Life with Cystic Fibrosis is both predictable and unpredictable. I’ve mentioned several times that my “pattern” was a period of medical crises followed by a period of relative quiet. That “quiet” period isn’t a calm walk in the park, but rather a journey of chronic issues that I manage daily.
Looking From the Outside In
The term “Invisible Illness” describes my CF perfectly. What is an Invisible illness? Also known as a “chronic illness or invisible disability,” an invisible Illness is one that isn’t apparent to someone just by looking at you. So many times, people may have looked at me and thought I was in a bad mood or being bitchy, or they might notice the bags under my eyes from a sinus infection or hear me cough, but for the most part, people may not have seen evidence of my condition like they’d see, such as crutches on a person with a broken leg.
Author, speaker and Lupus patient/advocate Christine Miserandino discusses living with an Invisible Illness with the need to “pay” for every daily activity with a limited number of resources. She shares a conversation held with a close friend who asked what life with the chronic illness Lupus “was really like”, which led to her writing her essay, “The Spoon Theory.”
“I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.”
Although Cystic Fibrosis is different from Lupus, and my particular case of CF is different from the next person with CF, we share many common challenges. I experience daily symptoms and need many treatments even when I am not experiencing an active respiratory infection or acute exacerbation of other issues.
- Frequent need to cough out mucus, frequently sending me to the bathroom or somewhere private
- Frequent intrusive coughing due to inflammation (not mucus)
- Asthma-type attacks that can last for hours
- Hemoptysis – bleeding from the lungs due to inflammation, infection, heavy coughing, medications
- Joint and muscle aches from medication
- Headaches, sinus drainage, and other symptoms due to Sinus disease
- Insomnia from coughing, low oxygen levels, pain, medication side effects
- Easily Fatigued – I need at least 9 – 9 1/2 hours a of sleep each night, I also need regular naps to both prepare for, and recover from, active days
- Low Oxygen levels with activity or sleep
- Burning acid in the throat and lungs due to Gastric Reflux (GERD)
- High Blood Glucose levels can cause sluggishness, blurry eyesight, nausea, sweating, extreme thirst)
- Low Blood Glucose levels can cause rapid heartbeat, sweating, altered consciousness, feelings of panic, dimmed senses (sight, hearing, touch)
- Pain, nausea, vomiting and gas due to malabsorption of food
- Frequent need to pass stools – sometimes 5 or 6 times a day or more
- Anxiety/Panic attacks
- Inhaling medications to thin mucus, open the airways, or deliver antibiotics as a preventive treatment
- Airway Clearance – I use the Vest for 45-minute sessions, 2-4 times a day
- Doing Sinus Rinses daily to clear mucus and reduce inflammation – sometimes it takes hours or rinsing to get large pieces of mucus out of the deeper sinus cavities
- Calculating medication needs – Digestive Enzymes, Insulin – based on what and how much I eat
- Taking medication to prevent or clear intestinal obstructions or side effects from Antibiotics requires quick access to a bathroom
- Managing the schedules of more than a dozen different medications around the clock, and making sure that I don’t take certain medications at the same time
- Testing Blood Glucose levels and treating with Insulin for CF-related Diabetes, several times per day (or more when levels are really high or really low)
- Treating high Blood Glucose with insulin and frequent checks
- Treating low Blood Glucose with simple sugars – anything you can get your hands on in an emergency
- Avoiding weather conditions that affect or exacerbate lung and sinus symptoms
- Staying hydrated and avoiding getting overheated due to excessive salt loss while sweating
- Having to rest proactively or to recover on physically active days
- Laying down with a heating pad on my belly when I have pain or discomfort
- Waiting for medications/treatments to take effect
- Meditating, sitting quietly, avoiding sensory input to ease Anxiety/Panic attacks
Regular Life Doesn’t Go Away Just because I am Chronically Ill
Of course, managing symptoms and treatments for CF wasn’t my entire life. I had what many would consider “gender stereotype” obligations, but not because I was the “wee woman at home”, but because I was home and Ken was away at work all day. I still had to keep the house running – cleaning and laundry (though I didn’t have much talent in those areas), cooking (which I LOVED), and anything else I could do, while Ken did all the physical, outdoor, and stuff I couldn’t do.
Where we lived in Northern MA, it snowed a lot. At any given time from November through April, there was 2 feet of snow on the ground and on the roof. We had to not only keep our driveway clear, but get excess snow off the roof so that it didn’t accumulate and cause the roof to cave in. In addition to his job – which paid the bills and kept my insured, Ken did all the physical work around the house, plus picking up whatever I couldn’t do myself, a list that was always growing.
During this period, we had several conversations about possibly moving back to Connecticut. The primary reason we moved to Massachusetts was for work, but now that I wasn’t working, we didn’t need to worry about the lack of writing jobs in CT. In addition, I was getting sicker more often. Ken’s commute to and from work was long enough, but when I was in the hospital, it was an extra hour round-trip, and any day that he visited me meant that he wouldn’t get home until closer to midnight.
Time for Another Move
With my family living at least 45 minutes to 3 hours away, and my sisters with very small children, we did everything ourselves. So we began to look for homes in Connecticut, and by the end of 1995, we found one. We also had put our home on the market – possible at the worst possible time, as the metro Boston area was feeling the early effects of the housing market crash.
We built the home with a developer in a newer neighborhood, which while it was exciting, it was a lot of work. We had many decisions to make, and ending up driving down 2-3 weekends a month to get things done. Thankfully, one of my sisters lived only 15 minutes away, so we got to stay with her, and the bonus result was getting to see her kids so much. We had to do each step as it on a schedule, which meant that I spent many weekends there feeling quite terribly. CF didn’t stop for anything.
We closed in the beginning of June, 2006, so we ended up moving before we sold our current home. Laws required we take residence within a certain period from assuming ownership of the home, so we packed up and headed back to CT while trying to sell our home in Northern MA. It cost us mentally, physically, and financially to get back down here.
We had many Open House events and dozens of showings, but It took until the last week of December for someone to make an offer. It was a lovely home, but the market sucked, and people didn’t want to negotiate. So we took a huge financial hit and cashed in anything we could to sign the dotted line before the end of the year. As of December 28, we finally only owned 2 home.
Everything Catches Up
The number and severity of life changes, along with the work to maintain my health and going in and out of doctor and hospital visits sometimes really gets to me. I’ve suffered from Depression and Generalized Anxiety most of my life. Many people with CF have similar problems.
Which Came First?
There’s a recognized increase of depression and anxiety in the populations of both Cystic Fibrosis patients and CF caregivers compared to the general population. Anecdotally, I’ve spoken to dozens of fellow CF patients who suffer from Anxiety and/or Depression, as well as diagnosed Obsessive Compulsive Disorder and other behavioral conditions. I have always been “emotional,” a “worrier,” and prone to bouts of sadness, but these episodes seemed more severe than what I observed in most other people. I recall looking in the mirror around age seven and yelling at my reflection, “I hate myself!!” I felt like a loser. Ugly, Stupid. Gross. Worthless. “Less than” in every possible way.
It didn’t matter if I earned good grades, learned new skills, or advanced my talents. Nothing I did would ever be good enough; forget about being “great” or “the best” at something. Nope, not me. These feelings of ineptness, poor self-esteem and self-loathing only continued with age. It peaked around age 14, when just about everyone was going through the typical awkward stage, but in my eyes, everyone else was smarter, more talented, stronger, prettier, skinnier, a better singer, etc. Better than me in every way. As I aged, and approached each milestone, I felt that I wasn’t where I should be at the time; I feared that I was always lagging. And truthfully, I was lagging.
Never Measuring Up
Growing up, me peers saw me as immature and naïve. Even friends laughed when I didn’t know what certain words meant or didn’t understand certain concepts. I didn’t go through the typical childhood development cycles of making friends, learning boundaries, and knowing how to interact in basic social situations. Partly due to parental strictness, fear of “something bad happening”, actual periods of sickness, and lack of access to new situations and potential friends, I didn’t do a lot of typical “kid” activities like town sports or peer birthday parties, etc. I was always out of the loop, and didn’t get exposure to cultural norms of the day.
Therefore, I always felt awkward. It continued well into adulthood.
I most often felt inadequate in any situation, lacking the confidence to lead, worried that I wasn’t taken seriously. Even though I succeeded in most of my jobs, and perhaps because I did well in my work, I didn’t want to rock the boat or advocate for the same type of promotions or recognition that many of my coworkers did. I couldn’t compete with others when it came to office politics. I feared failing, getting reprimanded, and getting fired. I constantly compared myself to others, and always found myself lacking. I worried about the day that people would eventually find out what a fraud I was.
At home, I never seemed to get things in order for any period of time. I panicked before making phone calls, having a list of errands to do, and anything that required a deadline of some sort. I began to dread things like repair appointments and having strangers in the house. I spent hours at night obsessing about things big and small. I had anticipatory anxiety about nearly everything. I was pretty bad at housecleaning, lacked attention to detail, and procrastinated. I just…sucked at everything. I must have said “I hate you” to my reflection hundreds of times in my life. “You’re fat. You’re ugly. You’re lazy. You’re stupid. You’re worthless.” Why am I sharing this with the world? Two reasons.
- I think it’s important for people to know that they aren’t the only ones struggling emotionally and mentally.
- People with Chronic illnesses like Cystic Fibrosis are more prone to mental illness.
Looking from the Inside Out
Everything came to a head sometime in 2006. Around the time of my birthday, which usually triggers anxiety and agitation, everything got worse. I had seen therapists on and off since I was 18 years old, but we had just moved a few months earlier and I had put my name on waiting lists with several different therapists’ offices. I had tried just about every type of anti-depressant, and was on one at the time, under the care of my primary care doctors.
Finding someone without personal recommendations was like throwing darts while blindfolded.
Finally, one night rather close to my birthday, I couldn’t take it any longer – the unfounded fear, the panic attacks, the sense of impending doom and deep depression took over. I was in a solid state of depression, and it seemed that nobody would help me. I asked Ken to take me to the Emergency Room because I became stuck.. I saw a Psychiatrist who put in a call to put me to the top of the “intake” pile, and the next day, I began a period of intense cognitive therapy.
A New Perspective
I learned a lot about what triggered my anxiety and panic attacks, how to recognize depressive episodes in the earlier stages (instead of months into it), and different ways to cope with acute episodes. I also learned some long-term strategies for coping on a regular basis, to help me keep my mind in a proactive, versus reactive, state. I spent about six weeks working just on myself, attending day-long classes and support groups to help me through this process.
Rebuilding myself from the inside out was sort of like building our new house – the developer created the shell, but everything else was up to us. My mental health was my priority. It helped me deal with all of my demons, even through the normally frantic holidays. I was making real progress, albeit very gradually.
A lifetime of problems don’t go away overnight. I had already spent 20 years investigating my past and my youth and everything else; now I had to work on reprogramming my brain. I had to stop the inner dialogue that put me down and instead use my brain to make positive changes in my life on an ongoing basis. It was a long, tedious process, but I knew that I needed the type of care and support I found there. For the first time, I focused simply on my mind, my thoughts, and emotions. I felt so lucky to have the resources to do so. From then on, I’d see life from a different perspective – a view just a bit skewed from how I used to look at everything.
I wasn’t looking through blinders or rose-colored glasses, but my own unique perspective. Some might say, the Pink Perspective!