Have you all heard of 'The Spoon Theory' If not then it's time you read about it. It's just a way of describing to non sick people what it is like living with an energy sucking disease. Crohn's is definitely an energy sucking disease and I often refer to 'spoons' for energy because this theory has become wide spread enough that many people know what your talking about.
So if you haven't read it go read it. Then I can tell you that while on steroids I had more spoons then I could use, buckets of them. So many that I only had to sleep 3 to four hours a night and was never tired. Spoons to cook with, spoons to clean the house, spoons to plant the garden, spoons to walk the dogs. So many spoons!
Then they took the steroids away, and not slowly like they do with most people. They took them from 3 pills a day, to one pill every other day for a week, to no pills at all. I went through severe steroid withdraw. I also had adrenal insignificance, not enough to throw me into crises but enough that several weeks have gone by now since being off of steroids and I still have hardly any spoons.
It's getting better. A trip up and down the basement stairs no longer sends me to bed for the rest of the day. A big part of that is the myopathy is getting better and it's no longer such a struggle to do it. I'm back to cooking again, yes I even stopped cooking. I just had no spoons and couldn't hardly move from my bed for a while. My poor kids were begging me to cook again, as dad's idea of cooking is to grab a box of hamburger helper, and the kids hate hamburger helper.
It's not just the energy withdraw takes from you, it also takes the motivation away from you. That's harder for me, to be unmotivated, to actually not want to do anything. So that's what I'm working on now. I can't really do much about my energy levels, I'm stuck with what ever spoons I get for the day, but I can work on staying motivated.
I pick one thing to do a day and try and actually get it done. At first it was cooking again. Then I added meal planning, then grocery shopping. I do still need help with the shopping so Kurt comes with me and we do it together. Now I'm working on finishing up Chloe's room. I started it back when the histo meds first put me into remission, but then I fell into my old habit of feeling great and taking on more business then I should, then following the same old pattern I got sick again. This time we decided I'm not going back to work, and maybe that's part of my total lack of motivation. I loved my job but that's a story for another day.
The dresser I painted last year that started C's room overhaul
Back to Chloe's room. I have been picking just one thing in her room I want to get done. For example I wanted to get her pull shade done. The whole thing was still to much for me so I broke it down in little steps. 1. find a reference photo 2. edit the photo and create a line drawing from it. 3 project the line drawing onto the shade 4. color it in (this part actually took several days).
A photo of her zebra roller shade.
Next I have to work on the sewing and I am not so good at it, so it's taking me some time to find the motivation to do it. :) I have to sew the bed skirt, it's just fabric stuffed under the mattress here so I could get an idea of how the bed would look. Then that black coverlet in the middle of the bed has to be hemmed and I'm making zebra print valance to go over the long curtains so that the wire doesn't show.
The point of this is that having just a little thing done each day has helped at least feel like I am accomplishing something. I still have to much back pain to mop floors, and to me the house is not clean unless the floors are clean, so cleaning the house gives me no sense of accomplishment. Doing Chloe's room bit by bit has been very rewarding though. Watching it come together, seeing her come home from school all excited to see what I did that day. It keeps me motivated and makes it worth fighting the exhaustion.
However today's added assignment for myself was to blog, because posting what I'm doing is one way to keep motivated and moving forward. Also I was feeling guilty for not keeping up on the blog posts, and sharing what I was going through. After all it's a Diary of a Crohnie, and we have more then our fair share of bad days. When I am doing bad though it's hard just to go through it, I don't like to think about it, and writing about it forces you to do that. So I'm going to try, good or bad, to keep writing.
Love always,
D.
