What does that Mean?
Hey everyone, it’s me Lisa Hilton. You may know me from the Lyme disease world, or maybe the Ehlers-Danlos Syndrome (EDS), Fibromyalgia, or Chronic Fatigue world. I am in lots of groups and they all seem to be the same illness to me, or at least share the same symptoms, pain, misunderstanding and lack of support from the medical community.
One thing I noticed is none of us know how to answer when someone asks, “How are you.” I seriously avoid eye contact at stores and at gatherings, (should I happen to make it to one), just to avoid seeing someone I know that inevitably will ask me, “Hey, how are you doing? Are you any better? What are you up to?”
Ok, I know that sounds mean. The person is well meaning right?
Well, here’s the thing. If you are chronically ill, it is hard to know if the person is genuinely asking, just asking to be courteous, or just really wants to here you say, “I’m great.” Whether it’s true or not.
How many times have we started to ramble on about our symptoms or how we ‘truly” are just to notice we lose the other person’s attention pretty much immediately. Of course, it also depends on where you are. If you run into a person at grocery store then of course they don’t want to hear your life story as you are standing in the milk aisle. But if you are at a family dinner and someone asks, then what? If someone sends you a message asking you through email or Facebook, then what? Is it ok to tell the truth? Are we burdening the other person with the truth? How far of the truth do they want to hear? And how much do we really want to share?
So basically, I started using the term, “baseline.” Baseline is just simply your normal daily symptoms that you are used to having. “I am baseline today, how are you?”
What is a good day for someone who is chronically ill, might put a healthy person in the ER for the day. When you are chronically ill and in pain daily, you start to learn to live with the symptoms. they still suck, but we have to somehow function. You have your “baseline” symptoms that you pretty much just have everyday. Each person will have different baseline symptoms. Mine for example is, fatigue, weakness, back pain, dizziness and head pressure. Those are my baseline symptoms that I pretty much wake up with every single day.
Now If I wake up tomorrow and my back hurt less or I didn’t feel that band wrapped around my head that I so constantly feel, I might say to someone, “It’s a good day!” So they will think oh that means there is no symptoms. That is pretty much never true, so now I have termed it, “better than baseline.” “I am having a better than baseline day today.”
If I wake up and not only do I have my normal daily symptoms but now I have abdominal cramping, joint pain in my knee, and seizure like activity, then Id call it, “below baseline.” “Thanks for asking, but I am below baseline today.”
It just makes it easier for those around me to understand and gauge how I’m feeling. A stranger in the store might not get it, but family members, friends or those close to me, especially in the invisible illness community will get it.
So, today I wish you all a “Better than Baseline” day! Whether that means less of a headache, or that pain is a 5 instead of an 8, less muscle contractions for the moment, a seizure free day, whatever that means to you….
I wish you a Better then Baseline” day. ♥