When I first got diagnosed there was a lot of talk about this is your new normal. People told me you get to the point you only notice the flares becuase everything else is just always there. I never really believed them, how does this ever become normal? I was certainly never going to accept this as normal. Then one day I went to refer to myself as a chronic illness patient and I was like am I really? The new normal, I think this is what they were talking about.
I don’t feel chronically sick, so is that really the right term for it. The truth is, yes it is. If you put someone else in my body and asked them how they felt , they would more than likely say sick. I feel sick. That is the tricky thing about invisible illnesses. Everything on the outside appears so normal.
When exactly in the last six years ,almost seven, did I start to think how I felt was normal? When exactly did waking up with intense all over body aches that you don’t want to move a single body part become normal? When exactly did having no more energy to get through the day by three and plowing on through on pure stubbornness become normal? Would someone please tell me. Someone tell me , here on November 21, 2012 at exactly 10: 02 am this became your new normal. This is what a good day feels like now.
Now when a doctor or medical professional asks me for my pain level by number, I have to really think about it. Not because I am not in pain but because I have to judge what any other human being would dictate this pain to be. At the same time being realistic about it as well, if I truly want any kind of helpful treatment. If I don’t I am either looked at as a pill seeker or a hypochondriac, or both. Now its a normal day if my pain hovers around a five or six. That is a good day. That is what I deal with everyday. The waking up with body aches and the joints that don’t want to move. The morning stiffness and ache tappers off a bit with medications and movement. I might actually get an hour or two to be productive, run errands and what not. Then the three pm drain. Its almost an exact science, I get overwhelmingly tired at three pm. Do you know where I am at three pm monday through friday? In carline waiting to pick up my daughter. Then its don’t sit down or you are completely done time. There is dinner to be made and homework done and showers taken during this time. If I sit down the chances of me getting back up are slim. Then the going to bed feeling ten times worse than how I woke up.
I can’t tell you how many times I have nearly drifted off sitting in the car at carline. I am terrified I might actually do it one day and miss pick up time. I actually park and walk in to get her because it is less likely for me to fall asleep that way. Unless it is a bad day then I do just drive through. When I can be that mother that I want to be, picking my daughter up from her class, I do. Even if it means it may increase my pain levels. There are plenty of other days where no matter what, I can not do it. I hope one day when she looks back, she will see the days I did were more numerous than the days I didn’t. I don’t mean just with carline either.
So the new normal is here. I am not sure when it came, sometime between a flare I am sure. We are still getting to know each other, this new normal and I. There are still days that I struggle to be the parent that I wish to be, the chronic pain/illness patient, and wife. Those being the three hats I wear the most. Will I ever find a balance in this new normal. I am thinking not, but I am hopeful still it will come.