It is not an unusual occurrence for people to ask me, "How are you feeling?" Sometimes this is merely formality, much like, "Hey, how are you?"
But people also ask because they love and care about me and are truly interested in how I am feeling that particular day. I often find myself responding with, "Hanging in there," or something with at least a slightly positive note to it.
I do this for two reasons: A) Hearing someone you love tell you that they are actually feeling quite horrible, physically and/or emotionally...well it really feels crappy to hear that, especially when that person has a chronic disease and feels crappy...well, a lot of the time. This actually ties in with B) I hate disappointing the people I love, even in the slightest bit, by acknowledging that I am not feeling well and that these various diseases are, at present, kicking my...well, you know.
And while I have no doubts that there are a great many people out there that care for me, the reality is also that people have their own crappy stuff to deal with. Life is full of horrible, messy, painful things and at any given moment people are surrounded by their own demons and their own trials to overcome.
With some diseases you hear people say, "I'm going to beat this thing!" or "I will get through this." I desperately want to be able to say, "I am going to beat this thing." I want to be strong. I want to be a fighter. But how do you "beat" something that is incurable and progressive (and that is not exactly responding as we had hoped to the treatments that we keep throwing at it)?? It is one of the frustrating things about chronic diseases. They are a marathon...a never-ending marathon with lots of really steep hills and no finish line.
Many days I feel as if I am just treading water. I try to keep my head up to avoid another relapse...and yet they still manage to find me. I swim as hard as I can to keep my corneas from drying out and inevitably end up with painful inflammation every 4-5 weeks. I balance the various physical pains alongside my sanity and I fight to hang onto hope while battling the MS-depression-demons that are often chemically altering my brain. I find myself grasping onto anything I can if I think it might help me float awhile longer.
Today I baked.
I baked cranberry scones. I baked peanut butter shortbread cookies. Then I put a pork chop with yummy sauce in the crockpot for dinner. Then I cooked some chicken so that I can chop it up and eat it in salads this week when I am too busy with schoolwork to come up with anything for lunch. If you know me (and if you are reading this, you most likely do), you know I do not consider myself a cook of any merit. I am no Martha Stewart. My friends Alice and Steve sent me an apron that has a big treble clef (a symbol used in music) and says "Treble in the kitchen." I love the musical reference, but I also love the fact that it is true! I am trouble in the kitchen! And yet today I was Martha Stewart and Paula Deen and Julia Child. I put on my "treble" apron and mixed dough and kneaded it with my hands and rolled it out and cut it into adorable shapes. And standing there with my apron on, my hands immersed in dough...well, it just felt good. It felt like playing with play-doh, getting my hands all messy, focusing on nothing except the wonderful feel of cookie dough.
Sure, I have a list of things I need to be doing, that I should be doing. But sometimes you gotta tell the list to take a rest and spend some time doing exactly what you want to do and nothing more. Maybe you need to drink tea and read a few chapters of a novel. Maybe what you need is to be a couch potato and catch up on all the things on your TiVo. Perhaps you need to hire a sitter for the kids and take yourself to see a movie. Maybe what you really need is to get out some coloring books and some crayons and spend the afternoon letting your inner child play (right, Jan?). Or maybe you need to bake lots of fattening, carb-filled goodness.
Sometimes you just gotta listen to your heart and ask it, "What would make you feel better? What do you really need today?" And then you ignore your brain telling you to do the laundry or finish that project at work or a million other things it is yelling at you to do.
In times of rough seas when your arms are tired of keeping you afloat...during those times, my motto is: Whatever gets you through the day.