Look for simplicity in your life
by Kimberly Secretan, U.S.A.

Hi everyone, this is Kimberly Secretan. I live in wild, wonderful, West Virginia with my husband Eric and our two black labs, Charlie and Bessie. We have a 22-year-old son, Joshua, who lives in a neighboring town.

I am 42 years old and was diagnosed with CMTX1 in 1990, although I had symptoms for about five years prior to my diagnosis, which I received from Dr. Dyck at the Mayo Clinic. I am a manifesting carrier, which means that I have moderate to severe symptoms that include some autonomic dysfunction.

ne of the major symptoms that I deal with on a day-to-day basis is fatigue. Aside from foot deformities, I think this is one of the hardest symptoms for me to live with. Some days I wake up tired, and just the thought of getting up and going through the day seems unbearable. Thankfully most days I wake up feeling pretty good. My day starts at 4:55 a.m. when I get up to feed the doggies, set out a bowl of cereal and juice for my hubby and make his lunch. I usually have a couple of cups of coffee and watch the morning news. I have the most energy of the day in the morning so it is during this time that I do laundry and light housekeeping.

Last year, housekeeping became such a chore that I decided to hire a housekeeper to come in once a week. That was one of the best things I have done for my husband and me. I tend to get grouchy when I am fatigued, and just giving up this one thing has helped immensely. I also try to do most of our dinner preparation in the morning, so that all I have to do is put it in the oven to warm. I usually try to take a short break around 11:00 a.m. If there is shopping to be done I usually do it in the early afternoon. I have learned the hard way, to not do too much shopping at one time. Carrying multiple bags really wipes me out. It doesn't matter how heavy they are, it's the multiple trips between the car and house. If I don't do the shopping, I spend the early afternoon visiting with friends, reading, or working on a craft project. Usually around 3:30 I take a nap, which helps tremendously. It may only be for 45 minutes, but just this short amount of time gives me the energy to make it through the rest of the day. After my rest, I finish with dinner and any household chores that need completing. We usually sit down to read, watch television, or surf the net for a few hours and then it's off to bed by 9:30 p.m.

The reason I have gone into such great detail regarding my daily schedule is because it is so different from what it used to be. At the time of my diagnosis I was working quite successfully as a realtor. My days would start at the crack of dawn and most days wouldn't end until around 11 p.m. Along with a long workday, I also took care of a teenager, a house, animals and all housekeeping due to the fact that at that time my husband was travelling about nine months out of the year. He was a pilot for the National Oceanic and Atmospheric Administration. His flying would keep him away from home for up to six weeks at a time. This was between 1989 and1994. Around 1992 my CMT progressed to the point that I could no longer work in real estate and took a part-time job telemarketing for the American Heart Association. I went from a very good real estate income, to a $6 per hour part-time job. We had to sell our vacation cabin in the north woods of Minnesota, stop all unnecessary spending, and prepare to downsize our way of living.

I finally went through the Department of Rehabilitation Services and they trained me to use a computer and various types of software. This training took nine months, and during this time my instructors noticed that no matter how hard I tried, I couldn't increase my typing speed to over 35-WPM. I had severe neuropathy in my fingers.

What next? Social Security Disability. I had heard all of the horror stories of filing, but to my surprise my case was accepted on the first try. I think because I had tried rehabilitation to no avail, that it helped immensely.

In 1994 my husband was offered the opportunity to move to Silver Spring, MD and take a desk job for the first time in his career. We discussed it, and decided to make the move. I still believe he did it to spend more time at home with me. We are talking about a guy who absolutely loved flying into hurricanes and flying dangerously low into canyons in the Rockies, and I do believe doing anything that would fall into the category of daredevil. He was moving to go fly a desk. The move took a toll on me. Five days after arriving at our new home my vestibular system failed from peripheral nerve damage, and I had to spend about three months getting to the point where I could tell which way was up and so-forth.

It was about the same time that I realized I could no longer paint a room, unpack a box, or stand for very long without feeling totally wiped out. So in 1994 the fatigue had got to the point where I knew I had a real problem. My neurologist tried all of the different drugs that are supposed to help fatigue, but nothing has worked on a permanent basis. Each year I have lost a little more. I used to be very involved in various clubs and civic organizations, but one by one, I have had to give them up. I used to garden, and can our produce for the year. This year our garden will consist of a few rows, which my husband will plant and harvest. I once enjoyed crafting, but now find it very fatiguing to hold onto a needle for any length of time and have all but given it up. We have thrown out, sold, or given away almost anything that requires dusting or scrubbing. We recently replaced old carpet and tile with laminate flooring, and we are planning to put a very tight weave carpet in the family room. They are both easy to care for, and will help with the falling down situation. We are actually considering moving from the country and into town, so that we can be closer to doctors and shopping. It is very fatiguing to drive, and I have about a 45-minute drive each way when I go anywhere. This is not the lifestyle we would have chosen, but it's what we've got so we will do the best we can. Fatigue is a very big part of CMT, and must be dealt with whether we like it or

I am very fortunate to be married to a man who just goes with the flow, and still loves me with each change. I now enjoy reading, watching the birds at the feeders, and visiting with great friends. I have become addicted to genealogy as a hobby. I think everyone should have an afternoon nap. I thank God every day that I still have the abilities that I do have. My doctor has recently referred some of his CMT patients to me for information, and a shoulder to lean on. I'm very grateful to Linda and the CMT Newsletter and chat list for providing me with the materials, education, and resources to be able to help myself, and to hopefully help others.

Some of the things I have had to do or change because of fatigue include:

• Adding a stair lift to our home.
• Getting rid of unnecessary clutter
• Letting my friends know that I may cancel out on a planned activity at the last minute because of fatigue. This can be a difficult one, as some people may not be so understanding. I have lost friendships with people who could not/would not understand that this is a big issue for me. The good thing is, I have surrounded myself with a network of wonderful, caring, understanding people who like me for who I am and accept my limitations.
• Keeping frozen meals in the freezer or calling my husband and telling him to bring home fast food or if I have enough energy, going out to a local restaurant.
• Letting the dust build up and ignoring it.
• Hiring a housekeeper.
• Limiting my outside activities.

I have also found that when I'm fatigued, I tend to choke on my food and liquids. Liquids seem to affect me more than solids, but it can be very scary and embarrassing. I say embarrassing because it usually happens when I'm out for lunch or dinner. It feels as if something is caught in my throat or has gone down the wrong way. There have been a few times where it has completely blocked my airway. Fortunately most everyone knows the Heimlich Maneuver and this has always helped. I have had the Cookie Swallow Test and it has showed some very mild changes, but when I'm choking it doesn't feel too mild. During times of extreme fatigue, I usually just drink an Ensure for my meal. It is thick enough that I don't tend to choke on it.

These are just a few of the changes I've made. I should actually say we've made. My husband has been very supportive, and he is the one who keeps reminding me to take life easy and enjoy the simple things. Sometimes my mind still thinks that my body is healthy and I tend to overdo things. When this happens, I end up in bed for a few days recuperating -- not good for me or my husband. My advice is to look for simplicity in your life. If you can't afford paid help, look to volunteer organizations. Declutter your home. Keep your meals simple. But whatever you do, take time to take care of yourself. You'll be helping yourself, and those who love you.