I’ve been meaning to write my story on here, my journey of chronic illness – the me before, the me during denial & acceptance, and the me now, hopefully after acceptance. It’s been a long hard road, which no one knows how hard, with the exception of maybe my mother, lol. I’ve been way too mentally fogged, physically and mentally incapacitated, and scatter-brained to put my thoughts together to write this. The events surrounding my diagnosis are also a traumatic time of my life that I probably have a little PTSD from due to how society, doctors, family, and friends treated me because of the stigma against my diagnosis. It’s exactly like HIV patients and M.S. used to face. Up until the day the CAT scan was invented, M.S. was called “hysterical paralysis.” It’s easy to look back and think, “At least we know better now,” but what’s difficult to face is the fact that we’re still doing this with physical diseases to this day! So here’s my attempt to explain it to the world..it’ll be edited many times, I’m sure..
Short timeline for a quick read:
- Bit by a tick when I was a child
- Bizarre symptoms occurred we never understood, but still somewhat functional
- Increasing symptoms in my late teen years, becoming less functional
- Diagnosed with sciatica and gastroparesis at 18
- Diagnosed with M.E./CFIDS at 22
- Became disabled at 22, very dysfunctional
- Diagnosed with dysautonomia at 26
- Became more severe at 28, after pushing too hard to be more functional
- Diagnosed with Lyme disease at 31
Longer version of the story:
At some point in my childhood, my parents and I wondered why I got tired sooner than others. Why I couldn’t sleep. Why my room, car (once I drove), and appearance would be immaculate, beautiful, and organized for some months and then a disaster other months. Why I took short cuts for everything, seemed lazy, and seemed like, “She’s just no trying hard enough.” Why even as a child I would stare out the classroom window at the clouds some days in a haze and yet perform super well academically other days. Why I was so athletic, creative, brilliant, prolific, and cheerful some days and seemed like such a sloth, stupid, “depressed,” and spaced out other days. I just thought I was stupid. Seriously. I believed that I was the problem and that I was more of a failure than others. I never made a connection between any health issues and my exhausted behavior. I always knew my mom was different but never thought much about it. As kids we knew to let her sleep in the morning, that she fatigued easily, that she had arthritis and the cold hurt her, that she couldn’t remember what color someone’s hair was she had seen every day (memory), etc. etc. But I never thought much other than, “Oh, yeah, my mom has lupus.” I thought of myself as super capable physically. Even when I would have an off-month of struggling to do the very same athletics I had just been good at a few days ago. I played hockey, ran track, was in cheerleadering, was in dance, loved going to the gym so much, was a little bit of a dare devil, and enjoyed adventure and travel, etc. Even as a kid I preferred to eat healthy.
In college I was a health science major and ate very healthy and knew all about nutrition. I went to the gym many days of the week with intense workouts and was smug when I’d outrun my roommates. Then I would spend days in bed tired. I sometimes suspected I was depressed, but I did not feel depressed. I was just upset that I was “lazy.” I was raised with a very, very strong work ethic. And the U.S. has a culture full of albeism.
I got the A’s to get into grad school for occupational therapy in college. The summer before grad school, ironically, I fell very ill. I had just gotten all my vaccines (ahem!) to work a summer internship for my bachelor’s degree at a hospital in Dallas. Once in the internship, something felt wrong. It hurt me to go to and from the floors and units of the hospitals. I asked my coworkers, “Do you hurt when you push these heavy doors open?” They shook their head. My boss looked into my eyes and would ask sternly, “Are you high? You look high as a kite!” He was serious. I just blew it off and thought I was a weirdo. I was also taking a couple summer classes during this internship. I was stretched pretty thin and studying after internship work and classes (all 3 in different towns – home, work, and school). Nothing normal people can’t manage though.
Once the internship was over, I flew out of state to visit friends on vacation before I would start grad school. It was cool, beautiful weather at Six Flags and we hadn’t even ridden a roller coaster yet but were in a long line. I was so dizzy, nauseas, and my heart was racing faster than it did even during exercise. My friend had to keep catching me from stumbling over. “Do you want to sit down?” No, I said. During the roller coaster I kept passing out. After the roller coaster ride I collapsed in a friend’s arms. I briefly lost consciousness. They took me to a table to sit down and brought me water. (Many years later, I learned these are symptoms of dysautonomia/POTS). I let them ride the rides without me, determined not to spoil their fun, and when we got home I collapsed in bed and would not be able to keep my eyes open for a long time. This part is so hard to explain why it was one of the worst feelings ever. Still to this day when I get like this it’s very hard to explain (other people with M.E./CFS know what I mean). My friends brought me strong shots of Starbucks coffee, 5-hour energy drinks, Monster energy drinks, etc. I could not wake up! This was very strange. I couldn’t sit up in bed or move my limbs (sounds crazy huh?). I couldn’t keep my eyes open and when I did it hurt sooo bad mentally to do so and I couldn’t take in anything around me but could hear noise. If I heard any words they morphed with my dreams. I saw images around the room I was in when I would see the room. I couldn’t answer what they were saying to me or comprehend it. Why we didn’t go to a hospital, I’m not sure. I was a healthy normal girl, why go? And even with my high fever, mostly these symptoms were not your typical call-the-ambulance type symptoms. They were bizarre, you’re-a-weirdo symptoms. Lol. But yet they were agony, complete-hell symptoms. Torture. And I had gotten a lot more sleep than normal. I slept as much as I could and stayed there way longer than I should’ve in order to get back to grad school in time.
I arrived back in DFW TX the day before I was to start school. I was so not ready to start. I didn’t know my schedule and the very first professor I had was so disgusted with me for it. She branded me as lazy and told all the rest of the professors and administration that. When I would talk to the others, they even told me so and looked down on me. (Female bitchy gossip eh? Ugh.) She made my grad school stink. Everyone had loved me in undergrad. Anyways, grad school was a night mare. I did very well despite my illness and I’m damn proud of that now!! But at the time, I hated myself for what I could not do. I fell into a depression due to the limitations my illness put on me. I did not have moral support socially.
That first semester of grad school, my school health clinic diagnosed me for the first time with fibromyalgia and “chronic fatigue syndrome” (we prefer the term myalgic encephalomyelitis / M.E). My brand new symptoms I’d never had all my life were: intense pain all over with muscle spasms at times that would seize me up some days so much I couldn’t move that particular muscle of group of muscles, intense disabling “fatigue” (for lack of a better word) when doing anything at all, episodes of neurological paralysis, inability to shower myself most of the time (besides the fatigue, difficulty breathing, vertigo, nausea, dizziness, and feeling like I had a rubber band around my arms when I’d lift them, I’d pass out and fall in the shower and/or then collapse on the bed after the shower), insomnia late into the night, sleeping all day and not feeling refreshed, sudden extreme sensitivity to cold and heat. I had a severe case of what they call brain “fog” but that is a Horrible term because it was more like my brain had had a stroke! I would go to take a written exam and not know how to write, LITERALLY (that part is M.E./CFS). I would start a sentence and my hand would roll the ballpoint off the page and I couldn’t do otherwise. Very bizarre. (One of my written exams looked like a crazy person wrote it! That’s not me!) I spent all my time sleeping in my apartment bedroom and my awake hours studying. I tried my best to hide all of my symptoms from my friends and classmates and pretend like I’d be able to resume a normal social life, yet I could never get out of my apartment. I had a high fever everyday, sore throat, and swollen lymph nodes all over my body. I would be driving down a road next to my apartment I had driven down hundreds of times and suddenly not know whether I was on the right side of the road or not and would pull over to figure it out. I had seizures (syncope-induced ones from dysautonomia/POTS). I had tachycardy crises episodes and EMTs were called. I always insisted I didn’t need the hospital/ambulance. I couldn’t afford it as a working college student. I was prescribed medicines that made me much worse. I was thrown anti-depressants (so not helpful). My hair started falling out in chunks.
I was scared. I didn’t know anything about what I had been diagnosed with and neither did anyone else. There was no information on the internet back then!!! And the information that was on there was false because it was people pulling theories out of their butt that were not true (current research now says so). Most theories were that it was all in our head. This made me very sad. Was I crazy??? Was I lazy??? Everyone else thought so. My doctors told me I just had anxiety (I was on top of the world and happy with life when I fell ill, what??) and that I need to exercise more and eat healthier (no one did this more than me when I got sick, trust me). My family never acknowledged what was happening to me and especially not the gravity of it, perhaps the most painful and scarring of all of it. I know that’s airing dirty laundry, but it’s a huge part of my story. When everyone you love and respect thinks you are insane for something you are suffering terribly with and are disabled with, it is a big mindfrack. Imagine if you were on top of the world and your world was suddenly turned upside down when you lost everything you had worked so hard for because you were dying of cancer (one of the diseases that are socially acceptable, ahem!) and you had to stay isolated in your bedroom majority of your time and everyone told you it was your fault, you’re making yourself sick, you’re lazy and not trying hard enough, you need to just Snap Out of It, you are ungrateful, and no one would help you. It was terrible. The people that go through this, that are stigmatized and left to their own devices and are so confused, they go through hell. This is why our illness is not like other ones. It’s truly traumatizing.
After grad school, I could not be an occupational therapist, which I mourned the loss of for years. I was too sick to have a career. I had no clue what I was capable of doing now. I took a medical transcription course and began working at a medical transcription company. I got to use my medical knowledge and love of language. But desk jobs wreck havoc on a body with myalgic encephalomyelitis. The second most ill I’ve ever been happened when I worked at my first MT job in Austin. I had to quit due to health but it was just in time for me to move back home closer to family anyways. My brother so kindly took me in here in DFW. If he had not I shudder to think where I would be now – I can’t even type here about that part yet. Maybe another day. [EDIT 1 year later: Homeless is the answer; I’m now okay with saying I was homeless!!! For about 8 months I was hopping from motel to motel with a moderately severe neuroimmune disease! CRAZY and disgustingly sad!].
That time frame where I was working at an MT job in Austin, I began researching even more all about my health every chance I got. I learned so much and saw that the information on it had exploded since I first got diagnosed. Funny how people worship scientists as gods that actually have pure intentions to pursue the truth and help people. While many have good intentions to seek the truth, it’s also very untrue for many others. I too used to not realize this until I got my illness. We see such a wicked side of humanity when we have an unknown illness. You’d have to see it to believe it, trust me. I believe I’m now in healthy place with the acceptance of my whole ordeal. Grief is a cycle, have you heard? Denial, anger, depression, bargaining, and acceptance. I cycled through all of that over the last 7 years since I was diagnosed at 22 [now 8 years].
I always understate my illness when I describe it. So this story is an understatement – it does not capture the worst of it AT ALL. What I want you all to remember, the healthy ones, is that majority of the information you read on the internet about fibromyalgia and ME/CFS is wrong!! The info is either outdated or written by people assuming what they pulled out of their behind is true. For example, some doctors say the treatment is psychological therapy. Haha! Would you tell a cancer patient that? Doctors used to say 50 years ago that cancer was from repressed feelings. 99% of doctors are behind the times. You’re better off getting on the computer and reading the scientific studies yourself, because most of them sure haven’t been reading the up-to-date stuff themselves. Then print out what you learned and put it on their desk.
In 2013, the year I did all that research (and still Every Day!), I joined a bunch of support groups on Facebook and my mind was blown! I read people posting their symptoms and I said Oh myyy you have that too?! I had never met anyone with my health condition and it’s such a complex bizarre disease that I never pieced together all the symptoms until I joined in with others to piece it all together. We all were like Wow we’re not crazy! Like everyone thinks we are. There is a very unique symptamotology to neuroimmune diseases that popular media Never mentions. All they say is “pain.” Nooo, intense pain is the least of our problems. We are also suddenly stupid, senile, useless, “fatigued” people. We can’t concentrate (some cannot read these words). We stay up all night because we cannot get to sleep due to biochemical issues. Trust me, we’ve tried every thing in the book for insomnia – it aint changin! We stutter, to say the least. We can’t form a sentence sometimes. Or some with severe M.E. have not been able to say words for years (totally mute). I would walk up to my boss’ desk in Austin and stare at her with a blank look on my face and have no clue how to articulate what I was going to say at all, over and over and over. I couldn’t speak properly. There are also many comorbities to neuroimmune diseases, like cancer and endometriosis. The “fatigue” (lame word for it) is everyone’s worst symptom, they all say. Which brings me to my next point.
If I “just had chronic pain,” that might be easier to cope with by itself. I also have, for one, myalgic encephalomyelitis (M.E.)/chronic fatigue syndrome (CFS), which is perhaps even more misunderstood than fibro. It is not about being tired. That’s a slap in the face. It’s like what I described earlier when I went to visit friends out of state. Please know that most people with CFS/M.E. cannot work/are disabled, and about 25% are totally bedbound!!! See how that could be scary for me? 😉 Did I mention how HEALTHY I LOOK?? As everyone contrarily points out to us. (“But you look so healthy,” they accuse us. =P) Scientists now are discovering so much about M.E./CFS in scientific research. They know there is inflammation in the brain, for one. You guys can see my links about all of the research for my illnesses on this WordPress. I also have dyautonomia/POTS, as described before, which many people with M.E./CFS also have, and this is what caused the seizure and tachybrady episodes.
Many people diagnosed with a chronic illness look back and realize the signs of their illness over the years before they were diagnosed. Three of my first signs (besides what I just said about my childhood and teen years): 1) At about 16 I started having really bad chronic infections (sinus and urinary) that would not go away until I learned how to prevent them in my mid-20’s. I now know this is a very common sign of immune system dysfunction. 2) When I was 18 I had really bad cramps so I tried birth control (ever since then my cramps have been much easier) and my reaction to the b.c. was nuts. I’d have times I couldn’t breathe and was dizzy suddenly and my heart would race uncontrollably (that’s the POTS/dyautonomia part), etc. I suddenly needed physical therapy, anti-inflammatory meds, and muscle relaxer meds for sciatica, back spasms, back inflammation, and back pain. ALL of which I had never had before. I would cry in my doctor’s office to take me seriously because I couldn’t even drive anymore. My room suddenly started to become messy and I couldn’t concentrate on school. This only lasted a several months because all of the symptoms cleared up after I got off the b.c. I now know this is a very common sign of immune system dysfunction – chemical intolerance and hormone-therapy intolerance. I tried b.c. again a few years later to see if I’d have the same reaction and I did. I will never touch it again. I have had many bizarre symptoms to chemicals and medicines over the years since then. 3) Majority of people with fibro have some kind of gastrointestinal issues. Mine is gastroparesis, which is very common with POTS — my stomach and intestines move at a very slow rate, which I’ve had all my life but didn’t get worse until I was 22. I also have sensitivity to the chemicals in some foods, which didn’t start until I was 22 when I became severe in college. I usually feel ill immediately after meals, which didn’t start until I was about 27 when my POTS got worse…. I didn’t have the first 2 set of symptoms I just described again until 22 year’s old with the vaccines I got in college (for my internship, remember?), and after the vaccines I was never the same again and the symptoms have always remained, with flares of some times being worse than others.
Okay, this has fried my brain typing all of this, so I’m going to go get some water and do something else. Thank you so much if you read up until this point. I’ll continue/edit my story later. 🙂