A Day in a Life with Autoimmune Disease

    Your alarm goes off and you lie there listening to it.  The buzzing is an annoyance and you are feeling a migraine coming on, but your arm has gone numb and you know the excruciating pain that will come along with reaching over to turn it off.  Eventually, you do it anyway.  This is a no win situation.

     After flexing each muscle individually to determine which ones are stiff today, you sit yourself up on the edge of the bed.  You slept like shit last night.  Your legs twitched for hours.  Every muscle contraction felt like a thousand bees stinging you from toe to thigh.  On top of that, your stomach disagreed with your choice for dinner and you had been in and out of the bathroom six times.

     You finally stand up because your bowels are telling you that it's ready for a seventh trip, but it takes you a few minutes to walk the ten feet to your bathroom.  It's not the muscles today, but the joints instead.  Your knees and hips moan, groan, and creak with every step.  Remember the Tin Man in The Wizard of Oz?  Well where is that bitch and her oil can when you need her?

     About an hour later, you have done the best you can to look halfway presentable.  Your child is up now and wants French Toast for breakfast.  You smile and kiss him on the forehead as you hand him the box of Cheerios.  "Today is a bad day isn't it mama?" he asks.  You just nod your head and fight back the tears.  You wish you could be a supermom, but you know you have to save up energy reserves for everything you have to do today.

     You drop him off at your mom's house.  You have to rely on family because you aren't able to work enough to afford daycare.  You can't wait for summer to be over and school to start so your mom can get a break.  You've needed her a lot lately, dropping him off sometimes for a few days.  There was a heat wave recently.  The temperature and humidity caused a disastrous flare of symptoms.  Your son hugged you and sent signals of pain throughout your body, so you yelled at him and he started to cry.  You didn't mean to, but flare ups mean irritability and uncontrollable mood swings.  And then comes the guilt and feeling of inadequacy.  This is a no win situation.

     It's off to the doctor's office.  You are on a first name basis with the staff.  Your test results came back normal, but that was expected.  These are "invisible illnesses" after all.  So your doctor decides to try you on a new medication.  "Just take these three times a day for two weeks and come back so we can discuss whether or not they had any effect."  Great.  That makes eight prescriptions you are currently taking, in addition to the over-the-counter Tylenol and the nutritional supplements.  You know that this one may or may not help, but you are worried about the side effects.  This is a no win situation.

     You get to the grocery store parking lot, only to realize that you forgot your shopping list at home.  You sit in the parking lot for awhile debating the pros and cons of going home to get it.  You finally decide to tough it out since you have to fill the new prescription anyway.  The pharmacy staff are on a first name basis with you as well.  You watch the pharmacist walk away and shake her head in pity as she goes to prepare your order and you begin shopping.  This takes you an hour.  You only needed twelve items.  And when you get home you realize you forgot the milk.  The whole reason you decided to go to the store today instead of tomorrow was because you watched your son pour the last of it on his cereal this morning.

     

     Your dad calls.  He wants to know if you've been avoiding him lately.  You tell him "no."  The truth is you've been avoiding everyone, especially those that give well-meaning but unhelpful advice.

·        "You should get out more."  (Getting out of bed is a victory)

·        "It's all in your head.  If you stop thinking about it, it will go away."  (Some of it is inside your head.  Those are the neurological conditions.)

·        "You look fine.  If you were really sick you wouldn't look so good."  (You wonder if you should walk around in sweats with your hair undone and no make up with a constant grimace on your face.  But then they’d say you look like shit all the time, so this is a no win situation.)

·        "Try eating better."  (You do, and pray that you can keep it all down without throwing up or having digestive disturbances later.)

·        “If you worked more or exercised, you would feel better.”  (You realize that most people think you are lazy.)

·        “Well, I’m tired all the time too.”  (You can’t believe that they think that their tiredness is even remotely close to chronic fatigue.)

You tell your dad not to worry, that you will come see him soon.

     You get ready for work and wish for the hundredth time that you could find a job other than waitressing.  Is there even one out there that allows for constant hospitalizations, weekly doctor’s appointments, swapping shifts with coworkers when you are having bad days and you can still make a hundred dollars or more in the five hours before your body gives out on you?  It’s not likely.

     Driving to work, you stop for two energy drinks, not that they’ll do much good.  You walk in the door and someone says, “Hey girl, you alright today?”  Crap.  You forgot to put on the fake smile.  You don’t lie.  You tell them how bad you feel.  You stopped lying to them after a breakdown you had in the middle of a shift one night.  They don’t understand but try to be sympathetic, at least to your face.  You accept that and muster through the shift.  It’s not a good one.  You have to ask for directions to tables twice.  This confuses the other servers because you’ve been there a long time and you really should know your table numbers.  You enter a table’s order into the computer, but you only ring in the husband’s burger and not the wife’s steak.  This is embarrassing because you can’t come up with a decent enough excuse for why that happened.  You bring Sprites as refills to tables drinking Cokes.  And you flat out forget that several people needed take out containers.  They call this cognitive dysfunction you are experiencing “fibro fog.”  What a cute name for something that seems so much like early dementia.

     Surprisingly, you still get decent tips.  It must be the knee braces showing through your pants.  But by the time 9pm rolls around, you are beginning to feel the pain that runs your life.  You beg to be “cut” for the night.  That means you get to clean up and go home.  Management won’t do it.  They think another rush of customers is coming.  By the time you are able to leave at midnight, you are limping.  It took you three times longer than everyone else to clean your section because you needed to move slowly and with caution.  Your feet and every joint in your body hurt.  Your hands had problems closing around objects.  And while doing your financial to turn in your money to the office, you kept transposing numbers, so it took awhile to get your papers balanced.

     As you were leaving, you overheard people planning to go out.  They stopped asking you to join a long time ago.  You get in your car and wonder if you can make it home without falling asleep at the wheel.  You call your mom to tell her you are okay and that you will pick your son up in the morning.  She tells you to take your time.  She knows how rough the mornings after work are.  She tells you not to push yourself, and to try and rest as much as possible.

     You get home and can’t wait to take off your clothes.  The fabrics irritate your skin.  You rub on hydrocortisone cream to stop the itch and sit at the kitchen table to take your medicines.   You debate between the muscle relaxer, the pain killer, and the sleep inducer.  You know the risk of taking all three.  As usual, you forego the sleep aid and opt for a cup of chamomile.  It doesn’t help.  You lie in bed and wish it would all just stop, and you could go back to being you again.  And you pray.  You pray to God that this genetic curse has not passed on to your child.  Or if it does, that he is one of the lucky ones whose illnesses are not always as bad as yours can be.  And you pray for a cure.  You pray that one day they will find a way to stop the immune system from attacking healthy cells so that everyone with Inflammatory Bowel Disease, Chronic Fatigue Syndrome, Fibromyalgia, Autoimmune Peripheral Neuropathy, Celiac Disease, Diabetes, Hashimoto’s, Rheumatoid Arthritis, Lupus, Addison’s, and the other one hundred or more autoimmune diseases, can live every day in a life without autoimmune disease.