When we see the early signs that daylight’s fading

…we leave just before it’s gone.

That’s an old Counting Crows lyric but it’s still oddly fitting.

You see, I realized that there’s no way my health is going to hold up with working full-time. Even though I have a short commute and even though I want to be working FT outside the home, those factors can’t counteract the damage it’s already doing to me.

Working full-time has made it really apparent that I am definitely in the secondary progressive stage of multiple sclerosis. I fit all the symptoms and honestly it makes it hard to work. I have to go to the bathroom twice an hour. My leg muscles are so tight that they hurt all the time, like a permanent charley horse. (Even my husband can tell when he touches my legs how tight the muscles are.)

In truth, despite all of my denial, it’s clear that I never fully recovered from my relapse last summer. My handwriting is terrible again and it’s physically painful for me to write. That’s particularly sad for me because I used to have beautiful handwriting and I don’t anymore.

My walking is still noticeably affected. I never regained all my strength in many parts of my body.

But working FT causes all of those effects to worsen and become more pronounced.

I think that’s due to the combination of stress, not getting enough sleep, and the string of really hot days, which makes my symptoms worse.

This is hard for me. I feel like people perceive me as a quitter, although I usually stay at a job on average for about two years. (Though I had the same freelance writing job as an editor for the natural food magazine for almost five years.)

I don’t want to quit. It feels like even more of a defeat because I finally achieved my lifelong goal of getting a FT writing job.

It seems almost tragic to have to give it up, especially after I waited so long to find it.

But my body and neurological system do not care about what I want to do. Right now, they’re sending me a very clear “fuck your plans” message and there’s nothing I can do about it.

My symptoms have reactivated so much since I started the job that it seems like just a matter of time until I end up in the hospital again. So this isn’t really a matter of choice. A month into the job, I am adapting worse now than in the beginning.

People try to say that diet will cure this (although there are remarkably few cases of people doing so) and I’m not giving up on that idea. But focusing on my wellness is key and it’s clear that it’s not really compatible with working FT.

I’m hopeful that I can go back to the earlier level of functioning I had before starting the job. I do acknowledge that I was perhaps downplaying a lot of my symptoms before. But I also know for sure that I felt a lot better.

I felt better, my relationship with my husband was better, I had more time with my kids, even my cat behaved better.

It’s true that working is making me less depressed, which is the difficult Catch-22 here. Being less depressed counts for a lot. But being sick is worse. And I’m no longer as cocky that I’ll be able to avoid a walker or wheelchair, which is terrifying. (I think my odds of avoiding that are better if I’m not working FT though.)

The good news, I guess, is that my freelance career was just finally starting to get to the point where I always wanted it to be. I had clients coming to me with work — and then I let it go so I could work FT instead. I still have clients coming to me offering me work, even now. So it should be pretty easy to pick it back up. I’ll just have to start filing quarterly taxes, which sucks.

With MS, you can’t really have it all, at least once you progress to a certain point in the disease. And since a couple doctors told me I was already secondary progressive by the time I was diagnosed, there’s not a whole lot that can be done to help me. Seeing as how I had what I now recognize as symptoms as early as 2002, getting a secondary-progressive diagnosis in 2013 and again in 2018 is plausible.

Instead of feeling like this is an unfair choice foisted upon me, I can be grateful that I have a skill I can do at home to earn money. I worked hard to establish myself and was finally starting to get freelancing right.

Although I don’t know how or when I’ll extricate myself from my job — or when I’ll stop feeling like a personal failure that my health wouldn’t let me do it — it has to be done. I have to pursue balance and do the things that will make me as healthy as possible. And unfortunately working FT just isn’t it.

3 Comments

  1. This was absolutely fantastic and I am glad you have realized that working full-time is causing you more problems. It is so important that we all put our health above anything and everything else. I am technically supposed to work full-time, but like you I noticed the damage it was doing to my body. I am trying to work 6 hour days five days a week. It may sound so easy to everyone, but it takes SO much energy. I am so glad to follow your blog and really look forward to getting to know you. I hope if you have not already checked out my site you will if you have time. I really try to encourage and inspire through all that I write. I hope you are having a good day!!!

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    1. Thank you! Yes, people never realize how hard it can be to work a full day when you have MS. Especially if you live in a hot climate like I do (I don’t know where you are). Getting into a hot car at the end of the day really wipes me out! Thanks for the follow and I look forward to checking out your blog!

      Liked by 1 person

      1. Oh my goodness these hot temperature are brutal!! I live in the south where it has been in the high 90’s with really horrible humidity. When I leave work at 1 or 2 in the afternoon, I almost can not breath getting into my car. I normally sit with the windows open for a short time to allow the a/c to start working. It really is horrible though!! I hope you have a great week!!!

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