I’m going to stray a little from the timeline of my story and talk about the biggest symptom people with hypothyroidism complain about, fatigue and exhaustion. Real fatigue and exhaustion brings you down. Really down. Living with it 24/7 is a constant struggle. I mentioned before that I would crawl into bed as soon as I got home from work. I usually fell asleep for a while. However, when I woke I didn’t feel refreshed or ready to do anything at all, let alone cook dinner. I managed to drag myself out of bed to fix dinner most nights. A lot of nights I used pre-prepared foods when the feet and leg pain were a huge issue. It was stuff I either hadn’t used in years or had never used before. I felt guilty. I love to cook, yet I had no energy or passion to be in the kitchen. And, I knew it wasn’t very healthy.
I crawled back into bed when dinner was done. By this time, my husband had started doing the dishes because I just couldn’t do it. I let things go and felt guilty because I was holding to the social standard of a wife keeping a clean home. Then one day, I remembered something a therapist asked me once, “What do you think people would think of you if you didn’t have your job?” and applied it to the situation. At that point, I didn’t care what people thought of me because I was too tired. Forget the dusting. Forget the vacuuming. Forget it all. I was able to manage to do dinner and the laundry. Those were the really important things. Right?
In February of 2009, our agency was hit with the need to cutback because of budget issues. I went from working 35 hours a week to 15 hours a week. My boss even offered me a 60 day medical leave (unpaid) that I really wanted to take, but my husband was against. This extra time at home gave me more time to rest and the ability to wake up and get ready in a more leisurely manner.
Trying to explain the fatigue to friends has always been difficult since a lot of people use “fatigue” and “exhaustion” to mean they are more tired than usual. I’ll admit that I was one of those people. Now when I used those words it means, I literally have no energy. There were times that in the middle of getting laundry out of the dryer, I got so exhausted that I had to lie down and take a nap. I have a wonderful friend who is always asking, “When are you coming back to Aikido?” I want to be able to say, “Next class!” What I end up saying is, “I don’t know.” I just don’t. Even with my energy levels being back up to where I can really cook, clean and do things, by the time class rolls around, I’m running out of energy and the last thing I want to happen is to sit down on the mat in the middle of class and not be able to get up or drive home because of it.
I’m going to borrow the analogy of the spoons used by But You Don’t Look Sick – http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf Another wonderful friend gave this to me one day when we were talking. She has lived with lupus for years and was quite often my go to friend when the testing, uncertainty and fatigue were all getting to me. The woman who wrote this story was trying to explain to her friend what it is like to have lupus. I knew exactly how the writer felt when she explained it to her friend and I think it applies to anyone who struggles with living with any chronic illness. I was crying by the time I finished reading.
Every day we start with a handful of spoons. Each spoon represents the energy it takes to do one task, getting out of bed, getting dressed, brushing your teeth, taking a shower, fixing breakfast. That’s 5 spoons gone already and you haven’t even walked out the door. Getting to the car, driving, getting from the car to your office, one for each task at work, getting from your office to your car, driving, getting back in your house/apartment. Do you have the picture? By the time you get home, you are already limited on spoons and you have to choose what is most important to use the remaining spoons on? Fixing dinner or attending to your sick child? Doing laundry or going out with friends?
Those are the daily limits I live with. Every morning I woke up and had to take stock of how I actually felt before I got out of bed. How I felt was going to determine how I could start my day, what I could and couldn’t do. Going through the day I did and still do assessments throughout the day. How am I feeling right now? Does this mean I will/won’t be able to clean the bathrooms when I get home? Fatigue and exhaustion are still battles I face, but I’m in a much better place than I was a year ago. I find myself with just enough spoons to get through the day.
If you are a friend of mine in Facebook reading this and you wondered but never asked, you now know the meaning behind my status when I post: Debi Smith needs an extra spoon.