Living with a chronic illness


On the average day, you would find me going and coming, running my businesses and shuffling my children around from here to there. I’m usually up before 6am and often to bed late in the evening. I throw some really great events that are well attended, and I am at all of my children’s conferences, performances, belt testings and football games.

To the average person, I hardly look like a person who has a debilitating chronic illness.

Most of the time when people see me, I look like this:

When I was pregnant with my third son, I was diagnosed with anemia. Not just anemia where I could take a small pill and go about my normal day to day activities feeling moderately tired. But an anemia that required two transfusions and weekly infusions for the remainder of my pregnancy, administered through a PICC line. After I delivered, I thought I would be better – it just didn’t happen for me that way. Eight years later, I am still severely anemic.

For me that means, I am tired all the time.

All the time. Even drastic changes in my diet did not improve my blood counts. I require treatment quarterly and while its treatable, it is highly likely that I will never “get better.” The whole treatment process is rough and occurs in an infusion center. It’s hard on me and my body, despite its best efforts, makes treatment difficult on its own. My veins are fragile and very thin and because of this I recently elected to have a port put in so that treatments are easier on me and the nurses that help me. I hide it under my clothing most of the time, because mine is often bruised and makes others around me uncomfortable.

I often find it hard to reconcile the girl in the bed from the lady who is so full of energy

and the life of the party. But that is a reality of my life and rest is required. Over the last year, I have learned to schedule my rest. Imagine that – scheduling rest. It isn’t easy, but I have found that if I don’t plan for it the universe has a way of making rest mandatory. This year I have had shingles twice, once on my side and once on my waist. With the most recent occurrence also I had Bell’s Palsy and woke up with the right side of my face sunk down. So now, I rest.

One of the hardest things about living with a chronic illness is the isolation that I feel.

As a doer and a giver of my time to others, its hard to admit when I need help because so quite often it appears as though everything is fine. I make my life look easy. Most days, it’s not fine and it is anything but easy. It’s hard for others to realize that when I ask for help that I really need it. They see me as their fun and happy go lucky friend not the one that often needs a break. It’s a pretty confusing thing to watch friends try to realize that those two people are actually one me.

Most days, I smile and put on a brave face and remain positive. And some days, though not too many – I am angry. Angry that my body doesn’t want to cooperate and do the things I want it to and angry that my kids get the short end of the stick. Thankfully, I don’t have too many days like that. Although at one point in time I did.
Adopting an attitude of positivity and gratitude is what has gotten me through. I realized long ago that if something was going to change, that change had to start with me. Every morning, I write 10 things that I am grateful for. They often are small things. The things that I wouldn’t have noticed, unless I chose to.

It’s hard to have a bad day when you start the day thinking about the best parts of life.

I don’t suggest that being positive is easy, but I am saying that it takes practice. I sometimes have to remind myself that not every day is bad, and tomorrow is right around the corner. I’m a work in progress, and I’m ok with that.