I didn’t sign up for this

I never wanted to be a disability advocate. Hell, I never wanted to be disabled at all.

When I went back to college, I did amazingly well. I had big dreams for myself that unfortunately weren’t able to pan out at that time, so I put them on hold. I waited through my kids’ childhood for the day when I could work full-time. And now it turns out that I actually cannot work full-time. I’m still struggling with the unfairness of all that.

At the same time, when I look back at it, I was sick during a lot of those years when I was at home, waiting for my turn to pursue my dreams. I know that the first time I visited a doctor about the headaches that just wouldn’t go away was when my middle son was less than a year old, which puts that in 2001. I had severe, chronic depression before that (which never really responded to any treatment, though I tried nearly every antidepressant ever on the market.)

Nobody ever diagnosed me with anything other than headaches and major depression. I didn’t know that other things I had like dizziness or occasional numbness in my feet had anything to do with it, so I never mentioned them. I chalked up a lot of my symptoms to “low blood sugar” despite not having any evidence of such.

I had periods of time in college where I was so ambitious to get my degree that I took more than a full-time course load and always ended up dropping at least one class because I couldn’t actually handle as much as I thought.

I remember one semester where I was really sick for months on end and nearly failed a couple of classes. I was just so tired that I couldn’t function unless I got at least 12 hours of sleep a night plus naps. I now see that was probably an MS relapse.

I only worked part-time or freelance pretty much the whole time we were in Michigan and I said that was because of child care needs. But now I wonder if that was actually the case at all. Once I was able to start working full-time, I still could only go a couple months until I had relapse symptoms.

In retrospect, it’s so clear that they were MS symptoms. But because nobody ever really checked for them, it just went undiagnosed. By the time I insisted on some answers to the headaches that wouldn’t go away and finally got an MRI, then it was diagnosable — at least 13 years after first having symptoms. And it was already so extensive that my doctors said it was either secondary-progressive at that point or it was some other brain disease.

I went back through some old blog archives I wrote at that time and saw that the first neurologist I saw thought I was secondary-progressive, but said she’d code me as having relapsing-remitting MS so I could still take the disease-modifying drugs. Because there are still no disease-modifying drugs that work for secondary-progressive MS (SPMS), that’s a label that probably isn’t too useful to neurologists. There’s not much that can be done by the time you get to that stage.

But I held on to that hope that “it could be some other brain disease that’s worse than MS.” For some reason, I thought that would be better, and for the life of me I can’t remember why I thought that.

My hope that I’d be diagnosed with some other weird brain disease that was equally hopeless but more rare than SPMS led to a long path of ruling out pretty much everything else. Unfortunately I had one neurologist in Michigan (who turned out to be in late stages of brain cancer while treating me and died soon after) who was more than willing to play Dr. House with me, exploring all kinds of possible diagnoses.

She finally concluded that I had a hole in my heart called a PFO that caused me to have tons of tiny little strokes, so many over the years that it essentially destroyed a lot of my white matter.

But she based that on the findings of a cardiologist’s test and I’ve since found out that most of the doctors in the small town in Michigan where I lived weren’t the best. (If you were a highly-skilled doctor who ranked near the top of your class, would you want to move to a small dying Rust Belt town with a high poverty rate?)

I’ve since had that heart test repeated by two different doctors down here and both found that I do not have a PFO. The loss of white matter was not due to strokes. I liked that doctor in Michigan for her willingness to explore every possibility, but it really delayed me coming to terms with what my illness really was.

That said, though, if I had known what my real illness was back then, I might not have had the courage to move back to Texas. Coming back here alone and saving enough money for my husband and kids to join me was still by far the hardest thing I’ve done in my entire life.

I don’t think I could do it now. Just in the 4.5 years since I’ve been here, I’ve lost a lot of functionality. I was able to drive down here by myself 4.5 years ago. That wasn’t the first time I made that long Michigan-to-Texas drive by myself, either. But I don’t think I’d be capable of it anymore; I get too fatigued.

I really don’t want to be disabled. I really don’t want to have SPMS, since there’s no cure and no real treatment other than symptom relief. I have a fair number of friends who claim that a very strict diet will make my symptoms disappear, but I’m wary of giving that idea too much credibility. It seems like it would be just another way for me to slip back into denial again.

So even though I don’t really want to be disabled and I don’t want to admit that this is really what my life is, I have to face the truth. I can’t work full-time. I need too much sleep. I start getting relapse symptoms after just a couple weeks. I can’t even do a job like retail because I can’t stand on my feet for more than about an hour. I have trouble learning new things and following directions.

I probably have a pretty good case for disability, though I’ve been prepared for a lengthy fight and several denials. But if and when I do get it, what am I going to do with the rest of my life? I’ve spent so many years waiting for the days that the kids were grown and I could work full-time that I never considered any other options.

1 Comment

  1. You my dear sweet friend are so inspiring! Being diagnosed with MS is hard enough, but to add the additional part of SPMS is even more difficult. I am incredibly impressed by how strong and positive you really are! Life isn’t easy, but we all make the best of it. You are truly wonderful and I value everything you share!


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