“Do not confuse my bad days as a sign of weakness. Those are actually the days I’m fighting my hardest.”
I am the dud of every gathering. I am the first to leave…if I show up. When I am there, I am the person to get the most “Aww…”s followed by an awkward shift in body language and an obvious desperation to change the subject.
Don’t ask me, “How are you feeling?” Don’t ask me, “How is your husband doing?” Oh, and you really don’t want to hear the answer to, “So how is your Dad doing?”
Chronic illness sucks. It also sucks the life right out of parties. I’m “that girl.” The one to feel sorry for.
I’ve always been introverted. Heaven is a pancake dinner in my pajamas, and I have always avoided social situations when I could. But this is a new level of flakiness for even me. Why? Because I don’t feel good!
My husband, who I have written about in past posts, also doesn’t feel good. For three years, his pain has become increasingly worse with no diagnosis yet. It hurts for him to walk, to move, to not move. It physically shows, so he hates going places not only because he feels like he is mimicking someone who just got hit by a car, but because he doesn’t feel like it.
I had my first chronic illness, epilepsy, under my thumb. My medication worked. Seizure-free. I could exercise, and work long hours and take care of my husband. Then my stomach was messed up…for a long time. After a few months I got a diagnosis: Ulcerative colitis. This new chronic illness is not controlled. My first course of treatment does not seem to be putting me in the Eden of UC patients: Remission. Focusing is hard, sleeping is nearly impossible and going places? My angry colon starts protesting with just the thought.
The Chrohn’s & Colitis Foundation of America has a walk. My husband immediately signed us up. Just trying to absorb the fact that I have an autoimmune disease, I was really upset to be diagnosed with another illness that has a walk associated with it. But I followed the lead of my husband and parents and was very optimistic that I would feel better soon, and there so many worse diagnoses out there, etc.
We didn’t go to the colitis walk. Why? Because I have colitis and I didn’t feel like it!
So, we are that couple. Birthday party? Nope. Fun gathering of intellectuals? First ones to leave. Froyo with my bro? Haven’t even tried. We’re starting to not even make commitments knowing that they will more likely than not be broken. I go to work, and the medication I am taking keeps the symptoms at bay for a nine hour work day, but barely. On days when the meds can’t help, I have to call in sick. When I have to call in sick, I feel like a complete failure, because I’m supposed to be tougher than this. I’m also supposed to be happy and funny and optimistic and fun to be around.
I’m freakin’ PLEASANT, dammit!
My husband’s pain is awful in the morning and then depending on if its a “good” day or “bad” day, gets worse or lets him move around, sometimes even drive down the street. My symptoms begin to alleviate in the morning then get worse in the late afternoon and then just keep me up all night. Between the two of us, there is no good time.
Husband and I love our alone time, but we are also forsaking our ability to carry conversations with real, live adults. Small talk is hard for me, and I worry my husband will only know the outside world through Facebook. Talking with others who are living with chronic illness helps, but we still are the couple to feel sorry for because of our age. We should be more active and have more friends. We should be starting a family and taking Instagram photos on top of the mountain crest we just climbed.
Do I feel stronger for living with chronic illness? I wish I could be flowers and roses, but this post is not about making chronic illness seem like a great asset. No! I don’t feel stronger, I feel like crap. The physical crapiness is made worse by the mental anxiety of not being the best employee, wife, daughter, volunteer or friend.
So, we do nothing. Some days are good, and we go out with family or run errands we had been putting off day after day, but most days are not good. What can we do? We can stay in our pajamas, cook a healthy meal and watch TV. Glamorous? No. Productive? No. But Mr. and Mrs. Do Nothing are not celebrating chronic illness, we are living with it. The best we can, day after day, and tomorrow may be good. If it’s not, then we have each other, and the comfort of our marriage…and our pajamas.
And for that, I’m thankful.