What does sick look like?

A suggested topic from Sue...

What does sick look like? I know this differs for all of us. I'll tell you what sick looks like for me.

Usually sick looks like my usual day to day life. The difference is that I might appear irritated or depressed to those who aren't expecting sick Dusty.

If others look closer or listen, they will notice that I don't answer "How are you?" or to those closer to me I'll answer that question with, "A little tired today." TRANSLATION: You don't want to hear what crap I feel like today, it would be a real downer for you if I answered this question honestly, besides, you're probably not listening and don't really care anyway." Let's get real, most people don't want to hear it if you don't feel well so we minimize or avoid the question all together.

When sick translates to irritation with others around us, it's usually something they interpret because your behavior is so different from normal behavior. For example, you're usually opinionated and passionate about something. When you don't feel well, you don't care. When asked a question, you might reply, "I don't care." For some crazy reason, that response is interpreted as irritation or bitchiness because it's such a different answer than you usually give.

You might appear depressed because you're using what little energy you have to get through the day, go through the motions, take care of your family, keep your job. As a result, you might not talk much, you might hide yourself in your office completing projects that you can do sitting down.

Physically, what does sick look like? If you're not flat on your back on the couch or in the bed and you feel sick, you're up and about trying to take care of business. You might not have had the energy to take a shower, you've got big, dark circles under your eyes that those closest to you can't see but acquaintances in public places seem to love to point out. Maybe you don't eat or can't eat because you don't feel well. You might find yourself staring blankly at your computer screen at work. Wondering what the hell you're doing sitting up. Basically, you might spend the day trying to look and act normal when every fiber of your being wishes you were in bed and/or had someone to take care of you.

Sick looks like you and me. Sick appears healthy at times. Sometimes you're the only one who can see the signs of the sickness. On days like this, it's hard as hell to look in the mirror and see that sick face looking back at you, pale with circles under the eyes, the ghost of you looking at you in the mirror. For me, I fantasize about what life would be like if I didn't have the diseases I have. I wish I had a cook, a housekeeper, a nanny, a personal assistant, a valet, a nurse, someone to feed me and bathe me. Then I realize, I've got to keep my wishes, tears and complaints about being tired to myself and keep on truckin'.

Regular tired versus Addison's tired

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.

Things change

Stress really gets to me.  Some doctors claim stress does not require increased hydrocortisone.  I challenge them to live in MY body!  I've got lots of stuff going on and I'm really feeling it.  I'm tired, tired, tired by 8:00 pm, looking at the clock and waiting for the hands to creep to 9:00 so I can get in bed.  I went on a "run" with a friend and all I could do was walk for a lot of it.

Alta North Road - Melisa.  The first person to run with me in a long time.  I was awful but she wants to go with me again.  She's fast!

Great Pyranees working the sheep.

The sheep and dogs.

I liked this bus.  It is fun!

Hanging out with Allison, Dave and the Grandbaby.  Dani's a mermaid.

A few pictures of A & D's house in the final stages of packing up and moving out to Boise.  It looks so different from how it did a few years ago (see video clip at the bottom).

Empty dining room where the big table used to be.

Living room where the round table and couches were.

Bryce and Jessie singing happy birthday to Paul at A & D's house in 2004.