Living with Master's Disease

Imagine yourself with moderate Alzheimer's disease with an occasional severe episode. It's very hard to concentrate, but you're doing your best. You have about thirty seconds to do whatever you're thinking before the thought is gone, leaving you with growing agitation. You also have a low immune system that leaves you susceptible to the slightest of viruses. Your body has stopped producing and absorbing the things it needs to function properly. The muscles within your body feel as though little teeth are chomping on them. Now, think of the thing you love to do most. Now, add pain that never completely subsides. Imagine that you can now only do this favorite activity a fourth of the time a year, at the most, instead of every spare chance you get. Keep in mind though, every time you take part in this activity, you will triple or quadruple the pain depending upon the amount of your exertion. You will then be bedridden for a minimum of three days to recover. A slight movement of your arm or leg will send misery throughout your whole body. Throw in some muscle spasms. You can't forget the tight, locked up muscles that make minimal movement a gut-wrenching chore. Blend in the nausea that always accompanies severe pain with the occasional debilitating migraine. Simmer with the insomnia that melts from the persistent agony. If simmered too long, you will experience frustration, anxiety, and depression. Suicidal thoughts are not unusual. Try your best to work through them. Top off with a loss of self identity and the depression it induces. You are off to a great start at experiencing chronic Master's Disease. Serve with a dessert of family members lacking in empathy, and you have just experienced the life of my husband, Greg.

He contracted Master's disease in 1998. Or so it seems. Doctors kept saying he was depressed. He kept saying he knew he wasn't depressed. He was diagnosed with Lyme disease on Easter of 2003. Three days and nights of fever that would not respond to Tylenol and Motrin, sweats, chills, and incoherent babble finally landed us in the Emergency Room of the local hospital. Later that year, he was diagnosed with chronic Lyme disease and Fibromyalgia. Last year, we were informed that for our region, Lyme disease is called Master's disease because it is similar but different from New England Lyme Disease. Whatever it may be called, it is still unpleasant.

Greg feels as though he is a thirty something year old man stuck in a very old man's body. My husband is not able to get up out of bed in the mornings until an hour after he has had his medications. While the medicines make the pain bearable, they do not completely stop it. For us, this is better than nothing. He no longer allows me to help him get dressed or put on his shoes. He wants to be independent or nothing. There is no middle ground for him. For him, it's an embarrassing fault. For me, it's helping. Sometimes he can't make that trip to town with me. Other times, he can make the trip, but he can't walk around in the store. Rather than use a wheelchair, he will wait in the car for me. I'm just happy to have him with me every chance I get.

Greg is allergic to the first choice antibiotics used to treat Lyme disease, so treating the Lyme disease proved to be more overwhelming and time consuming than we expected. A doctor had told us two weeks of antibiotics would take care of the disease. We were relieved that he would be well shortly. Unfortunately, it was not that simple. One week after completing the antibiotic treatments would repeatedly leave Greg sick again with fevers, sweats, chills, and the whole nine yards. We became frustrated. I was scared. What if it never went away? Two weeks and this was supposed to be over. It didn't work out that way, though.

After living with chronic Master's disease for years now, Greg and I realize that this is how it is probably going to be forever. That doesn't make it any easier. I talk to him many times a day from work. I worry about the next time he'll slide from depressing thoughts to suicidal tendencies again. Greg is still adjusting to the fact that he may never be who he was before. He is still searching for his lost identity. My avid outdoors-man with a driven love of hunting and fishing and anything outdoors has accepted the fact that in small doses he can enjoy these activities, but he will feel it for days afterward. As he says to me, he will pay for it. The muscled body he took so much pride in has dwindled away against his profuse protests. Years of weightlifting just gone.

One of the most traumatic consequences of Master's disease, I feel, is the loss of self identity. He's lost his ability to do the things he loves and things that need to be done. He also has lost the fulfillment of being a provider for his family. He is frustrated by what his role is now and where he plays into this life. He wishes God would just take him off this earth. He wants his pain to cease. He wants the burden he feels he places upon the children and me to be lifted. We want him to stick around no matter what, of course.

To look at Greg, you might not notice anything wrong with him if you weren't paying attention. He tries to hide the fact that there is anything wrong with him as much as possible. With a closer look you can see the flushed skin from his raised blood pressure cause when his pain is at its worst. You'll notice his steps when he walks are hesitant and the pain in his legs causes a quick, involuntary grimace across his face. I feel the muscle spasms as I lay against him in bed at night. Some nights I awake to the moans from pain as he rolls over in his sleep, or at least attempts to roll over. If it hurts too much, he doesn't make it.

Since that Easter morning when we finally learned what was causing Greg so much agony and grief, we have been very diligent about keeping our yard free of ticks. Whether he got the disease here or in Missouri, I do not want any of us covered in ticks. I check our children after they have been outside. We have deer, rabbit, and other wildlife that come into our yard. So, we protect our yard with granules that say they kill ticks that carry Lyme disease. We use insect repellents like Repel with the highest amount of DEET available when we must go into the woods or outside of the yard into any high grass. I pray for my husband to be healed. I don't think that Lyme disease or Master's disease is quite as controversial as it was in 2003 in our small town of 11,012 people, but I do know that people in our area aren't as informed as they should be.

Some family members are just unable to comprehend the pain and the strength it takes for Greg to take part in normal activities like the rest of us. Sure, he wants to be like everyone else, but has realized that is not an option. This is his life now. This is our life now. Together, we'll take a day at a time and make the best of it. I wish everyone would take a moment for precaution. It's better than a lifetime of suffering.