POTS and Lyme: Sounds Like a Party

Except it isn’t. 

In an earlier post, I listed the stressors that keep me from writing, sleeping, sometimes even breathing (because panic rises, a tangible smog, that chokes the space between lungs and throat). The worst is chronic illness. Not my illness, but that of my sweet, smart, talented, creative, and incredible daughter.

Because of her POTS and Lyme (which is often not just one infection but a clusterF*#k of infections), she suffers fatigue so debilitating there are days when her greatest achievement is moving from her upstairs bedroom to the downstairs couch. Her muscles ache. Her brain fogs. She misses school. She misses friends. She misses… a lot.

I could write a book on the impact of illness on her life, but she is the better author of that story. Instead, I will write my story: being a parent to a chronically ill child.

Where to begin?

First, every day is an adventure. I don’t know how to plan my day because my child’s sickness plays a fickle game. Even across the day, fatigue and depression and pain and anxiety ebb and flow. Anxiety is my morning caffeine: is she going to school? Is she going in late? is she going in at all? In turn: am I going to work? Can I go in late? What do I absolutely need to accomplish today? What CAN I accomplish?

Second, helplessness is a new, unwelcome emotion. Friends, you know me–I’m the ‘can do’ girl who works hard to get what I want. Well, I want a healthy, happy, productive daughter. I work hard to make this happen: research, medical appointments, trials of medications and supplements and diets. Not including her primary care physician, she has three physicians. A phlebotomist comes to our home to draw blood for tests. Some symptoms improve, others worsen, new ones pop up.

And there are days when I feel an abject failure because I. Cannot. Fix. Her.

Third, worry thickens my brain. I cannot think. At work, many days I go through the motions. When my head clears, I research her conditions; I have become expert in traditional and alternative treatments for Lyme and POTS. Worry thickens my heart–I am not the friend and colleague and mentor I want to be. I cannot absorb other peoples’ problems, mine overfill my reservoirs. My inability to listen and hear others saddens and frustrates me, and adds to growing guilt I do not give enough. Worry and guilt wake me up too early every morning, and I lie in my bed until the roaring train in my head forces me out.

I write all this not for sympathy but for understanding. Why I am absent. Why I am not proactive in friendships. Why I am so quiet.

I need to do my work, because the only thing I can fix is my reaction to my now. Because I am a ‘can-do’ woman, I need to make sure my oxygen mask is in place so I can be there for both my children, my work and writing, all the people who grace my life. I have a toolbox, with lots of tools, which I have begun to haul out:

• Exercise: I aim to get over 50,000 steps a week, but that’s not enough; hence, Planet Fitness (I hate to waste money, so I try to go at least once a week). I found a muscle in my upper arm, a real benefit.
• Meditation: Every day, remember to breathe. Remember to come to my senses.
• Yoga: Two birds (exercise AND meditation) with one stone.
• Support: Yeah, I have a therapist. She listens to me vent, helps me strategize. But I need more, so I am looking for someone trained in Dialectical Behavioral Therapy (DBT) to help me achieve radical acceptance of my every moment.
• Medication: Nope. Don’t do antidepressants any more. But I do supplement my brain with GABA (for anxiety), and 5-HTP and l-theanine (for depression and sleep and brain fog).

I focus on my health so I can function. So I can live a better quality of life. So I can be compassionate to others, especially my daughter. To respond out of love and not fear, always.

Self-help is so important, even when we’re not challenged but larger-than-normal life. Tell me: what are your oxygen-mask facilitators?

Peace…