Oh irony, you cruel bastard. For years, I’ve wanted a full-time writing job. When I moved down here from Michigan, getting such a job was my original goal.
Now that I’ve finally achieved that goal four years later, I’m actually not sure my health will let me do it.
My health is apparently considerably worse than it was when I last worked full time four years ago. So far I’ve had one night a week of severe insomnia during each of the three weeks since I started my job and end up with only two or three hours of sleep on those nights.
I always had insomnia about once a week when I worked full-time before, but my body was better able to bounce back from it. This time, I’m not bouncing back. Each time this happens, I get worse.
Up until now, I’ve been really determined that I would never need disability. That it was completely within my control whether I needed disability and when. And now I’m not so sure anymore.
I did a Google search on working with multiple sclerosis and this pretty mainstream Everyday Health article says an indicator of when you need to consider going on disability is when your job uses up all your energy, leaving you none for your family or interests. And…yeah, I’m already there. I hate to admit that in that regard, freelancing worked better for my health. It just wasn’t enough income. My family needed more from me.
It’s possible that my body just needs to adjust. I wasn’t on anything resembling a normal first-shift schedule before so maybe my body needs to get used to it. It’s also extremely hot right now, which is itself a risk factor for MS relapses.
I can feel that the heat is affecting me much more than it has in previous years. I think that’s because I’m having to get into a very hot car after work and wait for it to cool down — which doesn’t really happen for at least 20 minutes, at which point my body temp has already increased. My body temp doesn’t usually come back down for at least 6-8 hours.
My foot drop is now noticeable and pronounced; you can hear me coming down the hall. I run into walls and stagger like I’m drunk. My eyes have that glassy stare of someone who’s clearly ill.
But I don’t think my coworkers think I’m ill yet; I just think they find me weird. I don’t think they’ve noticed my health yet. And I’m already more than 10 years older than they are and can’t participate in things like team happy hours because I have to come home and sleep, not go out and drink. In that regard, I’m not fitting in with my coworkers again, just like at my last FT job.
So there are some independent factors that need to be tweaked and it may get better. But for the first time, I’m actually considering the fact that it may not. Even when I applied for disability before, I still didn’t know for sure if I could handle full-time work — especially if I got the right job.
Now I did get the right job with a short commute and my brain and body are saying nope nope nope. I literally cannot do anything other than work when I have a full-time job.
My husband seems to think that the right sleep hygiene will fix all of this, and I don’t know how to explain why I don’t think it will. It’s so much more than just sleep issues.
I don’t want to be this sick. And I don’t want these to be my choices. I get way too lonely when I work at home. I feel way too vulnerable being responsible for paying my own taxes. I hate the instability of freelance work.
If I were to get disability, it would not be enough to live on – and with Trump in office, I fear my social security would be garnished for my student loans.
But these might be my only options if I can’t adjust. This is already way too hard on my body and I can feel that I’m headed for a collapse before the summer is up, especially since it’s supposed to continue with the record heat.
I really don’t know what my next steps are if I don’t get better. I really thought I would sail right through this adjustment and just be super pumped about finally having a job that I liked. I thought that based on my past history, it was more likely that I’d get sick of the job at some point. That I would want to leave before I’d feel forced out.
But I’m not sick of my job. I really like it and want it to work out. And instead I’m finding that my body and brain have completely betrayed me and I don’t know what to do about it. Literally the only thing I have energy for is work and adding anything else on top of it makes me sicker.
I might have to figure out a Plan B. Hopefully I can get my taxes paid off and get a new mattress first if I end up being unable to do the job.
I’m determined and badass but I may have met my match.