I was born premature with jaundice and breathing issues. I spent my first days in an incubator. If I’d been born in another time or place I wouldn’t have survived, which might have been for the best, because my body seems unequipped for this harsh world.
During my first few months of life, I did not thrive. I lost weight instead of gaining it. My mom says after she brought me home, she felt her mothering skills were being judged by a health nurse who regularly visited to check on me because I wasn’t growing the way I was supposed to. She was told that her milk was inadequate and that she should try bottle-feeding me, but that didn’t work because I refused to drink out of a bottle. Then she was told to start feeding me solid food earlier than normal. Only then did I start gaining.
As I grew, I suppose I looked like a relatively normal kid, at least at first, and I ran around a lot outdoors on our own property with my dog and cats, but my body still couldn’t perform like other kids’ bodies could, which I learned once I started school. I remember at my first school Sports Day at age 6, I came in last in all the races. My mom was a volunteer helper and I asked her why I couldn’t run as fast as the other kids. She said she didn’t know.
Throughout my childhood, as well as the usual childhood illnesses (measles, mumps, chicken pox, pink eye, etc.), I had long bouts of bronchitis that didn’t respond to treatment. At age 6, my teeth were already so rotted I needed extensive dental surgery that I ended up being hospitalized for.
I was mostly pretty skinny, especially during my long illnesses, until I inexplicably ballooned at age 7. My mom insists I didn’t eat too much and there was no change in my diet or activity at that age, so she was baffled as to why it was happening and didn’t know how to stop it. She did get me to be even more active by buying me a bicycle and making me go on long bike rides, buying me a trampoline (which I loved), and enrolling me in gymnastics (which I hated), none of which made a difference. Again, my mom felt people were judging her, this time because I was gaining weight, when before it had been because I wasn’t.
Meanwhile, I was oblivious to what I looked like until boys at school started teasing me for being fat. I was finding school overstimulating enough without all that added to it.
Even before I’d started gaining weight, P.E. class was an absolute nightmare for me and in later grades consistently brought down my GPA. I was always picked last for teams, and for good reason. Not only was I physically slow, but my sensory issues (which I was unable to explain because at that time I didn’t realize that not everyone experiences the world the way I do) made participating in team sports difficult, as I could not quickly process what was going on to make instant decisions about courses of action. If a ball came towards me, I froze, unsure what to do. Then my teammates would yell at me that I sucked and I was a loser, which only increased the sensory overload I was feeling and added performance anxiety into the mix. Afterwards, I would think about it and know what I should have done, but in the moment, everything was a blur, there wasn’t time to process or think, and without having time I was useless.
Also, during our annual fitness tests, there were some things I was simply unable to do. One in particular was the flexed arm hang. As soon as they pulled the chair out from under me, despite my best efforts, I went down. I could not stay up for even one second. (I had no idea why at the time, but I will shed some light on it in my next post.) I was accused of not trying, and I often got “needs improvement” for effort on my report cards, one of many examples of how I was misunderstood. I truly was trying my best, but my body wouldn’t cooperate. Some of my P.E. teachers were quite horrible to me as a result.
I entered puberty early, at age 10. I immediately started having problems with my cycles and grew thick, dark facial hair. Again, I was utterly oblivious to this change until my mom told me and taught me how to shave daily. She took me to doctors about these issues, but they were of no help.
In my teens, I started having nausea in the mornings, which has continued to this day. I call it my morning sickness, but I have never been pregnant.
In my adulthood I have been diagnosed with polycystic ovary syndrome and hypothyroidism, both of which cause weight gain and fatigue, and both of which I’ve had symptoms of since childhood. I also have asthma, gastrointestinal issues, unexplained bouts of hives, eczema, psoriasis, severe pain with my menstrual periods (and sometimes similar pain at other times of the month), vomiting about twice a week, episodes of hypoglycemia, bouts of kidney stones (which is the worst pain I’ve ever felt in my life), and crippling daily fatigue.
Despite my efforts to eat a healthy diet (green smoothie, anyone?) — which I need to do anyway because of my PCOS and my tendency to gain weight — as well as having taken a much-needed course in stress management, I also have an inexplicably weak immune system. Especially when I’m in the workforce, I get every virus that goes around. At those times, a month doesn’t go by without me having a bad cold or worse. Since I can’t call in sick for a week or more every month, as long as I’m able to drag myself out of bed, I work anyway, so I can save my sick days for the days when I can’t drag myself out of bed. But then I get criticized for showing up sick and potentially passing the virus on to others. I don’t know what else I can do; I agree that it’s best to stay home when you have a virus, and it’s not like I enjoy working while sick, but I’m sick so much of the time that having a job at all means working while sick. That’s just the way it is.
I don’t get viruses as often when I don’t have a job, which is probably due to a combination of less exposure and being less run down from stress and lack of sleep. I tend not to sleep well when I have a job (I lie awake thinking about things that happened at work, and when I do sleep I have nightmares about work), which frustratingly is when I need adequate sleep the most.
Because of my illnesses, fatigue, spacing out, social issues, sensory issues, stress levels, and meltdowns, when I can get away with not having a job (meaning when my husband is earning enough for us to get by), I happily stay home. I like being at home, and my husband likes it when I’m at home, but unfortunately, I take a lot of flack from others who don’t understand or approve, and it’s hard to explain myself without just sounding like a lazy hypochondriac. The worst part is when people think I must feel entitled. That is not the case at all. I don’t think I somehow deserve to be looked after. That’s why in the past I did keep trying time and again. But in one way or another I crashed and burned every time.
To be continued in my next post.
P.S. Please, I respectfully request that no one offer me any unsolicited advice about what I should or shouldn’t be doing, what I should or shouldn’t be eating, what medications I should or shouldn’t be taking, or what home remedies I should or shouldn’t be trying. I’ve heard it all, read it all, tried it all (all that isn’t completely idiotic and that I have been physically and financially capable of trying, at least).