On January 25, 2011, I wrote a blog entry entitled Historical Timeline of Symptoms, which described in great detail the various chronic illnesses and symptoms I've endured in my life, ever since I was infected with Lyme disease as a young child. However, I stopped short of detailing what my adult years have been like. Thus I've been inspired to write a similar, highly-detailed entry on my 20s. Incidentally the timing couldn't be better, as my twenties come to a close later this year. (Hopefully, then, I can say my health turned around dramatically by the start of my thirties!)
Before you start reading this post, I'd encourage you to read the one I link to above. It will help set the scene on what's ailed me, not to mention leads into my twenties in chronological order.
At twenty-one, fresh out of college with a bachelor's degree in journalism, I desired an adventure bigger than what my life could give me in Texas. Filled with bad memories, that state was only a constant reminder of ex-boyfriends I'd yet to get over, and my parents, who at that time were starting the divorce process. At that time, I was chronically ill with nasal "allergies" and "sinusitis", a sensitive stomach that caused bouts of nausea, and anxiety disorder that induced panic attacks. Furthermore, I was dizzy and light-headed on a regular basis, and frequently felt overly cold or overly hot (never a comfortable temperature).
Still, my health was stable, and doctors deemed me as "perfectly healthy", so I didn't let my malaise stop me from doing what I'd dreamt of doing: moving to California.
On February 7th, 2003, I pulled out of my parents' driveway in Dallas, my Toyota Camry filled to the brim with clothing, music, books, decor, and the most valuable of all: my two cats. For the next three days, I trekked directly west, then sharply north, until I arrived in the Bay Area. The drive was liberating, to say the least. Crossing state lines brought about a jubilant sense of excitement--I felt like I was Lewis and Clark, or an 1850 gold-rush miner, seeing brand new places and filling empty pages in my book of life!!
As is still the case, whenever I'm overly excited, flooding my brain with endorphins, adrenaline, dopamine and serotonin--yes, all of the above together like a stew--well, my chronic symptoms take a back seat. Perhaps that's why I consider myself such an adrenaline junkie. For those moments, I don't notice that I'm sick.
New chronic illnesses, some of which may sound laughable, started to creep up in my twenties. For one, I started to catch myself breathing very shallowly--quick, shallow breaths became my standard mode of breathing, with heavy sighs mixed in. In 2004, I saw a doctor about it. She told me it was just anxiety. (I've since learned that many of us Lymies share that common, bizarre manner of breathing).
I also started to notice, in my 20s, that my skin color gradually turned a slight hue of greenish gray, almost like a sage green, with undereye circles so dark that if I left the apartment without concealer under my eyes, people actually mistook the circles for bruises or black eyes. (Concealer became an absolute-must). Also related to my skin color, and in my opinion the most fascinating of all, my skin stopped having the ability to tan. Whereas I'd been capable of turning very, very dark bronze from childhood through my teen years, I found that in my 20s, no matter how much sun exposure I got--on trips to Mexico, Texas, or the Middle East--I couldn't achieve even half of the tan of the past. Nobody has been able to explain this one to me, so if anyone has an explanation, I'd love to know it. (I'm aware that our skin contains melanin which produces pigment, so perhaps a melanin deficiency is related to this?) Oh, and the sun also started making me incredibly weak. It got to the point a few times that I think I actually suffered sunstroke from minimal exposure to the sun. I'd also like to understand why that started to happen. I'm sure it's related to the Lyme.
Then other weird things started happening.... I started getting food poisoning unlike anything I'd ever had before. Up until my 20s, I'd vomited a number of times, all of the episodes being over soon after they started. But in my 20s, I've had a handful of episodes of vomiting that have lasted 8 hours or more and ended with me in the emergency room requiring i.v. fluids.
Then there were the bladder and cervical abnormalities. For several years, I suffered from non-bacterial interstitial cystitis, which means a whole lot of nothing really: the same symptoms of a bladder infection, but with no known cause. At times, the doctors found bacteria in my urine samples, but more and more often, they ceased to identify any bacteria. At 25, I had to get my urethra dilated because its narrowness was said to be causing the symptoms. It wasn't. And the urethra dilation didn't help. My pap smears also started showing up as "abnormal" due to unknown causes when I was about 25. Imagine hearing your ob/gyn tell you that your pap showed cellular abnormalities that, over and over, couldn't be determined upon further testing. It wasn't cancer, AIDS or STDs... just "abnormal" with no further info. Awesome.
Oh, 25 must have been the magic age for me! Because the single worst illness of my life happened at--you guessed it--age 25. I'm talking about mono. This one was the bin Laden of attackers.
When I say that mono nearly killed me, I'm not joking. It was unlike any flu or tonsil infection of my life. For three weeks, I was bed-ridden with tonsils the size of golf balls. The pain of swallowing was indescribable, and consuming food or beverages was a feat of Olympic proportions. I also felt a sharp pain in my arms and legs that I'd never felt before in my life. My eyelids and liver were among the array of body parts that swelled up with fluid, so I couldn't open my eyes all the way. Walking was out of the question--I had to crawl on the ground. My fever got so high I almost sweated through every layer of my mattress. I'd never felt so sick, or even half as sick, in my life.
A year later, when I had to get my wisdom teeth removed due to their impacting my molars, the gums absolutely would not heal. I developed what's termed as "dry sockets", a painful infection that exposes nerve endings in your unclosed gums where your wisdom teeth had once been.
As I write out all of this, I can't help but laugh. Maybe I'm the only one who's finding these bouts of this-and-the-other to be a hilarious testament to my body's inability to heal in a quiet, simple, intended manner, instead opting for the long and tumultuous road every time.
And every doctor I expressed my concerns to said, "You're a hypochondriac. Look at you, you're young, you're thin, you look fine. Stop obsessing." So, going off that logic, only old and fat people who don't look "fine" on the outside are sick?? Hahahaha. Yes indeed, all of this is making me laugh!!
Another thing is that my back constantly hurts, more muscularly than skeletally. Every time I'm on the receiving end of a massage, without fail, I hear, "Wow, you have a lot of knots in your back!"
The rest of my twenties were plagued with colds that would evolve into infections every time. Unlike normal people, my colds didn't just go away after about a week. They turned into bronchitis, pneumonia, laryngitis, and sinusitis, leaving me with several months of symptoms. And when I don't get at least eight hours of sleep a night? I inevitably catch a cold, which starts the cycle...
As for my energy? It's dimished a tad more with every passing year. I now desire little outside of the pleasures of staying in bed in my free time. Walking up a flight of stairs isn't easy.
A few years ago, before I found out I had chronic Lyme, I said to a friend, "Why do I feel like an old lady already? I'm always out of breath, always hacking and sniffling." I started joking to friends that I wouldn't live past 40.
Last year, a close friend told me, "Leila, I think you have fibromyalgia." A doctor echoed her sentiments. So I started telling people, "I have fibromyalgia." A young person such as myself gets embarrassed when I can't function like everyone else, so it was a relief to say I was diagnosed with fibromyalgia. (People then acknowledge that something is, in fact, wrong with you, and you're not just sleeping your day away from depression or laziness). Still, fibromyalgia is a symptomatic label, not a disease, virus or bacteria of known origin. When they found borrelia spirochetes in my blood this year, I finally could pinpoint the origin. In fact, many Lyme researchers claim that the majority of people with fibromyalgia actually have undiagnosed Lyme.
I've also noticed that in my twenties I started to despise big cities like San Francisco, with their crowds of pedestrians, traffic, hills (oh boy, walking up those hills!), and other distractions. The more "busy" my surrounding environment, the more likely my brain will stress out, then poop out and become fatigued. Well, I recently learned that there's a neuro-Lyme explanation for this that applies to most Lyme patients. Here's the best way I can explain it (sorry, I'm not good at technical explanations)--every bit of "noise" in your environment is a bit of stimuli that your brain has to process. Lyme brains and the central nervous system, by nature of the borrelia infection, are only able to process so much stimuli before becoming fatigued. And, when the brain becomes fatigued, all its other processes slow down. Imagine how many processes the brain is responsible for, and now imagine the havoc their fatigue can wreak on a body.
I wasn't wrong when I said that certain environments made me physically ill. It's not just a matter of taste anymore! I now have a scientific explanation for why I prefer tranquil settings like the countryside, and can only tolerate so much music or television, panic in crowds, and absolutely must live without roommates.
People can be some of the worst "noise", or stimuli, for me. Just being in the presence of another person stresses me out. It's almost like their energy field--the molecular energy their body comprises--swallows all my own energy. (There must a better explanation for this). As I've aged, I've become more and more of a loner. I prefer being anti-social, actually. Taking care of my garden, spending time with my cats, and surfing the web are all one-man activities that I thoroughly enjoy. As much as I love my friends (bless their hearts), I can only be around them very sparingly. Big house parties full of loud yelling, smoking people, bathroom lines, no parking spots, etc.? Forget about it. I'd rather pull hair out of my head. I cannot fathom what kind of joy people get out of those environments.
Anyway, sorry about that huge tangent I just went on. The point of this whole entry has been to say that my twenties have had many challenges, but now that I understand their cause, I'm starting to learn ways to better manage myself.