The day I was diagnosed with fibromyalgia and chronic fatigue the doctor left out one very important item. My worker elf. You know, the one who cleans the house, does the laundry, grocery shops, walks the dog and makes dinner. Yeah, that little guy. The doctor forgot to give me one.
Of all the problems that come along with my illness the fatigue is the one I despise the most; at least for today anyway. My house is never all clean at the same time; and I don’t mean ready for a House Beautiful photo shoot, I mean just clean enough that I wouldn’t be totally embarrassed if someone stopped by. If I go grocery shopping I certainly won’t have the energy to cook a meal that night, quite possibly I won’t even have the energy to put the groceries away. Cleaning the bathroom has to be done but then you can forget going downstairs to do any laundry.
I started writing this little post last night, but due to some pain creeping in I wasn’t able to focus enough to type anymore. I would have appreciated the help of my little elf yesterday; he would have made all the difference in the world and this “Fibro Friday” post may have been written on time. I woke up feeling pretty good and had quite a bit of energy compared to normal. But by the time I had gone to breakfast with my friend, watched my grandson for a few hours, did a load of laundry and ran to the grocery store for 5 items the pain and exhaustion had crept in and I was done for the night.
I NEED MY ELF!
I know when I was working full time I always joked that I needed a clone. I did. But I don’t think you can grasp the way chronic fatigue invades your life unless you’ve experienced it. The doctor told me that my body was almost totally depleted of vitamins b and d; I wasn’t retaining those nutrients at all. Now I have to take vitamins three times a day to even function with the small amount of energy I get. And you can just chuck the whole day away if I forget to take the vitamins just before bed; I wake up exhausted.
Christine Miserandino wrote an excellent article call the “The Spoon Theory” and you can find it at http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/. If you’d rather watch it as a video it’s also on here on youtube. Through her Spoon Theory she has come up with the best way I can imagine to explain chronic fatigue to someone who has never experienced it. I urge you to read it if you’re not familiar with it already. Whether it’s you who suffers from fatigue or someone you love.
I think the saddest thing for me is that it makes me appear lazy and possibly like someone who doesn’t enjoy being with people or doing fun activities. I know my family and close friends understand enough, and care about me enough to know I’m not faking it; but sometimes I can sense frustration in them because this affects them too. By all normal standards I should be able to accomplish a lot more in my day than I get done; things they’ve asked me to do for them or go places they’d like to go. There’s even a lot more I want to get done for myself. I used to do all sorts of crafts and would love to do some now, and I’d love to get my house organized better and I’d actually love to be making meals to take to my friend who struggles with her health but when you’re given such a limited amount of energy in a day you have to prioritize and it always seems like chores win over recreation or self-interests of any sort.
I guess that’s one of the things I have to learn how to do. Accept the way it is now and prioritize. However, making sure that I make time for things I enjoy isn’t going to be as easy. I don’t feel I play the martyr; but I was brought up that work is done and the house taken care of before there is any time set aside for personal interests or fun. That’s just how it should be. So I have overwhelming guilt if I get out a craft project of any kind when there are still dirty dishes in the sink and a load of wet clothes still sitting in the washer.
So that’s going to be my biggest battle this year. You know, this year, turning 44, my bucket list and trying to have a more joy-filled life. My birthday is definitely creeping up (this week as a matter of fact) and it sure is a hard one for me like I said. I need to get this figured out. It’s definitely not the way I planned for my life to be when I was a kid lying on my back in the grass looking up at the clouds. My future looked awesome from there. There was no chronic illness in that script I was writing. But I need my life to look awesome from here! It’s going to take some work, some refocus and some steps toward joy. It’s the only life I have, it’s the one God has blessed me with and I intend to start living that way – like it’s a blessing! Takes me back to my joy workout – gratitude and contentment!