“No amount of sleep will reduce the fatigue that makes me feel like I’m walking around all day with one of those lead aprons that they use at the dentist’s office for x-ray protection.
— Tim, Phoenix, AZ
“…when I “wake up” in the morning, if I actually managed to get some sleep, I feel like I haven’t even been in bed. It’s such an overwhelming sense of exhaustion. Arms and legs feel like lead – and there is a sense of failure – even though you know this is not the case.”
— Crystal, Cleveland, OH
quite a way to start a post, i know. fair warning: this will probably be quite a long and rambling post. if you don’t have a cup of coffee in front of you, you might want to go grab one. the story may seem random throughout, but i promise it will all come together at the end!
so…it’s hard to know where to start, so i’m just going to go WAY back. somewhere around the time i was 8 years old, i began experiencing low back pain. my parents took me to drs. and specialists everywhere. since i was so young, i don’t remember a ton, but i do remember trips to special drs. who took x-rays and had me bend this way, and that way. this went on for years and years. we got answers like: “she has a bit of a curvature of the spine, but not enough that should cause this type of pain”, or “one leg is slightly shorter than the other…wear this insert in your shoe”. however, we never really got solid answers that solved the problem or relieved the pain. i saw chiropractors of every variety. the cracking kind, the deep tissue kind, the pressure point kind. they all offered limited relief.
i also seemed to be the kind of kid who was alway sick. it was always something. allergies, asthma, sinus infections, strep throat, etc. etc. in high school i experienced issues with TMJ. it got so bad that for several months my jaw was locked. i couldn’t even fit a spoon in the space i was able to open. i would have to mush my food up flat and eat it that way. i was able to get relief with a mouth piece that i wore when i slept. while i haven’t had it lock up like that since, i still experience pain occasionally and NEVER chew gum anymore.
i was always a tired person. i remember coming home from junior high and high school on the bus every day. i’d lay down on the couch and sleep until dinner time…every night. i think my parents and i just chalked it up to being a teenager and the rapid growth that takes place at that time. i was an early-to-bed kid. even in college, you wouldn’t find me up past 10:00pm. on the random night i did stay up later, i’d pay for it. not just the next day like normal kids, but for days after. i was just worn down. again, i just assumed it was the pressures of college.
after college i moved to the “big city” of minneapolis. i got a job at a design firm. it was here that i first experienced symptoms of iritis. the whites of my eyes would get red and painful. the only way i can explain the pain is like my actual eyeball was bruised. it hurt to move my eyes, they were sensitive to light, and it was miserable. i saw opthalmologists and was given drops. they never really worked all that well. again, since i had just moved to the city and started a job sitting in front of a computer for 8+ hours a day, i attributed it to that. symptoms would come and go for years.
as the years went on, i’d try and get my drs. to look into things more. i was convinced that all of these things were related in some way and that if we could just figure it out, things would be so much easier. i cannot tell you how much blood i’ve given over the last 26 years of my life, or how much radiation i’ve been subjected to with x-rays and MRIs. everything always came up negative. i was afraid i was one of those people that drs. would roll their eyes at.
after the birth of my youngest son, my pain became much worse. i tried physical therapy, acupuncture, steroid injections, and finally resorted to going to a pain management clinic; convinced that i was never going to get an answer and that i just needed to manage my pain the best i could.
then in august of 2012 i got sick with what was supposedly a sinus infection. (i still don’t believe that was the real problem) i was physically unable to make it through my days. exhaustion isn’t even a strong enough word to describe what i was experiencing. after 6 months straight of being sick, 6 rounds of antibiotics, a MRI of my sinuses, and multiple visits to an ENT specialist, i said enough. i reached out to my pain management nurse and told her that i needed someone to take me seriously. knowing that it’s not what they specialize in there, i thought she would be more likely to listen and not brush me off like other drs. seemed to.
i explained to her that after years of research online, i thought i had found a specific autoimmune disease that fit so many of the medical issues that i had experienced throughout my life. as i told her more, she listened closely and set me up with a referral to a rheumatologist in green bay.
i had my first appointment in mid-march. during that appointment, i told him all the medical issues i have had and am currently having. i did not mention the specific autoimmune disease that i had found because i didn’t want to sway his thought process in any way. at the end of the examination, he said the words i’d been waiting to hear for nearly 10 years. “we’re going to test you for ankylosing spondylitis.” then the heavens opened and the angels sung a hymn. that is the EXACT autoimmune disease i’ve been telling my drs. to look into for YEARS. i had about a gallon of blood taken and a MRI of my lower spine done. then, yesterday (may 1st) i went in for my follow-up to get my results. his official diagnosis: ankylosing spondylitis. (i’ll let you look it up, but long story short, it encompasses all of the medical conditions i experienced throughout my life. the pain, the jaw issues, the eye issues, the exhaustion, all related.)
it may seem odd that i would be excited to hear that i have an autoimmune disease. i get it. but, for 26 years of my life, i have been in constant pain. pain without explanation or successful treatment. trying to explain this to people made me feel like a hypochondriac. “so yeah, i’m in constant pain, always sick, and tired beyond exhaustion…..with no reason.” makes you feel a little crazy. i would honestly dread invitations to parties and events where i knew i’d be expected to be awake past 10:00pm. even if i didn’t drink at these events, i’d experience worse than a hangover. it would take me days, maybe even a week, to recover…..only from staying up late! crazy!
many people may be surprised to learn of this. i’ve heard from others before that they’d never guess that i was experiencing all of this. the thing is, talking about how much pain you’re in all the time doesn’t really make for great small-talk. so, unless you’re my immediate family, or a very close friend, you likely didn’t get the joy of hearing about it. i’ve heard things like “but you’re always so positive and happy!”. while that may be true, in most cases, you’re only seeing a small portion of my day. it’s easy to put on a facade while i work with a client for a few hours. it’s what happens when i get home that nobody sees. (except for my hubby and kids, who i owe the world to. they’ve all been amazing through all of this. my poor kids hear: “mommy’s not feeling good today” more days than not. hopefully that can change, and i can be a mom who’s more present in their activities.)
so, while the news isn’t what one would want, it does allow me to finally treat the condition instead of just live with it. right now that means new drugs, and a VERY strict anti-inflammatory diet. there is no cure for this disease, but with drugs and the right diet, i can decrease the amount of degeneration i experience.
if you made it all the way to the end, i applaud you! i’m not really writing this for anyone’s sympathy or pity. i’m only writing it so that the people in my life might better understand what i’m experiencing and why i’m going to be one of those “weird food people” and why i may be the first to leave the party. it’s really a hard thing to describe to someone that’s never experienced it. which brings me full-circle to the beginning of the post. when doing research, i found the two quotes i listed at the beginning of this post. they really sum up the way i feel physically, better than i ever could.
thanks for caring enough to make it to the end! <3