Most of the time, my mind is alert. Inquisitive. I want to know everything. I want to know about the world around me, and in that knowing, I want to experience those things around me. I want to know it all and I want to know it now. I want to write a novel and I’m learning to do that the slow and hard way, much as everyone else has to do. I also want to branch out and try to write other novels. I want to continue to learn things, about the past, what we are capable of as humans and the geology of this wonderful planet of ours. I have a huge bucket list which I am very slowly working through and it will be slow as a lot will involve times when the children have flown the nest.
But to do the things I want to do, I have to consider everything else. The mundane and everyday situations that make up my life. My full time job that keeps me out of the house nearly eleven hours a day. The children who then want to talk to me about something they’ve been doing. Then I want to read books, finish the final edits on the first crime fiction novel I hope to send back out this month and compete in the madness that is NaNoWriMo month. All these things impact on any decisions on further activity for lifes wishlist.
I found this weekend that there are limits. For the majority of the time, I manage the fatigue of the Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome, really quite well. If you didn’t know otherwise, you wouldn’t know there was anything wrong with me. Well, not last week. After a week of extra long hours at work, and I mean long – 17 hours one day. I pushed and pushed myself to keep turning in because the job needed doing and it was my job. I did it. I did it all and I was thrilled. But now, now my body relaxed and I didn’t feel I could get up again.
Friday night I was supposed to take my little man, with my Other Half and some friends to an organised Firework display. I didn’t have the energy to move off the sofa and it wasn’t just, oh dear I’m tired, it was, if you make me, I’m going to fall on the floor and my body will weep all over your feet kind of exhaustion. I didn’t give myself too much of a hard time over this, because we had our own firework display at our house, with family and friends set for the Saturday.
So it comes down to this. Fairly disabling illness, which more times than not, I have a pretty good grip on, but if the body says no, it’s a no. Compromise with the illness and I’ve more chance of doing the important things. The event at home with friends and family and better memories and photo opportunities.
These illnesses both take from me, but if I allow some of this take, and give it my time, I save enough for myself, for the important events. Those I’m not prepared to miss.
Give and Take with an illness I can neither see, nor fight. It’s a new and adaptive way of living. It’s not easy either. It’s frustrating because the person I am is locked inside these boundaries. It can be difficult explaining to others though, just how bad it is when you look as well as you did yesterday, but you’re saying it’s now impossible to do what was possible yesterday. I do have to make some kind of peace with this though, or I will end up burnt out and living my life through anger.
Do you life with boundaries and adaptations?