The thing about depression is that it’s like a fog that comes over you. You can’t see much through it, like someone threw a dark blanket over your head. But if you’re lucky enough to have found effective treatment before, you remember what it felt like to be happy…you just can’t seem to find your way back there.
And then, suddenly, it’s like the fog lifts. Something removed the dark blanket from your head and you feel good again. Almost like when you’ve recovered from a bad cold, you rediscover what it feels like to be normal again. And you realize just how good it feels to actually feel good again.
So I think the Rebif is finally mostly out of my system because I’m no longer so depressed anymore. The only thing remaining is a welt on my stomach from my last shot a week ago, sigh. It’s definitely like the fog lifted, but it’s more than that. It’s actually more like I’m seeing things more clearly again than I have in a while. I have a lot more motivation, almost like I got a vitamin shot.
A couple things have become clear. One is that I definitely don’t want to go back on meds, unless they tell me I can go back on the Tecfidera (which they probably won’t because that dropped my white blood cells so low.)
But partly as a result of talking through my dilemma with my mom, I created a mental pathway to making the decision. I first determined that doing nothing isn’t an option. I do take my disease seriously enough for that now. Which then left me with a couple of choices: go on stronger meds, possibly even Ocrevus (which terrifies me even more than the other MS meds), or commit to a more radical lifestyle change. I had to decide which was the worst thing I feared: the disease itself, the heavier-duty meds, or a lifestyle with dietary changes and regular exercise.
It may not be surprising if you’ve read my other entries that ultimately I decided the thing I’m least scared of is my disease. I gave into fear a bit last week in my depressed state and thought maybe the doctors were correct, that my disease was so bad that only Ocrevus would prevent me from becoming a vegetable.
But then I examined the evidence for that viewpoint and my gut instincts. The truth is that the doctors are basing their dire predictions solely on the appearance of my MRI, which is indeed bad, rather than my symptoms. But my MRI doesn’t correspond at all to my degree of disability. (No one’s does with MS. You can have only one lesion and be unable to walk.) And my brain lesions don’t look at all like typical MS lesions. Instead, I have significant white matter damage, and my diagnosis was “vanishing white matter disease” for several years.
When I had the 8-hour neuropsychologist exam last year, he said that long term untreated depression can damage white matter. Given that I had severe untreated depression since age five, I’m not surprised that it could have resulted in the changes being seen on MRI. Numerous studies back this up, like this one and this one.
Almost all the meds for MS have increased depression as a possible side effect. After my experience with Rebif, where my antidepressants weren’t working at all, I’m not willing to risk that again. Of course, depression is a symptom of MS itself, but for me I know I had the depression first and it was so bad for so many years that it damaged my brain. Again, the neuropsych said depression can cause the changes I’ve seen.
The other thing is that I think my case is also more vascular in nature. My only really major relapse (in 2017) was completely indistinguishable from a mild stroke, even to the neurologist and radiologist who examined me in the hospital. They only called it an MS attack because of my prior diagnosis with the disease.
I also don’t have many of the telltale hallmark symptoms of MS like optic neuritis (vision problems) or bladder/bowel incontinence. I don’t have frequent falls. As long as I get adequate sleep and avoid stress, I have virtually no symptoms at all. But when sleep and stress levels are poor, I have a lot more issues like muscle spasms and pain.
So that brings me to the next step in my decision making process. What scares me the most? It’s not the disease. Despite my moments of being scared by the doctors, I don’t actually believe I’ll get worse without the drugs. I’ve been unmedicated for all but 9 months of the 8 years since I’ve been diagnosed and I’m not significantly worse than I was in the beginning.
I feel confident that if I treat it like a vascular illness—by doing all the healthy things most people should anyway—I’ll reduce my risk. Will it be hard to get started? Yes, of course. But I also believe I can do it based on other things I’ve done. My mind has historically had a powerful influence over my body.
I’m also already taking a lipoic acid supplement that’s been proven more effective than Ocrevus at reducing brain volume loss. This is supported by scientific studies, as is the fact that diet can also reduce or eliminate symptoms.
The truth is that I just don’t believe in the drugs. That’s for myself only; I’m not saying anyone else should avoid them. But for me, I think they’re too risky. If I were to take them, I would be motivated by fear, not faith that they would help me. I strongly believe there’s a mental component to fighting this disease; maybe even most diseases. If you don’t think a treatment will work, I think it’s less likely that it will.
Most importantly, I’m learning to listen to my gut. My gut tells me that the doctors aren’t even positive that I have MS. It’s not denial to think maybe I don’t. I’d at least like to be more sure that MS is causing what they see on my MRIs, or that my MRI predicts that I’ll get worse than I have in the past 8 years (when I wasn’t really trying anything to get well.)
Will this be the most foolish decision I’ve ever made? Only time will tell. Maybe I’ll get worse and regret not going on the meds. But deep down, I don’t think I will.
In fact, I’m finding the fighter side of my personality again. I choose to believe that someday I’ll be well enough to get off disability. I still want to go to grad school and become a therapist.
I’m not ready to count myself out permanently as the sick girl, even though that’s the way the doctors want to see me. My gut says no to the meds and I’m going to honor that. The thought of going on meds that terrify me is so much scarier than anything else, especially since I doubt they would work as well as changing my lifestyle.