I’ve progressed in my illness, but it’s not a good kind of progress.
Now that I’ve bombed out of my full-time writing job and know that FT work outside the home is no longer an option that’s doable for me, I’m not sure what’s next.
I have no freelance work at all right now. I have a couple of recurring clients who could pop up again at any time and I can occasionally pick up a one-off assignment here or there. But for the most part, work just isn’t panning out for me right now.
On the one hand, I know we’ll be okay. August is a month with an extra pay period for my husband. If I look at the history of even our recent years, something always rescued us at the last minute, whether it was a whole new regular client or a big project from a former client or some other random, unrelated source of extra money.
But on the other hand, it scares me how incapable I still am right now. I applied for a new freelance job and got to the testing round, and so far it looks like I can’t understand the complicated instructions for the test. So that opportunity probably won’t pan out.
I bought web hosting to start a blog that I plan to monetize and I’m just drawing a blank on the first post. What seemed like such a good idea a few days ago now seems stupid and not even worth doing.
Is that defeatist thought part of the depression that comes with MS or is it reality? After all, depression is a bigger problem in MS than in any other illness, even cancer. And it’s the kind of depression that exercise and antidepressants don’t cure.
Maybe all of this is a sign that I’m not supposed to be working right now. The full-time job did take a considerable toll on me and I don’t feel like I’ve quite recovered yet.
We’re also still experiencing record heat, which is a known factor for making MS worse. And August is around the corner, always my worst month for relapses. There’s even one specific date in August that I try not to be too superstitious about, but it’s a date that has been pretty disastrous on 3 of the 4 years we’ve been here so far.
First, it was the date my middle son got hit by a car. Then the year before last, we were moving into the house we’re in now on that date and my car kept leaving me stranded and everything was getting delayed with the move. Then last year was my worst MS relapse by far, in which I was hospitalized twice for a total of seven out of ten days.
(Actually now that I’m thinking about it, I think I had a relapse on that date in the year when I thought nothing happened, and that’s what led to quitting my job in Downtown Dallas.)
Like I said, I’m trying not to read too much into it, but I’m giving that upcoming date the side-eye. Maybe nothing will happen on that day this year. But even if my stretch without work lasts that long (about 3 more weeks) maybe it’s meant to keep me out of harm’s way.
I’m trying to gingerly consider the topic of faith again and I’m not sure what I believe. The fact of my illness making me unable to work certainly doesn’t make a strong case for the existence of God. But I also don’t believe that illness necessarily has anything to do with God because I think it’s all random.
And at the same time, enough good and nearly miraculous things have also happened to make me hope that someone might be trying to look out for me.
Even in the absence of God or any kind of divine plan, it still makes sense to rest and have a lighter-than-average work (and stress) load during what is historically my riskiest time of year.
But there’s still that question in the back of my mind about when and if I should apply for disability. I’m stubborn, for sure, and getting disability is something I really don’t want. I don’t want to see myself as disabled and I think I might be more inclined to give up on myself if I have that label.
However, will my stubbornness ultimately make life harder on my husband? (I would say husband and kids, but knowing how long most disability claims take to be approved, the kids will likely all be out of school by then.) Even the small amount of earnings I’d get from disability would be better than the zero that I’m earning right now. And if I earn nothing, that puts more pressure on him.
I also can’t predict what the state of my intellect will be when summer is over. Right now, I can’t comprehend directions very well and can’t interpret scientific articles, which makes me feel really dumb. I can still understand medical articles, which is weird, but I think that’s just because that’s a very well-developed skill that created specific neural pathways for me. Reading them doesn’t require me to understand new principles.
But I can’t understand environmental science articles, for example. I used to be a lot smarter, so being able to feel what I’m losing is terrifying. It almost feels like being conscious while buried alive, like I’m screaming for help but no sound comes out.
I’m at the secondary progressive stage of my illness now, which means there’s no real treatment anymore. No IV steroids work for treatment (which I guess is good in a way, because they were very expensive) and none of the disease-modifying drugs work either.
But existing symptoms can come back and get worse, which is what I’m experiencing now. The symptoms may retreat when the trigger goes away. It’s possible, maybe even probable, that I’ll get my mental function back in a couple months.
It’s really hard to know what to do next about work. I guess that will depend on whether I get my full functioning back when the heat is over and if I manage to get some more clients soon. Taking a wait-and-see approach isn’t easy for me because I want to control everything now.