What 'I'm Tired' Means When You Have Over a Dozen Chronic Conditions
“I’m so tired” is the lingering thought in my mind. Though I long for a little rest and reprieve it doesn’t come, or hasn’t yet. Some distant echoes come to “get some rest” as if sleeping will help me feel better, but my weary soul knows better. This is a tired that little, if anything, can fix overnight. This is a tired that comes with illness. More than a dozen chronic illnesses, horrible flares resulting in hospitalizations and countless ER visits. This is a tired that comes with hearing, “I’m sorry, there is nothing I can do for you.” And being dropped like a hot potato by the very doctors who are supposed to be able to help.
Every morning I wake up and go through the routine of getting ready for the day. I get a bath or a shower, brush my teeth, do my hair, get dressed and I take my meds. Except, with chronic illness I’m unable to just swallow my pills so I crush them and flush them through my J-tube. Then I usually flush my PICC line and check my vitals, change my tubie pad and set up my feeds for the day. The whole morning routine takes two hours. Once ready for the day comes the doctor appointments. The phone calls. The countless frustrations of having referrals get lost or dropped or just be invalid due to insurance.
I’m tired of this routine but it’s not ending. I am a chronically ill young woman. I am a medically complicated zebra-corn who is in a constant battle to defy gravity. I am sick, and I’m tired of being sick, but there is no stopping or changing it. Only hoping the next referral will go through so I can find a new neurologist, geneticist, cardiologist, gastroenterologist, etc. who can help.
I’m tired of being a medically complicated zebra-corn in a state at the lowest percentage education and health-wise. Yes, I even heard a nurse tell me this state is lagging behind the rest of the country medically speaking. Tired is fighting years for a diagnosis and then being dropped by the very doctor who diagnosed it because they know just enough to diagnose, not nearly enough to help manage it.
Tired is hundreds of needles with terrible veins that are giving out – essentially losing places to be stuck with a needle that do not involve the neck or feet – then getting a PICC or central line placed and not being able to use it for very long. It’s fighting the insurance to keep a home health nurse who can come in and help maintain the line. It’s being caught without a nurse again and no one to help with the PICC line care then being told by the doctor they can’t help with the maintenance and I’ll have to visit the ER and then to have the ER nurse tell you that you can’t keep going to the ER for PICC line maintenance.
Tired is waking up in atypical anaphylaxis. Again. Which leads to another ER visit. Another doctor appointment. It is reacting to clothes, toothbrush, bedding, exercise and all forms of nutrition to name a few things. It is three-day hospitalizations followed by an AMA form to get away from the medical professionals of doctors and nurses who ignore you, berate or belittle you and hurt you more than help you. Then fighting with the nurse to get your personal Epi-pen and rescue inhaler back before leaving the hospital. It is fighting blood sugar levels dropping or sky rocketing due to poor nutrition and reactive hypoglycemia.
In my mind, and in my experience, tired is forcing myself to go to another doctor’s appointment even as my mind is screaming “abort mission” because this can wait a few more days. It’s rolling into the ER in my wheelchair, seeing the crowded waiting area and leaving to avoid getting a virus or cold. It’s medical or Vogmasks to protect myself from viruses and other things that would threaten my already sensitive health status.
Tired is fighting two dozen chronic illnesses (and counting) while also fighting for disability, fighting the insurance, being dropped by doctors and fighting to get in to see doctors out of state because this state is the lowest when it comes to education and health care. It is days in bed with Netflix, and rolling around in a wheelchair. It is feedings gone awry, working up to a feed only to have flares strike me down again. Literally, every few weeks. It’s malnourished, and dehydrated resulting in more specialists. “Hello, kidneys, nice of you to join in the fun next to the gallbladder, ovaries, uterus, stomach and bladder.”
Is this life with chronic illness? Well, it’s my life with chronic illness. It’s exhausting, and I just want rest, but I keep fighting, because this is what my surviving sounds like. Day after day, night after night of endless pain – emotionally, mentally and physically. This is me. A medically complicated zebra-corn, exhausted and longing for rest. This is me not giving up the fight, just buying myself as much time as I can get to figure out my mission in life. This is what being “sick, and tired of being sick” looks and feels like.
Exhausting emotionally, mentally, even physically. Frustrating. Feeling helpless or hopeless as if the evil scientist needed that extra boost to help rattle my emotional stability.
What does your “sick, and tired of being sick” sound like?
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Photo via Juliia Tochilina on Getty Images