A Day in My New Life With Chronic Fatigue Syndrome

She lives her life these days, from doctor appointments to doctor appointments. This wasn’t always her life. Her past life consisted of accompanying her now deceased husband to his doctor’s appointments. Her life was becoming his life.

Just two years ago, she was a vibrant, busy working mom, with a burgeoning counseling practice and a fast paced career as a crisis counselor. Nothing could stop her. She did private practice on the days she wasn’t working at the hospital. She worked three 12-18 hour shifts, at various hospitals providing much needed compassion to desperate souls, assisting them in obtaining treatment for their oftentimes, desperate situations. But now, she’s come to a dead standstill. After contracting a rare lung infection while working at the hospital, health issues began to fall on her like dominoes toppling one by one on top of each other. She has been forced to stop working, only to find herself going from doctor to doctor in order to obtain the help she needs.

Unfortunately for her, just as with her husband, the doctors in Dallas were baffled as to what was wrong with her and how to help her. Her only choice-travel to Houston to see her husband’s doctor. He had been able to diagnose Tom’s rare illness — maybe he could do the same for her. And that he did. He also referred her to another specialist. Between the two of them, she found answers, solace, validation and some relief in her suffering.

Her days no longer filled with the satisfaction of helping others. She has had to learn the very difficult task of helping herself. That’s not something she has ever been very good at or comfortable with. It’s always been much easier to focus on others. But, left with no alternative and nobody to do it for her, she spends her days and weeks between doctor’s appointments, researching her illnesses, calling hospital and physician billing offices, insurance companies and doctors’ offices. In between, she rests.

Her life has become an escalator of ups and downs lived between doctors’ visits, but the regularity of the appointments brings a measure of security amidst the uncertainty. Until recently, she was driving to Houston monthly to see her two specialists. Now she goes every two or three months. This is no small feat. It takes all the fortitude she has to muster the strength to make the four and a half hour drive down I45 to Houston, knowing full well that the drive alone will feel like the same impact on her body as being run over by a truck. Her illnesses have left her with very little energy to do much, let alone make that long trek in Dallas and Houston traffic.

Psyching herself up to make the drive begins several weeks in advance. That’s the only way she can do it. She’s all too aware of the toll the journey will have on her body, but she also knows there is a two-fold payoff. There is the hope that the doctors will have the magic key to unlock the doors to her life again. And… she gets to spend time with her lifelong friend.

The trek to Houston is always the same. She leaves her home around noon or 1 p.m., always making the obligatory stop at Buccee’s in Madisonville, whether she needs to or not, then finally making it to her friend’s condo to spend the night. They go out to eat, share a glass of wine, process their lives and reconnect, although they are always connected through their deep-rooted friendship and their sharing of loss. They stay up way too late, get up much too early, say quick good byes and head off on their separate ways.

The fight through Houston traffic is predictable in its unpredictability. After having made it over the first hurdle, she forges her way to her first doctor’s appointment, where she waits with the other patients of last resort, who have come from all over, for hope and cures. She sits in anticipation for her name to be called. Her appointments are always two hours apart, in order to ensure that she will have enough time to see each doctor and still be able to make the drive back home that same day.

After seeing the first doctor, she goes to the lab to have the usual 10-12 vials of blood drawn. Then, it’s on to the next doctor. She’s like a walking zombie as she heads to the elevator, to go down one floor to the next appointment. She spends thirty minutes with this specialist who reminds her of the same things each time, asking the same questions, tweaking her medications and always offering a slice of encouragement in his empathy for her. He knew her husband. He knew him well. He has not only empathy for her, but perhaps even a small amount of pity. But she doesn’t mind, because he is genuine and caring.

After finishing with the last doctor, she heads to the parking garage, where, almost without fail, she wanders aimlessly trying to find her way out. She has no sense of direction on a good day, so after the brutality of her last 24 hours, any semblance of direction has left her. Thank goodness for GPS.
Once finally out of the maze of the garage, she is like a dog on a bone in search of the nearest Whole Foods. It is there that she finds the magic potion that will help her make the long journey home — iced coffee with almond milk and stevia — part stimulant, part placebo, part reward for her hard work and the hard work ahead. It’s the shot in the arm she needs to get her energized enough to make the reverse trek home. Midway, she of course stops at Buccee’s again. Once inside, she is amazed and overwhelmed at the number of people, the sights and sounds coming from every direction, beckoning her to buy, to try, to taste, yet resisting the urge to give in to the noise. She’s never quite sure if her stops there give her energy, or take it away. But it doesn’t matter, because it’s part of her journey, her routine.

She finally pulls into her driveway, usually five and a half hours later because of Dallas rush hour traffic. There’s no way to avoid it – she knows this ahead of time, so she’s mentally prepared. She drags herself and her suitcase through her front door, greeted excitedly by her faithful furry companions, Tucker and Bentley — a much needed welcome after the last 24 hours. She falls through the door, drops her suitcase and flings herself on the bed in utter exhaustion. She spends the next several days to weeks fatigued, weak, and aching, recouping from her expedition, only to begin again a few weeks later.

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Thinkstock photo by Archv