When progress isn’t progress

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.

7 Comments

  1. I know life with MS gets SO challenging and frustrating, but you my dear have a strength that is always within you! I think I told you before that I am pretty certain my MS has progressed and I am terrified to get this confirmed by my doctor that I can’t stand!
    On a different note, I am thinking about trying to get into freelance writing. Do you by chance have any tips on this?
    Please no matter how difficult things get, never give up hope. Sometimes it feels impossible, but it is in your heart!

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    1. Thank you! This is such an uncertain road sometimes.
      I will look up some links for you on how to get into freelance writing and get back to you (hopefully tomorrow.)
      I wish you peace and courage as well! We can fight this!

      Liked by 1 person

      1. You are welcome sweetie!!
        Oh my goodness thank you SO much Holly!!! I have been incredibly passionate about writing my entire life and really want to do something I am passionate about. I feel like if I could manage to do freelance writing, it could pay the bills and allow me to work from my home and not have to drag myself out to an office that I couldn’t care less about! I do have concerns about MS progression, so I am laying the ground work now for how to manage life! I really appreciate any advice you have, but please don’t push yourself too far. I do not want for you to over work yourself at all!!!!
        Girl, as a MS Warrior team we can fight anything!!!

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      2. There are a couple good links to help you learn how to get started in freelance writing:
        https://www.makealivingwriting.com/freelance-writer-get-started-guide/
        http://www.writersincharge.com (they also have a Facebook challenge group)
        Basically you just need to be published somewhere, so that people can see how you write. Having a blog is a good start! You could also try writing articles on medium.com. Blogging is actually how I got started in freelance writing way back in 2002 (I was ahead of my time with the blogging thing!)

        Come up with an idea for an article, send it as a pitch of how you would write it — don’t write the whole thing, just come up with the idea — and approach the editors at places you’d like to get published. Eventually, someone will take you up on it! You might want to also look up how to write a query letter, since that’s another name for the pitch letter.

        Another thing you can do is register at bidding sites like Upwork. You have to start out at lower rates there but with the more good reviews you get, the more you can make. But Upwork also takes a cut of what you earn. I am not generally a fan of Upwork and never found out how to make it work for me, but I have a friend who’s a freelance writer and has gotten all of her clients from Upwork.

        Let me know if you have questions along the way! This is just kind of an overview. 🙂

        Liked by 1 person

      3. Thank you SO much for this amazing advice and information! You really are incredible and I am more than likely going to have LOTS of questions. Even though I am sure along the way I will have questions, I promise to not bombard you with them!
        I really appreciate this overview! So having my blog is a good thing to get into freelance writing?

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      4. You’re welcome! And yes, having a blog is always a good thing to get into freelance writing. It shows people that you can write and that you can do so regularly. I’m happy to answer any questions you have along the way!

        Liked by 1 person

      5. Thank you again Holly, I really appreciate you! I am actually pretty excited to get something started with freelance writing!!!!! It is possible that this is the answer to all my dreams!!

        Like

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