Wednesday, May 14, 2008

The Wall

In my life before autoimmune disease, I remember feeling tired. Sleepy. Maybe even exhausted. As a young couple with three wild kids, jobs, and keeping up with life in general, there were many nights when John and I barely kept our eyes open over dinner at night. Moments after the kids were asleep, we were too. Although, with a good night's sleep behind us, we were able to head into the next day with renewed energy. 

The fatigue that many patients endure as a result of an autoimmune disease is an entirely different experience. 

For each of us, the symptoms of fatigue are varied, but the result is the same. Once we have lost our reserves of energy, we hit the wall. We go no further. 

When my energy stores have been depleted, it takes more than one good night's sleep to replenish them. Instead, I require several days of severely limited activity to slowly recharge my batteries. 

Sjogren's is not unique among autoimmune diseases to cause fatigue. Rheumatoid arthritis, Lupus, Multiple sclerosis, Ankylosing  spondylitis, and Myasthenia gravis are just a few.

The cause for this life-altering fatigue in these disease processes is not completely understood. But for those of us who deal with it routinely, the strategy for carving out a life with fatigue is simple. 

First, and most important, it is vital for me to take the messages that my body sends me seriously. I know that when I begin to perspire, and my face starts feeling ice cold, that my energy levels are dangerously low. If I recognize these symptoms early, and immediately rest, often I can avoid depleting my energy stores completely. 

Secondly, planning and pacing are vital. Activity periods sandwiched by rest times will allow me to accomplish more than plowing ahead with tasks while ignoring the signs of waning energy supplies. 

Third, I am learning to swallow my pride. I have learned to ask for and accept help. I also have learned that life goes on even with a sink full of dirty dishes, or an answering machine that gets the phone calls while I sleep. 

Make no mistake - I miss the days when I could manage working full time while handling the mom and wife roles as well. Those days are gone. But living a rewarding and full life is still possible. 

It just takes a little humility, a lot of support, and a great deal of prayer. 

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