My Illness is NOT Me.
I can pinpoint the moment it began. I was 11, we had just escaped from my abusive step-father and moved from the south to Connecticut. My mother, two sisters and I all lived in one room. It used to be the basement but they redid it. One door led to the laundry room, the other door out to the garage, which was only used as storage and all four of us shared it. It was a high stress time in my life. Between the abuse we had left and the struggle I was having being uprooted yet again, it really isn’t a surprise to me. I can recall many, many nights I was sick with “a stomach bug” while the whole house slept, if I woke my mom she got mad, so I suffered alone in the dark usually. Gradually I guess they stopped over time. I got through middle school and when high school came around the stress lessened and I found a nitch for myself.
It affected me in smaller ways then. My mother was too sick to notice or listen to the signs and I was too young to know any better and even though I might be dating myself we didn’t have the internet to look stuff like this up. When summer came and the weather got hot, I would not eat as much, I can’t eat when it is too hot. I was a vegetarian (fish/turkey) when I was a teenager until I got pregnant with my son and so I wouldn’t say I had food triggers back then. I was susceptible to being car/bus sick until I was around 12 but for the most part I was a cast iron stomach, eat what I wanted, ride this wild ride that makes most people puke kind of girl. As time moved on and I made choices that affected my long term health it became more apparent what price I would pay.
I have been incredibly sick for the last 6 years or so. Well I should say that is when it got serious again. It may or may not have something to do with the incredible amount of stress that step-parenting placed on me and mine. After years of struggle, too many hospital visits and stays to count, multiple ambulance rides, hundreds of different kinds of medicine, 5 sets of scopes, multiple test including CAT and MRI, one ICU stay, a blood transfusion, a surgery for something unrelated but was exacerbating my issue; I have been diagnosed with what is called CVS or Cyclic Vomiting Syndrome, a mitochondrial dysfunction. Basically, your body works overtime to overcome difficulty in converting food into energy, which causes a hypersensitivity in your system (sometimes even causes your system to shut down and refuse to move). There is no cure and little to no research. I will have it for the rest of my life and must learn to manage it. I carry the genetic markers for Crohns from both my parents and though I have not and will not develop Crohns, (according to my specialist) this is most likely the reason I developed CVS.
CVS has four phases:
- Symptom-free interval phase. This phase is the period between episodes when no symptoms are present.
- Prodrome phase. This phase signals that an episode of nausea and vomiting is about to begin. Often marked by nausea—with or without abdominal pain—this phase can last from just a few minutes to several hours. Sometimes, taking medicine early in the phase can stop an episode in progress. However, sometimes there is no warning; a person may simply wake up in the morning and begin vomiting. (has happened to me more than once)
- Vomiting phase. This phase consists of nausea and vomiting; an inability to eat, drink, or take medicines without vomiting; paleness; drowsiness; and exhaustion. (at my worst I dropped to 120lbs and I am 5’10”)
- Recovery phase. This phase begins when the nausea and vomiting stop. Healthy color, appetite, and energy return.
There are no triggers that I can recognize as far as food or diet, other than continued bad behavior will set me off (sometimes I get mad/frustrated and say screw it and ignore what I should do). For sure stress does it for me, and if I don’t get enough sleep, it is much harder for me to control as well. Migraine headaches will do it, they have found a direct connection between them.
Many people can identify a specific condition or event that triggered an episode, such as an infection. Anxiety and panic attacks are more common triggers in adults. Colds, allergies, sinus problems, and the flu can also set off episodes in some people. (So if my kids bring home a virus and I catch it – it can set me off) Others reported triggers include eating certain foods such as chocolate or cheese, eating too much, or eating just before going to bed. Hot weather, physical exhaustion, menstruation, and motion sickness can also trigger episodes.
Everything suffers, my internal organs wear from the weight loss and gain, especially my heart, kidneys and liver. My heart rate drops to the low 40s now during an attack (didn’t do that when this started but the wear has affected it) and they monitor me via EKG and chest sensors as routine – when I alarm they run in and make me take deep breaths and such. I have had adrenaline shots because it was low enough to freak them out, but now they just realize it is “normal” for me. My electrolytes are constantly low, all my blood panels are off including low iron, potassium and lipids. My veins collapse easily from all the anti-nausea drugs and potassium run through each time and so I have an average of a dozen sticks per visit. Someday I might have to have a PIC line. The vomiting is hell on my teeth, stomach and throat. I have had my appendix removed because the episodes would cause an attack even though there was nothing wrong with the appendix itself. I often don’t have the energy to deal with life or spend with my kids during these attacks and my step-kids didn’t give a shit or try to understand which only made them more frequent and stressful. My kids have learned to ask every day if I feel well and it kills me. They watch what I eat and worry all the time and they shouldn’t have to live like that.
But I am not my illness. I refuse to be defined by it. I have begun new techniques in my life for stress management, I have let go of the demand for control and found the more I relax about it, the less I fear. The less I fear and worry about it, the less I have an attack. I am currently four and a half months incident free. I do have a new specialist in Nashville at Vanderbilt who had been a Godsend. The new meds are helping and the new stress management has prevented at least 3 attacks before they barely got started. I am being wiser with my diet, and not wasting time “hoping” I won’t get sick but taking my meds at the first sign.
I have had 2 miscarriages while fighting these health issues. Now that they are handled, I’d like to start talking about trying again. We know the risk, we know the worry about my health in the after time but we are betting on the fact that I have always had UBER healthy pregnancies (anemia/dehydration issues with my daughter aside) as well as the fact that we know the triggers and how to stop it. Every day we learn more about it, the closer we are to solving it for good. Knowledge truly is power.
I share this my friends to point out that everyone is fighting some great battle. We may not talk about it much, mostly because it already takes up so much of our time and lives. Sometimes the bitchy exterior is to hide the pain. Don’t give up on others or yourself just because it got complicated. Be gentle with yourselves and with others.
Until we meet again, stay safe and be blessed