I have a disability placard, two canes, and a walker. I have a pain doctor I see every couple of months, at least six prescriptions involving pain (four of which are opioid-related), three supplements specifically dealing with pain, a medical marijuana card, a TENS unit, heat packs, multiple braces, CBD topicals and edibles, physical therapy treatments, and several otc medications I use as well.
Yet, most people have no idea how much pain I am in on a daily basis. I only use the disabled placard when I feel my level of disability on any particular day necessitates its use if I want to get everything done that day. Even on the days I use the placard, it is unlikely you will see me using my cane or walker even though I may badly need them. I look like an able-bodied person to most people.
Why on earth won't I use my mobility aids if I need them? It seems counter-productive. doesn't it? However, when I use a cane or a walker, I am putting weight and stress on my wrists, elbows, shoulders, arms, and neck. I had double cervical disc replacement surgery two years ago and I have carpal tunnel in both wrists. While the surgery means I still have the use of my arms, it also means that certain types of stress and pressure to my arms or wrists cause me pain. To use my mobility devices to prevent pain, I have to cause myself pain.
My physical therapists have warned me about using my braces too often or for too long. On one hand, they will lessen the muscle strength I need to keep my joints stable to counteract the damage my hypermobility syndrome causes. On the other, they will reduce flexibility and motion in my hands, but they do help with pain and stability if used as prescribed.
The other thing the physical therapists have pounded into my head is NEVER limp. Ever. Limping causes so many long term problems, so even when the pain is bad, my goal is to not limp because while it might help ease the pain now, I will absolutely pay for it later. Even when my pain numbers are well above 5, I still try to do my physical therapy exercises every day through the pain because if I don't I won't be able to do anything very quickly.
All of the pain medications come with side effects. ALL of them have noticeable side effects that impact my daily life functions. I have prescriptions to deal with the side effects of some of my pain meds. Most of them impact my ability to drive safely which makes dosing medications dictated by my (and the children's) day's schedule more than by my pain levels.
What it comes down to is that on any given day at any given point you are seeing me at between a 2 and 7 on the pain scale. I am never not in pain. I am rarely not in pain that actively affects me even if I am on multiple medications for it. The pain makes me tired. I am also never not tired.
The thing is, I am just one person whose story you haven't personally experienced, simply one person who, from a glance, seems able-bodied and healthy. Any person you meet could be me. Any person you meet could have dramatic, life-affecting situations they are dealing with while smiling at you and chatting about the weather. Be kind.
