired.
  • Even when I can't sleep my body is too tired to get up and get moving
  • When I fight the fatigue it hurts. My eyes ache, my head aches and turns into migraines, my bones hurt. It hurts to be touched, hurts to move, and hurts to breathe. I want to throw up, and scream and cry. I get so tired, and the pain from being tired becomes so much that I end up lying in the dark waiting and begging for sleep to come.
  • I can't lift even a newborn without my arms and body shaking.
  • I shake when I walk, and when I stand up I start to blackout, but never quite do, while never quite regaining my equilibrium. 
  • I have to plan my days. If I have work, then the day before must be a resting day. If I go somewhere, or have a busy weekend, then you can bet that I'll spend the next couple of days mainly sleeping.
  • Working out, at the extremely low impact level that I can obtain, results in a nap, and the next three days being exhausted. 
Fatigue sucks. It is almost worse than pain because it sucks the life out of things. It sucks the joy out of activities because you know for everything you do there is a consequence, a payment that must be met, or you'll just be sicker. Today I was tired. The weekend was fun. I had a blast hanging out with my family and the little kids that we all have. I enjoyed watching my son swim for the first time this summer. Then I slept. All night, all day, and all night again. Tomorrow I will probably sleep most of the day. I have tried everything from stimulants, to drugs given to people with narcolepsy, and still I must sleep. I must always pay for the activity I do. Maybe not that day, but soon. Now I can't work, or take care of my son unassisted. He is too busy, and I'm so tired. Being tired shortens your temper, and makes even little things harder to handle. It makes busy kids seem disobedient, and crazy. It makes everyone seem better than you, and it is hard to watch others so effortlessly do what I must plan to achieve. I'm tired of planning my days to account for how tired I will be later. Now my husband is suffering fatigue. Because my illness, his job, and life in general is draining. He sleeps like a log, and is tired from the moment he gets home. I would help, but my fatigue always wins.

Final word. I am not lazy, crazy, or unmotivated. I am actually extremely stubborn, and like people, activities, and children. I love playing with children, working with children, and generally running around being busy. Normally I would have full days, and do hundreds of things. I have tried everything, and will continue to get up and move around, if only to keep my joints limber. It isn't easy, but it is important. Next time a doctor tells me I am just stressed though, and I might go postal. How can I be stressed when all I do is sleep all the time?

Dear reader, please try to understand and consider my kindly.

Today I was asked what I'm up to by relatives who haven't seen me in a while. I have nothing to tell them. I lie in bed all day either sleeping or reading. Someone else takes care of Benjamin, and my sweet husband takes care of everything else. I also have no plans where this will change. I feel quite useless, and mourn the life I had even though it wasn't the life I wanted.

Five weeks ago I talked to a doctor about weird episodes I was having when I woke up in the morning, and sometimes at night. He thought they were seizures. A couple weeks later I had my ovaries removed because they had moved and become quite painful in nature. A week after that I was hospitalized because I had such blurry vision that even opening my eyes in a lighted room made me horrifically sick. I was kept while they looked for a cause, but when none was found, I was sent home. Now I spend most of my day in a darkened room, and my nights I spend reading, because night is always worse.

Doctor's can't tell me what is wrong. In the hospital I was told I have seizures or atypical migraines. My neurologist is at a loss and has referred me to UCLA for more comprehensive analysis or whatever. Many of my doctor's suspect multiple sclerosis or another rare disorder. My insurance won't cover it unless I get yet another opinion. So next week I see another neurologist for more tests. I have been poked and prodded for ten years. My head aches, my muscles hurt, my eyes have black spots that aren't physical in nature. I get dizzy, and sick. My hands shake, and both my hands and feet go numb or tingle frequently. I have memory issues. I try to say words and nonsense comes out. Sometimes it is better, but I always end my days wondering if I am going to die, or if I will live this way for the rest of my life.

How does one gracefully handle overwhelming pain and fatigue? How do I let other people, other moms have all the special growing up moments with my son, while I lie in bed too tired to even care? How do I sleep at night, when all my hopes and dreams lie in slim margin that somehow this will improve, when it has been getting worse for years. How do I release my dreams of having more children, or adopting, or of having a long and active future with my spouse? How do I release my students and my love of teaching, my desires to get a Master's degree so I can work with families and children, and my desires to have friends?

Chained to my bed and unable to function as the wife or mother I want. I rarely leave the house and mostly just to go to doctor's. I am unable to keep friends because I cannot reciprocate and act as a "typical" friend would. I feel my life slipping away. I am alive, but I do nothing. Without what I do, who am I? How can my sick and broken body, my muddled mind, and my heartache offer anything to anyone? What legacy will I leave?

I believe in the atonement and miracles, but people still suffer and die through no fault or cause of their own. If that is my future, if that is what is required to sanctify me, do I have the ability to endure? How will my family endure? How do I endure gracefully? How do I not let me grief and anger overpower my testimony? I want to be and do so much. I know that I will have that chance in the next life, but this life seems so long, and I do not want my husband and son to have to share this path. Perhaps it is also required to sanctify them. Perhaps they are both willing and able to travel with me. How do I make this a sanctifying experience, and not a destructive one? How do I foster joy and hope in my family when everything, even doing the laundry, or eating, or playing with my child takes all my strength? People like to say that I look good, but I have been fighting for so long, that I know how to pretend, how to ease those who cannot handle such problems, and how to ignore for a while what I cannot change so I don't ruin a moment. I am so tired. I beg for release, and I beg for life. I am not ready to leave my family, but I do not know how to endure what is, much less what is to come. I want a miracle, but no longer expect one. Perhaps I needed to be humbled, perhaps I need to be humbled still. I know there are many lessons to be learned in pain and suffering, but first you have to endure the pain and suffering, and that prospect still frightens me. I know others do and have dealt with so much more, and I feel so weak. I have been accused of seeking this, but I have fought it every step. I hope someday people can understand how hard this is for me. How much I lost, how hard I fought and worked to be a shadow of what I was capable of. How much I hoped for, and how deeply I mourned. This is a depressing blog post, but I was asked to chronicle my journey, so here it is. My heart is broken, as is my body. I want to be free of this, but not without my son and husband. I have no idea what to do with myself in the meantime. Dear reader please try to understand and consider me kindly.