Being in a new place and meeting new people I have tried very hard to be up front and honest about my disease and explaining what that means when it comes to committing to events or invitations. I am very realistic that no matter how I explain it, people who do not live it can not truly understand it. I guess that brings me to the reason for today's blog.
One thing I have tried to use as an explanation is that everything you do has a cost associated to it. It's a concept most people can relate to on a basic level. You want to go out drinking all night, you are going to pay for it both in your physical condition in the morning. You do a quick touch football game with the buddies after years of not throwing a ball, your arms are going to feel it in the morning. When you have a disease that has chronic pain and fatigue those decision making tasks of what you do you will pay for comes with every action. It's constantly in the back of your mind on good days and bad. On bad days you look at the shower and wonder if you will have enough energy to brush your hair or actually put clothes on after. On good days you wonder how much and for how long you will pay for that house cleaning or trip to the mall for some retail therapy with your daughters. Even intimate time with your partner is a cost comparison. Along with all these decisions going on in your head you deal with the guilt that most days the answer is you just don't have the chips to pay for these activities in advance and you dread the pain and exhaustion you will pay for it after the fact. Or as many in the chronic illness community say "you just don't have enough spoons".
Most of us will chose life moments any chance we have knowing the cost that will be paid if we can. It is just very hard for those in our lives to understand that that 2 hours of expending energy doesn't equal 2 hours of not feeling so hot. It can cost us many more hours or even days of recovery to return to our version of "functional". Just the stress of making decisions over many events or the strife of misunderstanding can trigger a flare. How can you explain that fun little complication and not expect people to feel like they are walking on eggshells around you constantly. It's such a muddy, messy, convoluted cycle of crap.
I don't know if this blog has a purpose beyond my own venting. I'm sick and tired of being sick and tired and not getting treatment because of bureaucratic crap. So this is my vent for the day...I'm sure there will be a price to pay for it ;)
