Living with a chronic condition is like living on a rollercoaster. You have your ups and downs, but then there are the loopity loops that are fast, intense and back to back. Those are the kickers. The ones that take you weeks to recover from. That’s where I am now. In recovery. Recovery…and almost a re-discovery.
If you follow me on social media, you would know that for months I’ve been gallivanting around the country advocating and spreading IBD awareness. You may also know that I found myself living with some serious, painful EIM’s (extra intestinal manifestations) that popped up while I was in between treatments. My psoriasis has manifested into psoriatic arthritis. And my Erythma Nodosum has gone from only manifesting while flying east, to manifesting whenever it wants. Usually when I am lacking sleep and stressed out. Some how both of those things flared up at the same time, which eventually led to me contracting an infection. How? I really don’t know. But I found myself in an ER in a city while on a work trip, discharged only so that I could return home to my familiar ER & team of doctors. What I thought was a mild skin rash, was in fact, Cellulitis. I was hospitalized for 5 days. Suddenly I remembered, “Oh yea, girl. Don’t forget you’re a patient!”
I didn’t even realize just how much pain I was in until I was forced to stop, lay down and be quiet. My body started screaming at me. Questioning me. Asking me if I forgot who I was. That I couldn’t save others without saving myself. My body and the shape it was in, started to concern me. It was shutting down, and I hadn’t even noticed. I was too busy trying to survive to help others survive, that I was wasn’t really paying attention to how much trouble I was in. I suppose that’s normal. As patients & parents, we just push through. As advocates, we don’t normally have others checking in on us. We do the checking. New ailments or symptoms pop up, we asses the damage and whether we can live with it. Usually, if something new pops up, I’ll make an appointment very quickly to see the team. But this time I didn’t. I just had too much to do. Too many bills to pay. Too many fires to extinguish. Too many deadlines to make. Too much time away from home. I neglected myself and my health. I paid the price.
I could say never again, but I know that’s a lie. I’m human and I’m a single mother. I may neglect my health again in the future without realizing it. But I can say that I vow to try to do better. And I will do my best to listen more to the people around me. I have a small, tight circle of friends living with chronic conditions who tell me to sit down and stop. When I attempted to drive myself to a conference only a week after being discharged, my two good friends set me straight. I needed to not only put myself first, but my family. There was no reward for appearing to be strong, when it’s very clear that I need to lay down somewhere. Traveling, working and extending yourself when you are so clearly not capable of taking care of yourself is not the epitome of strength. It’s not pushing through. It’s willful ignorance and irresponsible. As an advocate, as a mother, as a patient…I would have been showing people that I didn’t care. More than that, my son’s tears would have been in vain. Yes…tears. This hospital stay brought lots of tears. I sometimes forget that what feels like normalcy to me, is still frightening to my little one. Although, we keep the lines of communications open about my disease(s) and treatment(s), it’s still emotional and troublesome to watch your mommy take a health hit.
So my recovery is part physical, part emotional and part organization. I need to come out of this stronger and smarter. In how I work, management my time and my life. I can’t work more than I play. And I can’t play more than I mom. And I can’t mom more than I play. And I can’t play more than I work. It’s the time for steroids & drip drop. It’s time for hugs and listening. It’s time for reading and sleeping. It’s time for chess & tea. It’s time for drinks with friends & late night chit chats. If I hadn’t been knocked down into slowing down, I wouldn’t have realized that more than being sick, I was losing a bit of who I am. I had no time for anything but work and advocacy. It’s time to take care of my whole self, recover and discover myself for the first time.
