Too Many Moving Parts
“Someday, the universe will throw a wrench in the works and your well-oiled machine of a life will grind to a halt. And then it will keep going. Because after you got bored of crying and worrying, you took a deep breath and pushed it back into motion. “I”
― Nora McInerny Purmort,
I notice that we spend a majority of our time managing our chronic illness. Why? Because there are so many moving parts to being chronically ill. If you are not sorting medications you are making sure that appointments with doctors do not overlap or that you have time to get your physical therapy exercises into your daily routine.
To be honest, I don’t even remember to eat.
Being chronically awesome is like running a vast machine. After we are over the shock and dismay of that first part, that awful terrible gut-wrenching part, we get back to having to manage being “I”. We have many parts to keep in check and if any one of them is not performing at its peak, we begin to stumble.
Like many of you, I see multiple doctors. I have made it a point to have ‘Doctor Day’.
Because I drive to Los Angeles, about 50 miles, to see my doctors, it is a good idea to see as many of them on the same day as possible. That is Thursday.
Doctor Day became Thursday because I see my therapist on Thursday. What used to be a quick trip across town became a longer journey up the freeway to get to my destination, but she is worth it. I have a pain doctor not far from my therapist. I see my pain doctor once a month. My therapist is at 11 AM so I see my pain doctor at 1 PM. This gives me time to grab a sandwich and make it to the appointment.
On other Thursdays, I might go to my psychiatrist who is also in the area. I will see her at 12:30 PM. Not far from my psychiatrist is my general practitioner, and so on.
I think you get the picture. Many moving parts but I manage. Some Thursdays I have one appointment, sometimes I have two. I never schedule three appointments on a Thursday.
Medications are yet another moving part in the system. Another department to manage. So many doctors, so many chronically awesome conditions, so many medications.
We have to pay close attention to each doctor as they are sending our prescriptions to our pharmacy. Our doctors may be great but they are not infallible. I have three doctors that send medications to one pharmacy. That pharmacy packages my meds into tiny packs in a roll. All I have to do is take the next packs labeled for the day and date, open them and take what is inside.
You can imagine the complacency.
If my doctors send in the wrong dose or miss something, I might not notice. That is just as much my fault. We have to pay attention to each medication whether we are taking that medication from a bottle, a pill organizer, or a PillPack packet.
It becomes beholden on us to keep the doctors in line. I am chatty and we can be blah blah blahing away while my doctor is entering a prescription. I know I have been the source of error and I now double-check with the doctor and triple-check with the tech as I am leaving the office. I pour over the dashboard of my pharmacy’s profile page to make sure that all is well in the medication world for each of the three doctors that prescribe for me.
Do you have ‘stuff’? I have a lot of stuff to contend with. I have gear. Because I have EDS I have scoliosis and hyperlordosis in each part of my spine. I own two braces for my back. One is for my lower back and one is a full vest with a special shirt that I have to wear under the vest.
My braces are AWESOME at making the cutest outfit look ridiculous. Fortunately, I only have to wear them for a few hours a day. Truth told, during our recent 100 plus degree heat wave those braces got some time off for whatever recreational activities they perform on their own.
The back braces are not my only gear. I have the wrist braces and the ankle braces. I wear the former when I have pain and the latter when I am walking long distances and remember to wear them.
And the TENS unit with the box of electrode things. When the battery dies it is ridiculous to wander the house looking for a nine-volt battery. No one happens to have one of those laying around.
Elastic resistance bands and the inflatable ball-thing to sit on to work my core. Okay, the ball is deflated and I need a new one. I mismanaged that part and lost the plug. You are going to give me a pass on that one for the sole purpose of understanding exactly what this blog is about: this is simply way too much to keep track of!
Oiling The Machine
At first, this was very easy. That seems counterintuitive but when something is new it is really at the forefront of your mind. Keeping the machine running well when it is shiny and new, even if it is hideous, is easier.
As more is piled onto your daily routine and you have less room for the things you love the novelty wears off. Not that you liked it, but the newness that made you a go-getter with your care becomes routine and routine can become complacency and complacency leads to not wearing your brace or not paying attention to your medications.
Do I do my exercises every day? Hell no. Have I ordered that bouncy ball thing? What do you think?
Do I pay attention to my box of meds when it arrives? YES! I got lazy but I sure do now. My medication diligence reignited because mistakes were made. Mistakes are terrible ways to find out that not everyone is on the correct page of the chart.
Sum Of The Parts
You need to perform an inspection of all of the moving parts and make sure that nothing is being missed in your chronically awesome management. Only when all of the wheels and gears are turning together and all of the moving parts are tuned just right will you know that YOU are managing your care in the best way possible.
Afterall, in the long run, you are the one responsible for all of the moving parts. None of the parts alone will do you any good, it is when they work in a synergy that you have total management. Get to the sum of all of your moving parts and make yourself as whole as you possibly can.