There's been a lot of discussion about being tired on a Yahoo Addison's board where I lurk and Diane emailed me and asked me about being tired so I thought I'd write about it here.
This is what runs through my mind when I'm really tired:
I look at the clock and do the calculations, 5 pm, only 3 hours until I can hop in bed and 4 hours until I can reasonably fall asleep. I question myself, "Is this regular tired or Addison's tired?" My temper is short, my eyes burn, my body aches, all I want to do is close my eyes and sleep instead of driving to pick up my son. Is it possible for a person to fall asleep driving at 5 pm? No. I'll be ok. Do I take more Hydrocortisone? No, I'll wait, maybe I'm just regular tired. I get home and take care of more boring tasks, I'm cold to the bone, take a shower that only burns my skin but doesn't get rid of the cold I feel deep down inside. It's 6:00 pm, should I take more Hydrocortisone? No, I'll eat dinner first, maybe that's it. I didn't do anything but sit in front of a computer all day, how can I be so tired? I look at the clock and it's 7:20 pm. Only 40 minutes before I can get in bed and 1:40 before I can reasonably go to sleep. Time to clean up the kitchen, oh crap, how I'm I going to get through this? The nausea hits and I cave in to taking extra Hydrocortisone. Crap, I already take 25 mg of Hydrocortisone a day and I'm small. Will I get fat, will I have trouble sleeping, will I get osteoporosis? I pop the 5 mg of HC reluctantly and wish it would kick in faster. Finish cleaning the kitchen and straightening the house. I get into bed and feel huge relief. I can't screw much up from here with my malfunctioning brain, the electric blanket will eventually get rid of the cold that I've been suffering through for the last few hours. I'm too tired to reach over the bed for the remote, I'll watch whatever's on. An hour until I can fall asleep. If I fall asleep now, will I wake up with a migraine from screwing up my sleep patterns? I'll stay awake for an hour more. Ahhhh reality TV is on and is about my speed since reading is an impossibility because I can't concentrate. I can't plan out the next day because my brain can't think clearly. I drift off to sleep, hoping tomorrow will be better, that I will not be so tired...
The above example is how I feel at 5 pm about 50% of the time these days. Perhaps it's the weather, the time of year or the stupid daylight saving time that prevents me from starting my day until an hour later, makes my day start in pitch blackness and wastes an hour of daylight by making the daylight be in the evening when I'm too tired to enjoy it.
Sometimes, though only 2 or 3 days a month, I'm so tired that if I had the flexibility to stay in bed and sleep all day, I would. For so many reasons, this is not practical for me. I usually end up feeling like I have the flu, sitting at the computer, wishing that 8 pm wasn't in 12 hours. Sometimes I put my head down on my desk and cry because I'm so tired.
Addison's tired is such a different tired than regular tired. Many times with regular tired, you feel satisfied that you've done something to "deserve" being tired. There's a reason for it, you've pulled weeds in your garden, finished a big project or played with your kids. Addison's tired leaves you feeling cheated, scared and sick. I always wonder if I will pull out of Addison's tired. Will it be intractable this time? Addison's tired feels like a tired that will never and can never go away. Addison's tired hurts. Your brain doesn't work, your muscles and joints hurt, maybe you cry easily or anger easily. You don't feel like you. Hell, sometimes I can't even make simple decisions. I stare at the person asking the simple question and wonder when the words will come out of my mouth and what I'm going to say. It's like my whole body, mind and soul has short circuited. I feel like an idiot. I try not to go out in public when I'm like this.
The day after the Addison's tired I try to evaluate what might have caused the tired. Sometimes I'll look at my pill case and see that I've missed half my meds or I'll vacuum the floor and find my pills on the floor, have I gotten enough sleep over the last couple of weeks, am I eating OK and often enough. Maybe I was supposed to start my progesterone and didn't. Usually, there's no noticeable reason except my body occasionally breaks down and tells me, "NO!"
Addison's tired sucks, it hurts. Often, for me, taking extra HC doesn't even work. I just have to cry, feel sorry for myself, stay out of public, don't answer the phone, hope the work that I've done on the computer isn't crap and hope I won't have to redo all of it.
Mostly I hope that the tiredness, fatigue and exhaustion will pass. I hope I'm not getting some other disease. I hope that I won't have to spend money on doctor visits or start taking more meds and tests. I always hope that tomorrow will be better.