When one lives with a chronic illness, day to day life changes. The predictable becomes the unpredictable. Little things suddenly seem like big things. Activities that once were done with little to no thought now prove to be often difficult and sometimes impossible. And a body that at one time could handle things being thrown at it from all different angles no longer holds up as well under stress. All of these things are difficult and can lead to frustration. But for me, by far the most frustrating result of life with a chronic illness like mine is the fact that it is impossible to explain to friends and loved ones exactly what is happening inside. I have tried, even for my own benefit, to put into words the effects that my illness has on me. For someone like me, who likes words and enjoys the challenge of finding just the right ones, it is a source of extreme frustration to not be able to find them. I believe the misunderstanding that often exists between me and those around me is exacerbated by the fact that I look fine. If you were to walk into my house right now, you would see me sitting in a typical living room chair and typing on my laptop. In contrast, if you were to walk into the home of some that I know, you would not find them sitting upright in a chair. In fact, you wouldn’t find them at home most likely. To see these folks, you would need to travel to a local hospital where they are being treated for various illnesses. Many would have bald heads due to radiation and chemotherapy. There would be no doubt in your mind that these people would be unable to carry out regular daily tasks. I would dare to say that few, if any, would even expect them to do so. After all, they are battling a disease that is draining them of all their energy.
Before I go any farther, I want to be clear on a few things:
- I am extremely grateful that I am able to be home, sleeping in my own bed, sitting in my own chair, and even completing tasks around my house that need to be done.
- In no way do I even begin to think that I can compare my illness to those who are battling a disease like cancer. They are apples and oranges to each other.
- I also want to be careful that I do not cross over into a pity party for myself. There is a fine line to walk when trying to explain an invisible illness without making it sound like the sky is falling in on that person’s world. Often that line is difficult to find. Often I have crossed it, but today I want to try to not commit that offense.
Those things said, I have to admit that lately I have found it nearly impossible to keep up with all that is taking place around me. I have done much of what I needed to do, but I also have missed out on things because doing those things left no reserve to do any others. It is the missing out on things that today has me battling the above mentioned pity party.
Fifteen years ago, my husband and I were smack in the middle of the busiest years I had ever seen. We had four elementary school aged kids, all involved in multiple activities. I have written about this in the past so I won’t re-hash it. Suffice it to say that our calendar had so much writing in so many different colors (each kid and each activity was color coded and written out by the month on a large erasable wall calendar) that just thinking back to it leaves me exhausted! The thing is, though, it was all accomplished. We never forgot a game or a practice or a kid (okay…one time I did forget to pick up one of the kids from the school, but it only happened once–I think). In addition to being mom and taxiing kids all over the Twin Cities, I was responsible for meals, laundry (those uniforms ALWAYS needed to be washed!), coaching various teams, a dog, a cat, cleaning of the house, a part time and sometimes full time job, world peace, world hunger…you get the idea. I was BUSY.
And I loved it.
I thrived in it.
My adrenaline never stopped.
Now, years later, one additional activity added to a fairly light schedule, throws me into a tailspin. The activity may be a wonderful event. It still causes stress. If the activity is a not-so-wonderful event, the stress feels ten times heavier than it should. Because of this unwanted effect of a chronic illness, I have had to begin the learning process of saying no to some things.
This is where I am today and it is frustrating me.
It seems life for me has been non-stop stress for the last couple years. Good things as well as bad things have contributed to that stress. The bottom line, though, is it doesn’t matter. Good or bad, stress is very real and I have found that I just don’t handle it as well as I once could. My body that once thrived on the stress of a busy schedule, now shuts down at it. This week it hit hard. I felt like Wile E. Coyote who, when chasing the roadrunner, was slammed head on by an ACME eighteen wheel truck and flattened like a pancake in the road. In those old cartoons, Wile E. Coyote pulls himself off the road, looking completely dazed, and shakes himself to return to normal. I have spent the week pulling myself off the road, but I have found that I have yet to be able to “shake myself” back to normal. I’m not even sure all of me is off the road yet.
Tomorrow is a special event at our church. They are hosting a women’s day retreat. In past years, the women’s retreat has always been held over a weekend. That meant driving to some camp somewhere and spending a couple nights on a most likely uncomfortable bed and eating meals that someone else chose. I don’t really do overnight things like that very well, so I have never attended. I spend many nights in hotels. I seldom sleep well in a hotel with my husband with me, so I know I wouldn’t do well without him in a cabin type situation. I’m also a pretty picky eater. At least when I’m out of town with my husband, we go to restaurants he knows I will like. At an overnight retreat, one never knows what will be served. From past experience, it seems everyone thinks women’s retreats should serve quiche. Why is it assumed that all women like quiche?
Back to the subject at hand…
This year, when the flyer appeared for the women’s retreat, I saw that it was not an out of town overnight thing. Instead, it was a day retreat in the ministry building–five minutes from my house. I was excited to go. I have felt the need to connect more at church and knew this would be a good chance to do so. I checked with my husband and he said he thought I should go.
Guess who isn’t going to the women’s retreat though.
I simply do not have the energy to be gone another whole day, especially a Saturday. I’m not sure if I could get through the day without tears of exhaustion or frustration at my limitations. Another year that I feel as though I am missing out on something that has the potential to really help me grow more in Christ and possibly develop some friendships–friendships I desperately need now that we have moved and I don’t get to see the few friends I left behind very often.
People look at me and maybe think I am crazy. I look fine for the most part. People can’t see the constant shaking that takes place INSIDE my body. That is a very difficult thing to describe to people. People can’t see the struggle it often is to make connections to put words together that make sense. People can’t see the frustration that accompanies not being able to walk much of the time without some balance assistance. People can’t see that through my eyes, the world is usually spinning to some degree. People can’t see the level of exhaustion that often overtakes me. People can’t see that I need friendships even though I often struggle to make them because I don’t feel well or I have to cancel a get together.
I guess part of living with a chronic illness is learning to accept the difficulties it brings with it. I have tried to remind myself today that even though I won’t be going to the women’s retreat tomorrow, even though I really want to, God is still with me. He hasn’t abandoned me. He sees the shaking, the dizziness, the pain, the blurriness, and the heartache that comes with the realization that I am unable to do what I used to do. He loves me in spite of my tendency to sink into self pity mode sometimes. Tomorrow, I will try to think about Him and His constant love for and presence with me instead of the growth opportunities that I am probably missing. Come Sunday, it will be hard to go to church and hear the stories of all the wonderful times had the previous day. If I can make myself go, though, I will thank God for those who did grow through it and that I at least have the opportunity to be at church worshiping Him.
And I will probably have to ask forgiveness for the little pity party that I threw for myself.