I’m fairly sure I have talked about this before. It’s one of the easiest ways to discuss what is going on for someone who has what is colloquially known as an “invisible illness.” Some of us may only be slightly affected on a day-to-day level, while others of us can struggle even with the simplest pieces of self-care.
Our society tends to approve of those who “succeed while overcoming huge obstacles.” This is actually a very good trend. It honors those who never give up, who keep striving.
But, our society also denigrates, derides, disparages and belittles those who do the exact same thing (i.e. never give up, always striving), but are not able to “succeed” in the way our culture defines it.
Even worse, unless someone can actually see our illness/disability, we are considered to be the scum of the Earth. We are assumed to be defrauding not only the social support net, but personally defrauding any person looking at us. (It ends up being the next step in the assumption chain – this supposedly disabled person is conning the government, therefore the government is giving them MY tax money).
Trust me, we ourselves are often criticizing ourselves just as much as any who looks at us. We’re telling ourselves that because we are comparably more healthy than some other disabled person, that we should forego that help from the government because someone else needs it more.
Hell, I even compare myself to my sister (defining her as “more disabled” than myself) because while she has an autonomic illness I “only” have depression, anxiety and chronic pain. I should, somehow, be able to do more than she does.
Obviously, she repeatedly smacks me up-side the head, like any good elder sister (no, she does NOT hit me, people…..this is metaphoric). For the first time in my life, I am actually taking the time and energy to heal. I know some of my illnesses will never go away, so what I am fighting for is a way to allow it to make a lessened impact on my life so that I can do more.
People tell me “you just have to build up your endurance.” Really? Were you aware that medical staff understands the difference in a pain chart between your average person and someone with chronic pain? In most pain scales, 1 means absolutely no pain and 10 means unendurable agony. In my pain scale? My one is the lowest pain I ever feel…..which on the normal pain scale is about a 4-5. My 10 is more like all my extremities have been torn off (or I wish they would be) and I’m bleeding out.
My endurance? For most of us, the ONLY patient type who might have more endurance than most chronic sufferers is a woman in the midst of a hard natural labor.
What happens is that if I do too many things (and my level of ability to complete tasks randomly changes on a daily basis), I end the day with what would be called in the Spoon Theory as a spoon deficit. This means I have to rest in order to make up for that spoon deficit.
Quick example here:
On Thursday, I had a follow-up appointment in Rice Lake (a town approximately 15-20 minutes east of us). It ended up taking twice as long as expected. I have what is commonly called white coat syndrome, which means that in addition to the energy expense for the appointment, I also am expending energy to keep my anxiety at a lower level.
Following that appointment, I had errands to run. To save gas money, we try to group errands along with my rather frequent doctor appointments. In this case, it was expected to only be two stops, one to OfficeMax and the other to Walmart. In between those errands, on a short smoke break, I contacted the gallery owner I am commissioning to sell my art. Unfortunately, there is a small issue with the art that required an item to fix it. I told myself that I would be able to find that item at Walmart. I was less than overwhelmed by the quality available of what I needed. And, when searching via the Internet in Walmart, I found that the exact item I needed was ONLY sold in the local OfficeMax. So, back there I trekked.
I recognized that I was tired when I got home, but at least I felt I accomplished something. But when I was woken up by my pug doing the potty dance (which includes sticking her face into mine, whiskers tickling up my nose), I ended up walking around the house like a zombie. Hell, I didn’t realize until just now that I had made coffee, but never remembered to drink it. So, I laid down on the couch to take a nap. Approximately 4-5 hours later, I woke up. I spoke to my sister for a while before she went off to her son’s football game. About 5 minutes after she left, I realized I still needed sleep. At least this nap was only 2 hours long.
This is fairly normal for me, actually. You never know from day to day how much energy your body is giving you, so you roll the dice when you have appointments and errands. And right now, given how I feel, I will probably be sleeping most of the weekend too.
Energy endurance. Yeah, that’s the trick. Except, even when I am exercising regularly (something I have not been able to do for quite a few months), I still get the random energy lottery on a daily basis. In fact, even though I am a fat woman, I LOVE water therapy exercises. I actually lose track of time when I’m doing them, especially with an iPod (or whatever) that I can use in the water. When I was doing it regularly in the Twin Cities, I often had to be chased out of the pool when it closed, because I had gotten lost in time doing my cardio exercise.
I haven’t been able to do the exercises, because the logistics didn’t work. The closest therapy pool is in Amery, WI. This is approximately 40 minutes away by car. And, due to it’s location, it can only be used for 1 hour at a time (I tried to reserve 2 hour blocks but I was denied). With only one hour’s worth of exercise and a 40 minute drive, the pain relief was completely wasted by the stiffness caused by the drive. Add to that the need to conserve gas, the logistics don’t work.
I have, recently, been looking into alternatives that will use less gas and will allow me to have the longer exercise time. Why? I want to feel better. I know it can be done. I have done it. I know exactly what it takes to be able to feel better.
But it doesn’t actually give me more energy endurance. Why? Because the chronic pain is not the only thing that sucks my energy away. The depression and anxiety that has been a constant companion for me for the last few years also sucks my physical energy. In fact, I had a recent epiphany about the depression and anxiety and how it affects me. Looking at the results to my neuropsych tests, and knowing my main issue is memory I have actually been able to understand when these things actually started, and it is NOT the moment I left my ex. It is only that it took the summer of 2014 for me to actually admit to myself that I was having trouble. I remember memory issues starting to show themselves somewhere around 2010-2012. That may sound odd, but the reality is that it is my short term memory (which includes short-term recall) is what is shot to hell. My long-term memory is fine.
So, go ahead. Judge me for my invisible disability. I will still be striving to have the best life I possibly can.