The life of a chronically ill person (a spoonie) is one with many daily obstacles. It is tiring, tough, and often many have a hard time expressing their difficult journey. If you suspect this is the case for a loved one, please read on below to learn more about their life, and some tips on how to help. These are the things we wish we could say but often do not.
1) Their bad day might be a "Flare Day."
Flare Days are the days where your body cannot feel or function as it should. Maybe a joint is pained or out of place, or your medications are just not enough for the extra pain. Flare days are hard for us spoonies, and for those around us. Our patience may be short, or in some cases, the "human" part of us is broken. That might mean we need help from our friends and loved ones, to bring us water, medications, and snacks! While we cannot guarantee that our location will be convenient, most flare days are spent in bed, the bathroom, or the hospital — your help and compassion will go a long way towards our recovery back to our normal spoonie self.
2) Pain can fluctuate, and often it does without reason.
Lets talk about pain! While it is incredibly difficult to battle on a day to day basis, and sometimes it can sneak up on you. I have to admit that I can get caught in a pain flare and go down quicker than a sack of lead. However, what I also have noticed is that sack tends to take down those around you too. Caregivers burn out from physical, emotional, and mental stress is real. Pain does not mean that you have caused it, or can solve it. This is often painful for people to accept so it is important to practice self care! Both high pain and flare days must be met with a lot of self-care to keep your mental health better than your current state of physical health. Some ways to do that differ:
- Patients: Color in bed, watch Netflix, write, journal, plan your dream vacation, snuggle with pets, browse Amazon for ice packs, nap, and anything else that can help you rest and recover to your normal.
- Caregivers/Friends/Family: Go for a walk, get out of the house for a bit, take a yoga class, try something physical, meditate...
Remember everyone's level of illness is different and so are their capabilities, so if one thing suits you on the list that is in the wrong category, still feel free to try it if it is safe for you to do so.
3) Pharmacies can be bittersweet.
Sadly, my brother and I share a genetic condition that causes about 80 percent of our body to malfunction. Let me give you a purely numbers overview of my family's medical costs.
- Insurance for a family of three: $2500 per month
- Medications for two: $700 per month
- Copays (urgent care, ER, doctor, specialists...): ~$7,000-$10,000
- Hospital Admissions: Covered within our copay costs above
- Unreimbursed medical: Crutches, uncovered devices like iPads with accessibility and communication apps, braces, tapes, OTC meds >>>$2500
- Disease Destroyed Items: $3,000
- Surgery: $1,000
...and those are the basics.
Annually our costs add up to about $40,000 for the two of us. That's with the price of our insurance added in, but all costs are currently an estimate as last year without insurance its was $40,000 out of pocket costs. And we had a FSA (Flex Spending Account) of $5,000!
Pharmacies require a car ride, standing in line or waiting in the drive through, payment, stress, and lots of social interaction. Sometimes the pharmacy is just too much stimulation for a spoonie. This makes it a difficult task to accomplish, yet one that must be done.
4) Our diagnosis journey has left us with a list of "Stay Aways."
This one is simple. If a chronically ill patient says, "Even if I am dying do not let that doctor touch me." They are serious. Some doctors I have come across in my medical journey either are seriously antisocial, barely passed, or magically forgot what the word kind/compassionate means. Think of it this way... Who would you want to see?
- Provider A: "Your condition is stage one, and this nose spray will work in your brain to fix your ovaries." — Yes, really said.
- Provider B: Studied with the physician who created the staging criteria of the disease and how to effectively treat it. "You have stage four, let's follow the best protocol we can. You can choose the shot you prefer, once a month or every three months?"
Which doctor would you prefer? If you are like me, you probably chose Provider B.
Pro Tip: Bad experience with a medical provider? Call the number on the back of your insurance card when you leave. File a complaint, you deserve to be heard and treated with respect.
Spoonie Rule Number One: Your conditions make you no less of a person! If your provider makes you feel uncomfortable, threatened, that they are untrustworthy, violate your personal space (or "bubble"), yells at you, talks down to you, scolds you, treats you like a woman in a car dealership/mechanic, or in any other way approaches your medical care inappropriately, leave. GTFO of the office, the waiting room, etc. I have refused GYN exams because doctors have lied to me about equipment and belittled my conditions. I wouldn't take my pants off for them to do a exam and as I am a competent patient, I have the right to take me and my lady bits elsewhere for compassionate care and treatment!
5) And sometimes our medical equipment looks a bit weird...
My pharmacist called my spacer (the non-red pieces) the "Cadillac of Inhalers." If only he had seen the contraption I rigged up to put it on a lanyard for severe asthma days. Sometimes our gear looks out of this world but it does make an out of this world difference! Using my spacer helps get medication deeper into my lungs than with just using my inhaler. It saves a lot of nebulizer treatments!
When your skin decides to turn into a half dollar sized hive for no apparent reason, your medical grade skin equipment must be organized! Also consider versatility, for example, yes that blue wrapper is a tampon but after an almost three-hour nosebleed and an ER trip later, you are much better off for having that dangling out your nose than a bloody washrag/towel/hand/people... Tampon use such as this is ER nurse and OBGYN approved! (At least for me, please do consult your doctor.)
Or teenie tiny!
These accupressure beads are about 1mm by 1mm on a sticky backed thing. Rubbing them and others placed on my wrist helped get me through a flare of my gastroparesis. These points are often used by massage therapists and newborn parents for colic and nausea. My mom used to rub the spots when I was a child and had difficulty breathing and vomiting, as coordination is still not my strong suit and a paralyzed stomach is not good!
Or clunky and modified with straps from your purse because your skin is too sensitive for a sling (maybe that's a me thing?). ...But also a cute accessory!
"If you were younger we would give you a cast." I sprained my elbow grouting tile a year and a half ago, and was given this monster of a brace for the first two months of summer. It ate away into my skin so it had to be worn with a long sleeve shirt, which did not help many of my other conditions.
Yet Sometimes Fashionable!
I LOVE MY VOGMASKS! When my asthma resurfaced from childhood these cut down on my inhaler use from two to four times A DAY, to two to four times a WEEK. They come in all shapes and sizes, and now offer dual vents. KOOLMASK is also an option on Kickstarter. KOOLMASK is like a vogmask on steroids. It has a separate air filter that attaches to your hip and is small and compact. Through a tube and an airtight fit to its mask, you have your own 100 percent safe air all the time!
6) Our bodies do weird things fairly often, like this being a resting heart rate... 60 to 80 points above normal.
At 21 years old, 128 pounds, standing at 5'4' (1.5 meters), a resting heart rate that is normal and safe is within the range of 60-88 beats per minute. This one didn't make the cut. When I use my inhaler I need to sit down and check my pulse. If it's over 120 beats per minute I cannot get up until my heart rate goes down. #doctorsorders
Or you cough up fluid from your lungs in Anaphylaxis...
And everyone was wondering why I couldn't breathe... This was at the time when I did not have an epipen. But this came up after 100mg benadryl, 150mg of Zantac, some Zyrtec, Pepto, and my inhaler. Asthma on top of allergies to the world around me and food makes regular anaphylaxis turn into AHHHHH!naphylaxis.
7) Your grandmother is healthier than you are and has less doctors and daily medications.
Born in a hospital, gave birth to her two daughters in a hospital, appendix, two heart surgeries, a shoulder repair, and a elbow reconstruction and still SOMEHOW my wonderful grandmother is still going strong and moving along better than I am! Even her cane she uses on a bad day is smaller than mine! She likes to put my doctors in their place and I do the same for her! Spoonies unite!
8) When weather and environment changes, it's time for seasonally acquired injuries!
Wet ground, slips and falls. Ice on the ground, slips and falls. Leaves are not the only thing that fall during the fall, so keep an extra hand free to help your spoonie when out and about. This is the first time in three years that I have made it through October without an ankle sprain!
9) You are the human embodiement of Mary Poppins.
Either you are physically snapping and popping, or you have a magic carpet bag filled with the entire contents of CVS wherever you go. So no, that nickname, "The Walking Pharmacy," is a real thing, not a spoonie endearment. PS: Run out of tampons, or Advil? We could probably hook you up in a pinch!
10) You take awareness to the next level.
Writing for Vocal has helped me to become an advocate of my own self-care. I know that sounds weird for an awareness idea but think about it this way. On the entire day these pictures were taken, my illnesses were no longer invisible to everyone else. It took up about 80 percent of my skin to write them all down, and it felt so good to be recognized for the rainbow zebra that I am. I write because I can help others. Helping others helps me because I know no one else should suffer the way I had to before I got help. Every little bit of information you can spread, money you can raise, or mile you can walk goes a long way to finding cures for chronic conditions like mine.