Reality is depressing

I’m not depressed overall. But nonetheless, I have to say that now that I’ve confronted denial and I admit that I’m sick and likely not getting better, it’s harder to find optimism.

I’ve never been that optimistic of a person, but I’ve tried to develop a calmer attitude overall. It’s still a relative measure, of course: “calmer” for me probably looks rather hysterical for someone else. The key point though is that I’m making a concerted, conscious effort.

The hardest part about facing the reality of my illness is not knowing how to deflect the self-blame. So many people think they have the answers for what keeps you from getting worse with MS, whether it’s playing enough racquetball or completely eliminating certain foods (though nobody can even agree on which foods to eliminate: some say you should have a low-carb/high-fat diet, others say high-carb/low-fat.)

Nobody seems to want to admit that there might not really be a way to stop this.

The truth is that by the time I first got diagnosed five years ago, doctors were telling me it was likely that my case was already progressive at that point. Because they hadn’t seen evidence before that (due to the fact that no doctors ever took my concerns seriously) they weren’t sure if I was primary or secondary progressive.

I know it’s secondary progressive, because I remember having occasional bouts of neurological issues as far back as 17 years ago that would go away on their own.

The fact that I’m secondary progressive also explains why IV steroids don’t really work for me anymore. Even with my first relapse after getting diagnosed, the IV steroids really helped me. In the relapses I’ve had since, the steroids have only been minimally effective, if at all.

I never fully recovered from the relapse I had last year. Most of my functioning improved over the winter but worsened again in the high temperatures and from the stress of trying to work full-time.

I don’t have new symptoms anymore, just reappearances of old ones.

I vacillate between feeling like everything is going to be okay and feeling despair that I’m sick and not likely to get better.

I don’t want to feel sorry for myself. I think that if I gave into that, I would get worse more quickly. But at the same time, there’s no denying the fact that this sucks. And I have to figure out how to be somewhat normal despite my limitations.

1 Comment

  1. This was written so beautifully Holly! Honestly, I have been saying for a while now that I think my MS has changed to Secondary Progressive because since my relapse last October, NOTHING has changed for the better or even the worse. I feel the same, which is just in a lot of pain daily.Acknowledging the change and admitting to it are very different, but I am still refuse to surrender to this illness. I hope your weekend is going well and you are feeling as good as you can!


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