“Eclectic yet classic with a playful bohemian twist is how I would describe my style” – Alice Temperley
I will borrow Alice’s quote posted above to kick off this little write up. It’s five o’clock in the morning and I’ve been awake since 4:30. It is not uncommon for me to wake up once or twice a night but that is generally to deal with one of those aging things (increased nightly urination bouts) or to reposition from an uncomfortable position. However I generally get back to sleep quickly. I am not one to toss and turn for a long time before I get out of bed. I find it mentally frustrating and that is what was happening tonight.
The sky is still dark and one of the things about living 3500 feet above sea level is longer sun days. Usually, this time of year morning light comes early. However we are 6 weeks into the summer solstice and have begun the slow crawl towards the fall equinox so later sun rises can be expected. I’ve been up almost an hour and the blue is (actually a little grey) just starting to appear in the sky. May be an overcast day, I haven’t checked the weather yet.
Two potential culprits to be awake this early: 1. my chronophysiology needs adjusting or 2. the tautness of my shoulders are at a level of discomfort that is counterproductive to restful sleep. Years ago, when I was doing some sleep therapy, I often had to explain chronophysiology to my patients and how it impacted their circadian rhythm.
This changes as we age and often we have to adjust our body clock. It’s like a personal leap year, adding an extra day to realign time. Very few people function on the traditional 24 hour clock we are so use to. Some are on an 18 or 20 hour system, others a 22 hour system but very few people actually have a body clock that matches up to our traditional concept of a 24 hour day. Every now and then we have to reset that clock which may mean a change in sleeping patterns for a night or two. Just a scientific tidbit however I don’t want to bore you with science so lets to get to the meat of my early morning tirade. It is now 6AM and the sky is bright enough that I could probably turn off my computer desk lamp if I wanted but I might still stumble on the keyboard so I’ll keep it on.
The second options is my shoulders. The rotator cuffs in my shoulders are so shredded from years of misuse that I almost have Popeye arms. I have tendons that are bunched up more around my elbows and forearms than my shoulders. I notice this more when I have a lot of running around to do and have to transfer my wheelchair in and out of my car repeatedly. The video below should help you understand what I mean by transferring my wheelchair into my car and the impact on, primarily, my left shoulder.
The parents of a 19 year old wheelchair user had asked me if I could teach their son how to go about learning techniques so he could get his drivers licence (another small thing, try and find a driving program that has hand-controlled cars). So I had a friend help me make a short YouTube video on one way to load your chair into your car (I don’t use a transfer board). The more things we learn to do for ourselves the less dependent we are on others. However the more transfers I make into my car the more my shoulder reacts. That is the one this morning with shoulders/arms very taunt and feeling like what I imagine an out of tune piano chord would feel like.
Transferring my chair in and out of my car is hard on my shoulders so I try to keep it to a minimum. I am not one to run all over town because this item is on sale here and a different item is a better price at a different store, etc. I generally set my sights on a mall and do everything there. That minimizes the amount of times I need to load my wheelchair thereby cutting back on the wear and tear on my shoulders. However some days you just need to do things. Keep in mind one car transfer equals 4 wheelchair lifts.
Yesterday I had numerous errands spread around town. When you combine the amount of running around time yesterday and an attempted decrease in my pain management meds it becomes hard to tell. Yesterday was four different stops which meant 16 wheelchair transfers.
You combine that extra usage with the cut back in your use of pain management meds can result in poor nights sleep. This cut back is a reluctant choice encouraged by a judgemental medical system reacting to a community crisis. When what I call “legitimate users” get caught up in something like the current “opioid crisis” you are left with a medical system creating pressure based on the assumption that you maybe addicted to those slow release codeine you have been using for 8 years. Who knows, maybe I am but I do know they add to my quality of life. After all the pharmacy industry (to my knowledge) isn’t making these pills to create a social problem even though that has become a negative side effect. Anyway that’s fodder for a complete article from someone with a chronic disability point of view so I’ll leave it for now.
What I did pay attention to yesterday was the number of “small things” that I think everybody with a disability experiences daily but go unnoticed by the general public. I haven’t used my car in close to a week so it was in bad need of a car wash. So I hit the gas station, gas up and grab a car wash. I don’t know if you have noticed but full service gas stations are about as plentiful these days as live dinosaurs in Drumheller.
Twenty years ago as full service gas stations were slowly declining the government introduced regulations that required self-serve stations to provide service to disabled drivers. Unfortunately they failed to tell most service stations and those that do know tend to have an intercom system by the pumps asking you to buzz if you require assistance. Well by the time I get my wheelchair out of the car to get to that buzzer I’m already out of the car so I just gas up myself. A transfer I could have avoided if everybody knew the rules. I can work around that one, however I have quad friends that drive vans with lift systems so they can load themselves in and out of their vehicle.
Many of them can’t lift their arm high enough to hit the buzzer and lack the finger extension strength to use the nozzle. My point here is another of those “little things” where some regulation is taking up space in a manual somewhere and government is busy congratulating themselves for a solution accomplished for more inclusive living but in reality is never applied.
Next stop the pharmacy, but this issue isn’t exclusive to the drug store, when I went to pay for my items. I have noticed this in many retail outlets over the past number of years. Many stores have taken to fastening their check out ATM machines down so they are no longer reachable.
They are fine if you are standing there looking down at it and making your payment but not quite as user friendly when they are higher than the eye level of the average wheelchair user. There was a time when the clerk would just take the machine off the base and pass it down to you. Now they are on fixed stands which don’t allow them to be removed (apparently to keep people from stealing them, why someone would want to steal one is beyond me but there are all types out there) but it is one of those little inconveniences a wheelchair user faces everyday.
The bigger issues can be dealt with however it is the continual little things that add up everyday, things most people don’t even think about. Well the sun is now out, the sky is bright, the clouds have moved off and the weather news says it’s going to be a hot one so I might as well start on my day. To end on a positive note, don’t ever under estimate the power of a tweet.
I had waited patiently for some service from Sleep Country almost a month ago with a number of delays and excuses. My frustration finally bubbled over so I send out a tweet expressing my displeasure. Problem solved within three days with a pleasant tweet response from Sleep Country and yesterday I received a $100 gift card in the mail. There is a Sleep Country within an easy wheeling distance from my home so I see some new fitted sheets on the horizon this weekend. Have a good one…