Living life and managing chronic illnesses is really a balancing act. You not only have to balance your schedule – like everyone else – but you have to balance chemical reactions in your body. If you become, unbalanced life is not only stressful, but painful.
Some people think because I work from home that I have all the time in the world. I wish! First off, I work 5 hours a day – 5 hours where I am actively engaged in teaching. Then I am exhausted so I take a nap. I also go to PT twice a week and often have a doctor’s appointment on another day. I also spend most of Monday grocery shopping and cooking Seiya and my lunches for the week. This might not seem that impressive but the goal isn’t to say that I’m “doing “everything” but to say I’m “doing something.”
In addition, I have to keep an eye on my body which can act up at any moment. Walking around with my body is like walking around with a two year old. You may get some hints that they are going to act up and sometimes you don’t, but all the sudden my body is screaming and throwing a full on temper tantrum. There are some things that I can do to reduce this from happening – feeding it when it’s hungry, making sure it has adequate sleep (sometimes napping), staying hydrated and not expecting too much from it. The latter is the hardest.
There’s a theory in chronic illness that everyone is given a certain amount of units of “feel goodness” a day. They are referred to as spoons (because of some long and unexciting story….here’s a link to that story) On an average day I wake up with 10 spoons. Working online takes 5 from me. Then going to PT takes 2. (It actually regenerates me some) Then I am left with three and Seiya wants to have dinner with a friend. By the time I do that – I am OUT!
But I can’t measure it so easily. Sometimes I do a new activity. Sometimes I use a little more than I expected because soemthing slightly unusual happens. Sometimes a food bothers me and I end up sick and depleted of all my spoons. Sometimes I don’t get enough sleep (either because I stayed up late or couldn’t sleep) and wake up with fewer spoons.
Also sometimes I do a new activity. For example, I decide to go on a walk with Seiya and it ends up being hillier than I expected or longer because we can’t find the car. The latter is a very common experience for us. LOL! I can think of at least three times when we haven’t been able to find the car for an EXTENDED period of time (20 mins to 2 hours. Yes! 2 hours) Anyway, I wish I came with a meter and an alarm that said – “You are running out of spoons! You are running out of spoons.”
Anyway, that’s what it’s like to live with a chronic illness on a daily basis.