Fatigue and CMT
Manage it or it will manage you!
by Pat Lacoursiere, Canada

I began to feel really tired about six months before I was diagnosed with CMT. I could hardly walk a few steps without being exhausted. I remember it feeling like I was dragging around cement blocks on each of my feet. That is when I saw my family doctor and told him I wanted to see a specialist. I was working two part-time jobs at the time and our family was under a lot of stress with three teenagers in full-blown rebellion. I kept working but had to drop one job due to tiredness, and then the other job because I would collapse after a few hours of work and was unable to take care of my family's needs. Thankfully I am on a pension which helps with the financial stress.

For me it was essential to learn to pace myself, not easy but essential. You have to manage fatigue in your life or it will manage you. My energy is a valuable commodity, as valuable as money, and I had to learn to spend it right -- you may even say budgeting your energy into categories of importance. We all have different priorities and finding out what they are is very important. What energizes you? What lightens your load? What is fun in your life? What goals and purposes do you have? What hobbies and interests do you have? What are your responsibilities? What is really unimportant in your life? When you can answer these questions then you can take charge of how you are going to spend your energy.

For me, being a mom and in charge of the household, a lot of housework had to be done by others or just not get done at all. If I can afford it, I hire someone to do it. It can hurt your pride when you can't do all the things you used to do but that is a huge waste of energy too. I wanted the energy to be used in developing good relationships with my family and friends. My husband would help me with reminders to keep my energy for the good stuff. I also want to be there for my friends or community when they have needs and this often costs me or my family, but it is an important part of who I am. I am thankful that my family is very supportive in sharing me and my limited energy.

I find it challenging enough handling the loss of strength and mobility that come along with CMT but then you get hit with arthritis and numerous other physical challenges and you are at square one again. But this is our life and we must handle it the best we can. I am so thankful for my family and friends who are sensitive to my needs and desires and come alongside me when I need them, and to God who is always with me and gives me everything I need for every situation I find myself in.