Coming to terms

More specifically, how I’m not coming to terms. It seems that having to fight much harder for disability is making me more depressed, and I was already pretty depressed.

Interestingly (or maybe not), filing for disability and meeting with a lawyer and learning that I may not actually get approved for disability at all if I don’t manage my case right is putting me through another round in the fight against my denial.

I keep telling myself I’m not really that sick. That any day now, I’m going to go back to how I used to be. This past year in particular was just a weird aberration, easily explainable by other causes. My husband and others might say: yeah, it’s explainable as MS.

But I still have this thick, deep layer of denial, which apparently covers over another thick layer of denial. Ultimately, I want to say this is not only explainable by other causes, but controllable. I can make this go away if I try hard enough and I’m just not putting in enough effort. Not surprisingly, that kind of self-blame is not helpful at all.

Because the other fact that was buried deep under my layers of denial is that if this is not explainable as anything other than MS and I’m not going to get better and I can’t control this, the implications of what that means are absolutely fucking tragic.

If this is not controllable and I don’t get better, any dreams I had for a full-time career are gone forever. So is probably my hope of ever getting out of the lower income range. The peer I worked with at my short-lived full-time job last year was not very good at her job (case in point: she required 10 hours to write one 500-word blog post), but she just moved on to a higher-level job elsewhere as a content manager.

Meanwhile, I used to be able to finish a 500-word blog post in one hour, two if I was being extremely meticulous. But I quit and went back home to get disability. Now I write one or two freelance articles a week and that maxes out my capacity. I can’t even bake or make soap anymore without needing my husband’s help. Her career is just taking off as mine is fizzling out.

There’s also the fact that everybody and their brother wants to push a nutritional cure on me. Despite the fact that Dr. Terry Wahls had excellent results from following a very strict and precise nutrition plan that she designed to treat her MS, the success hasn’t been widely replicated. (There’s also the fact that in addition to following her diet plan, she had neuromuscular electrical stimulation, a treatment that the average person has no access to get.)

But because it worked for Dr. Wahls, a lot of people have this mistaken idea that there’s now a confirmed cure for MS. It doesn’t take long for that to turn into blaming the one who’s sick for not getting better. I spent long enough in the alternative medicine world that I am especially susceptible to this and it’s harder for me to be confident that it’s not the answer.

The flip side of that is that if you have MS and are getting worse, like I am, you’re responsible for not getting better if you don’t follow this extremely strict diet. Yes, diet matters a lot, and I have changed my diet significantly enough that when I slip up on it, I do feel much worse. Despite the substantial changes I’ve made in my diet over the past 18 months, though, my MS has still continued to get worse. Diet alone is not enough to make me better.

So while I struggle to come to terms with the fact that yes, I really do have this disease and no, it’s probably not magically going to get better, I have to find out what to do with the rest of my life.

I have to find out what my purpose is, my reason for getting out of bed each day. Faith is helping, but so far it is not alone in itself either. In that way, faith also becomes like the elusive “perfect diet,” the magic cure that I can’t ever pursue strictly enough for it to provide more than minimal to moderate relief. It allegedly works very well for others but not me.

I know I’m depressed now, in part because winter always sucks for me, even here in Texas. The longer and darker days have a negative impact on my mood. I am also dealing with a lot of legitimately crappy stuff right now, between my illness and the instability at my husband’s job.

But since I’ll have to see a therapist now anyway, maybe he or she can help me find my purpose, my plan B, my answer to the question of what the hell I’m going to do with my life next. Because I have to find something.

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