Living With Chronic Illness

Our good friends in Idaho invited us to go snowmobiling in Yellowstone Park with them. We were really excited. We had never been. They already had the snowmobiles and their daughters were willing to babysit for us. We were ready for an adventure so we hopped in the car and drove to Idaho Falls. I had mentioned to my friends that I probably couldn't do anything really strenuous or stay on the snowmobiles for very long and I felt like they understood that I had some chronic fatigue and pain. (No one really understands it unless they have something similar or have a family member with it - but that's expected - why should they understand something they know nothing about?) We were up at the crack of dawn and at West Yellowstone by 7am. It was so beautiful and enjoyable for about the first 75 miles. As the day wore on and the temperature dropped, I kept asking, "How much further. . . I'm really tired?" And they would say it wasn't very far. At about 7 pm when I knew I had reached my limit, I found out we had at least 30 more miles to go . . . the entire trip was about 125 miles! The last of those miles were ridden on washboard roads, in darkness and bitter cold.

I held on the best I could and cried most of the way. At the end, it literally took 10 minutes to pry me off the snowmobile and carry me to the car. I had the strangest feeling that I might actually die. After arriving at their home and taking a warm bath, and pain medicine, I laid in bed awake. My husband was very concerned at the way I was breathing and grunting every time I had to move or take a breath. I finally drifted off and fortunately by the next evening I was feeling much better. That day though, was my introduction to what chronic illness was really doing to my body.

It didn't start out this bad - in fact it came on suddenly. I had a pain in my back and side and thought I had a kidney stone. Turns out it was Shingles. I had an internal kind that don't show up on the outside, so I wasn't diagnosed right away. Because of that some of the nerves coming off my spine were permanently damaged and that turned into a secondary condition called , Postherpetic Neuralgia (that's where the damaged nerves send constant pain messages to the brain) At the same time I had the Epstein Barr Virus (like mono) which caused the Chronic Fatigue Syndrome, Fibromyalgia, and probably was responsible for activating the Shingles in the first place. I now have added metabolic syndrome and degeneration of the spine. Just seems like one chronic thing leads to another. My adult life has been divided into "before mom got sick" and "now mom never feels good". I could go on and on about what an active lifestyle I led before but suffice it to say I was probably hyperactive in my approach to life and even perfectionistic in everything I did. And then EVERYTHING changed!

It's been fourteen years now. Fourteen years since I could go mountain biking with my family and actually feel good the next day. Fourteen years since I could clean my house and not be in severe pain. I can't remember what it feels like to feel really good. Fourteen years have marked the passage from living a healthy, active lifestyle to barely getting up each day, functioning at a minimum level. And then there's the depression that comes with chronic illness.

Needless to say this has been devastating for my family. It took about 7 years before I realized how much my illness was affecting them. A person with chronic illness always thinks about him/herself first. You're just trying to survive, wondering if this family vacation will put you in bed for a week or if that meeting you attend will make you too tired to cook dinner tonight. Everything was revolving around whether or not I felt good. I saved up my energy to do just barely what had to be done - in my home, my relationships and in my church activities. I finally put myself in their place and what a revelation I had. They too have lived with this for 14 years suffering right along with me. They suffer in a different way and yet it is still suffering. Since my realization, I try to do more with and for them but my offerings are meager and only a percentage of what I was able to do before.

It's been said that the suffering (if we allow it) will change us in ways that make us better people.
This reminds me of a parable by George MacDonald, paraphrased by C.S. Lewis in Mere Christianity.

Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of - throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were going to be made into a decent little cottage; but He is building a palace. He intends to come and live in it Himself.

And the process continues.

What I really wanted to write about is what the illness has done for me. I've gained a tremendous amount of patience, tenacity, non-judgmentalness (is that a word?), trust in the Lord, unselfishness, charity, faith, and hope. But as I began to think about what to say about what I've learned, I felt like the biggest hypocrite on the face of the earth. I'm not patient and I'm not necessarily a kinder person. I still question God and occasionally ask the question "why me - why us?" I laid in bed, unable to sleep the other night and wondered if I have truly learned anything valuable at all, and then the epiphany came. YES I have learned patience and many of the attributes that I want to emulate . . . I just haven't let them spill over into the other areas of my life. I practice them all the time when it's about my illness, but when other suffering comes (heartbreak over relationships, financial hardships, etc.) I haven't allowed all that wonderful learning to help me through the new pain. I thought, "I know how to be patient because I have had that lesson and here it is: 1. Trust in the Lord 2. In the heat of the moment stop and take a deep breath and remember 3. Let go and allow His way to be my way.

A question we always have to ask ourselves about any trial in life is, "Will I allow this to destroy me or make me a better person?" If I do the above 3 things, I will become a better person. There is no other option. This lets me have joy in the midst of all the pain. In fact, joy makes the pain (physical or emotional) go away for a time. The other day, I happened to be very emotional over some family happenings and at the same time I was watching my grandchildren. I was trying not to cry while interacting with them, but little three year old Trevin noticed my dried up tear stains and asked, "Grandma, why are you sad?" I replied that sometimes I just feel sad and he said, " But there are no raindrops on your face!" That was a wonderful moment that made me smile, give him a big hug and feel joy.