It has come to my attention that even nurses and doctors are sometimes clueless when it comes to the reality of people of who live with chronic pain and chronic fatigue. Recently on Twitter a nurse posted that she knew when patients were lying about being in pain because real pain makes you unable to function. Of course fellow chronic pain sufferers responded with, “Are you serious?” Because there’s a huge difference between sudden pain and chronic pain. Sudden pain can absolutely cause you not to function but chronic pain, which is often the same pain but in longer bursts, forces us -especially women – to “just deal.” We grit our teeth, we get up, and even though it feels like our guts are being ripped out we continue on with our lives, sometimes even smiling. Some of us keep jobs like this but at the end of the day we come home with nothing left in us to go on. This is the reality of chronic pain and the chronic fatigue that goes with it.
Lately I have been getting myself back together and trying to be positive. I have made all sorts of goals for myself including to start cooking myself hot meals again. The problem is that by the time I am done cooking my hot meal my body is spent and I no longer have the energy or desire to eat. I still try, a few bites here and there, but in the end I usually go back to bed where I stay for a few hours or for the rest of the day depending on how bad of a day it is. And I know not eating only makes my fatigue worse but what am I supposed to do?! I do not own a Star Trek food replicator and I am WAY too poor to have a personal cook. So I am left on my own to deal… usually resorting to crackers or cereal.
And when I go in to the doctors to complain of fatigue it comes off rather flat. Well everyone is fatigued sometimes! What’s so bad about being a little tired? But it’s not being a little tired, it’s being completely sapped off all your energy always. It’s waking up with 15% battery and having to somehow make it last through the day. Able people know what fatigue is. It’s when you spend a very long day at work or dealing with a crisis that doesn’t seem to end. When you come home you shuffle in the door without picking up your feet, you’re beyond thinking because your brain has also had it, and you know the second your butt hits the sofa or the bed you’re not going to be able to get up. Now imagine feeling like that all the time. Imagine having a body that responds like that to something as stupidly mundane and simple as spending thirty minutes to cook for yourself. That is our reality. And it’s not easy, it’s torture, as most of us are also Type A personalities who desperately want to get something, anything, done. We’re constantly beating ourselves up about all the things we should be able to do but somehow can’t.
Currently I am trying to fight tooth and nail to figure out how to earn a passive income from home because I have no faith what-so-ever that our disability program here in the US will remain intact for the rest of my life. Just look at the deranged look in the eyes of politicians when they try once again to gut social security. That sort of blood lust to punish the weakest members of society is disgusting… and terrifying when you are one of those vulnerable members. But I have been working as hard as I can to find a passive income for years and so far I’m doing good if I get $4 a month. I added AdSense to my blogs, I wrote and published three books to date, I draw a weekly comic, and I have tried to have Ebay and Etsy stores in the past but couldn’t keep up with them. Now I am eying YouTube. Could I hack it? Maybe. But something has to give. I cannot tell you how anguished it makes me to know that I, someone with so many talents and so much to give this world, am only barely surviving and only because I live with my aging parents.
Currently stress and the arrival of the cold weather has knocked me down pretty hard. Yesterday was a good day, a really good day, and yet it was one that an able bodied person would consider a waste. Here’s how it went:
I woke up at 10AM after sleeping for ten hours. I was still so tired I barely could get out of bed. I fried myself an egg on toast for breakfast. This took so much out of me that by the time I ate it I still didn’t have any energy left to spare. I tried to write, or do anything on the computer but my brain was just playing a loop of static and my eyelids became too heavy to bear. So I took a two hour nap, got up, ate some cereal, and washed some dishes. This couldn’t have taken more than twenty minutes but I was down again. Another hour of two or resting before I got up to go feed my rabbits outdoors. This only takes a moment but again, totally drains me. Another long break. I cooked dinner after this and by then I was so exhausted I didn’t eat much of it. My stomach was rolling. Somewhere in my milder breaks I managed to create an illustration for my dream journal and write a blog entry. This is what I pointed to that night when I felt like I hadn’t done enough – which is usually the reason I don’t sleep well. I have intense anxiety about all this. It’s soul crushing. So that was my day – although I did get some things done I slept more than twelve hours, was lying down for at least four more, and sitting most of the rest of the time. Standing and moving was probably less than an hour. And that irritates me too. I don’t want to live out of my bed. I’m not enjoying the good life by lazing about, I literally have no choice.
And so that’s where I am at right now. I spend literally all my energy trying to be productive to get into a better station in life – and this has even been at the expense of having any sort of social or love life. It’s been six weeks since I’ve seen my boyfriend and he’s the only one outside of my parents that is left. His presence is undeniably good for me but I am always at odds with myself – wishing to spend that extra time on continuing my efforts to be productive. But I know that’s not living.
