"I am so tired." "I am exhausted." "Not sure I can do much more." These are all common phrases you hear on a daily basis. The way we define these words - tired, exhaustion, I can't do any more - is based on our own personal experience. If you are chronically ill, these definitions change. So far, I have not found a word that truly explains what it is to be tired to me. I don't presume to speak for all chronically ill people, but I have had enough conversations to know that I am not alone in this experience. So, if you are truly interested in knowing and understanding your chronically ill friends and family, this is a concept you need to try to understand.
We wake up tired. I mean, we have slept 8, 9 or 10 hours and we wake up and feel tired. The tired like you feel mid-day after a really busy day, and it is just 8 a.m. for us. So when we say we don't want to plan anything before 10 a.m., it is not that we are lazy, we simply need that time to get going. All the things you do absentmindedly take real concentrating and negotiating. For instance, "I need to take a shower. ugh, but I have 3 errands I need to run, and I have dinner out tonight. I am not sure I can dry my hair. Well, you know it doesn't look that bad....I will wash my body and wait till tomorrow when I have less to do"
By our mid-day after probably doing only half of what you do, we feel like you do around dinner time if you have been busy the rest of the day. Around dinner time, we feel like you feel if you have pulled an all-nighter. Seriously. Maybe even more tired than that. I have never been well, so I don't know, I am going by discussions with my well friends.
Then you add aging, weight gain, pain, emotional stress and well, you can pretty well multiply our tiredness 10 fold.
Why am I talking about this? Because we don't like to talk about it with our friends and people who don't know us well. We want to appear normal. Plus we don't want people to not ask us to do things or involve us in things. Because most of us, the ones who have truly accepted our bodies, have learned exactly how much energy we have and we mete that out precisely. I mean PRECISELY. Sometimes we miss the mark and we pay. You may too, because you have to carry us home. LOL So when a chronically ill person tells you they will do something, know that they plan their entire day around how much energy that will take so they won't let you down. Sounds exhausting, doesn't it?
I have shared the spoon theory with you before, and if you are new to my blog, please go read it: The Spoon Theory. Hopefully my words along with hers will help you to understand a bit better. But please know, we want to be treated normal. We just need you to know that when we say we are done, don't make us feel guilty or bad, because we are already doing that to ourselves, we don't like to miss out on things.
I have a great family who helps me. My husband has helped to teach me about patience with my body and the importance of spending my energies wisely. My children have taught me you don't have to do big things to have fun and bond. A night in with a movie and snack foods is just as good. My friends have taught me how to truly love a friend. They give of themselves in amazing ways. My great friend, Allison Dahle, gives of herself constantly. She drives me to MY events and pitches right in where she sees I can't. She can gauge my exhaustion almost as well as me and Jack! And she just loves me no matter what. We planned to go out and shop and have a big day, but I can't, well she comes and gets me and gets me comfortable on her couch and we watch tv or giggle and talk or I sleep and she does whatever.
I am a lucky woman. Because of my family and friends, I get to continue giving to this world. And please know, family and friends, I know it is because of you that I can do the work I do. I love you all dearly.
So choose love and joy every day! Oh, and let's end gun violence!!!!! :-)