I have no art to show you this week. Just as I had no blog to write last fortnight. I have been experiencing one of the worst flares I have had in a long time
Intense pain in almost every joint. My hands, my feet (wrists, ankles and individual digits), knees, hips, lower back, neck, shoulders, elbows, ribs, jaw…have I forgotten anything? Probably. I was literally incapable of walking, moving, thinking.
My eyes are also inflamed. I have scleritis. They were so painful and light sensitive last week that I had to keep them closed for a few hours per day.
I couldn’t hold a pencil for very long. But more importantly, I couldn’t create anything. Pain that mind numbing doesn’t allow you to access the creative corners of your mind.
Each morning I awoke, and I admit, I woke with hope. I am optimistic by nature. Only to hobble to the kitchen and take my slow release morphine and 10mg of oxycodone immediately. And then wait 30 minutes. I got out of bed 30 minutes earlier than usual, because while my children are older now, they still need some help getting ready for school in time for the bus. And they like me to make them breakfast, and we have it together, and talk in the mornings.
I like to keep up these rituals…I feel they keep us closer. So I needed that extra 30 minutes to allow my pain meds to work. To have any chance of functioning.
But last week I tried to be ‘normal’ but I couldn’t. I pretty much lay on the couch while they bustled around me.
My kids get frightened when I am like that. They are afraid that I will die, or never be able to get up and be active again. So I do my best to keep moving and look ‘OK’ at least until they get to school.
But I couldn’t last week.
Even with the morphine and oxycodone.
Without narcotics, I would have been unable to cope with that level of pain, in that many parts of my body. Narcotics are an essential part of my treatment plan, and the notion that opioids are too dangerous, and turn patients into addicts, is a topic that makes me furious. But that’s my next post.
What I realized last week on the couch, is that I truly never, ever again will be fit to hold down a normal job. To earn a normal income. To be a normal human being.
I should have accepted this years ago. My doctors have been telling me this for years. I persisted in trying to work part time, and finally when my marriage broke down, I applied for disability.
It wasn’t even difficult. I was barely questioned. I met the criteria so completely and easily. (Admittedly I believe the process is far simpler here in Australia than in the U.S.).
It actually shocked me how easy it was. I was telling myself still, after 6 years of autoimmune arthritis hell (at the time), that I would get better. I would get my life back.
Amazing the way the brain works. The optimism. The level of denial I was still in.
Last week I realized that, in a professional sense, I am worthless.
The mega-flare lasted five days. That’s five days I would not have been able to attend work, nor even work from home. Most weeks I have one or two knock down days. Where maybe I could answer an email or two, but not much more. Then maybe the other three days I could work three or four hours.
But I can’t say which days will be knock down days. Which days I could work a little. There are certainly times when I can be productive. But I can’t predict when.
I was a web developer and designer. I had the perfect skill set for working remotely. I had years of experience working independently. I really believed I would be OK. Optimist.
Would you hire me? I have run a small business. I couldn’t afford to hire someone with as many problems as me. Too risky.
Reliability is the first thing an employer looks for. No matter how good my skills could be, I would fail that first criteria every, single time.
I can’t promise to meet deadlines. Even if someone’s life had depended on me showing up at a job last week (which is ridiculous, I know) I could not have done it. So I would fail on that as well.
Good grooming. Well, I often don’t look sick. But last week I had a lovely red malar rash on my face. And my eyes were inflamed constantly. So I looked sick. I looked hungover, in fact. My eyes were so inflamed and puffy I looked like I was having a massive allergic reaction. Or that I’d been out drinking all night long. Not a good impression to give. So I can’t promise that either.
So what have we got? A skilled web developer and copy writer who can build you a great website. But I can’t tell you which days I’ll be available to work on it, or discuss it. And I can’t promise to get it done on time. And I can’t promise to meet you in person whenever you need to.
So where does that leave me? Pretty much poverty stricken. I have bills I can’t pay. My kids miss out on the things that most kids have. And there’s nothing I can do about it.
So what now? I have applied for early access to my superannuation. I also have a Total and Permanent Disability Insurance policy. Each of these will take months to be assessed, and success is not a given. I should have started the process a long time ago.
It’s a fine line between optimism and denial. This is one time where I where optimism wasn’t the best attitude.