Muddling along

Tears were streaming down my cheeks all of a sudden. He turned to me and said, “Hey, I’m not dead yet,” which just made me cry harder. He knew exactly why I was crying and I felt so guilty for what I was feeling.

My emotions are on kind of a rollercoaster lately for a number of reasons. I’m still waiting for the Rebif (MS drug) to work its way out of my system. There’s no question that it was increasing my depression and I wasn’t even at the maximum dose yet. More on that in a bit. My hormones are also completely out of whack as medications appear to have accelerated menopause for me.

I just turned another year older, too, though it’s weird because I thought I was already 46. Last year felt like it was at least two years long. Nothing I’ve ever gone through was harder than last year—though I know harder years are coming. I hate admitting that things are so hard because I wonder if people are reading and feeling glad that I’m suffering.

I’ve felt really disconnected from my husband all week. I haven’t gotten much time to spend with him, in large part because I have had to nap so much more and he’s been more tired, too.

Something that didn’t occur to me at first was that even taking my youngest to the concert last weekend was tinged with sadness. It was the first concert I can recall that I’ve gone to without my husband in years. I came home to a quiet, dark house. It felt almost like my husband wasn’t around anymore, a glimpse of what my life will be like in the future: short bursts of happiness shared with the kids, followed by being completely alone. And that looks like it’s going to be lonely and it sucks.

I can’t be caught in this state of anticipatory grief forever, wearing a black veil before it’s time. I need to find the joy and hope in the present, enjoy every day with him while I still have the chance. But it seems like my husband is doing worse on the new chemo (at least from my perspective; he doesn’t necessarily agree.) It has really hit me that this is the reality we’re in for the next three years—and this is only the second week. We still have a long way to go and it’s all uncertain. I’m really not feeling ready to take it on but I don’t get that choice.

At the same time, I think my meds adjustment is making it that much harder. This is what I remember my depression being like sometimes before I got on effective treatment. And it’s kinda scary to think that a stupid MS treatment can sink me so low in a little over a month.

This is just one of many reasons I’m again reconsidering what to do next about MS meds. I see the PA at my neurologist’s office next week and I know they’re going to want me to choose another medication. To be honest, all of my options terrify me. Many of them also have depression as a listed side effect and I don’t want to go through this again.

My gut still tells me to stop messing around with drugs that may make me worse. I’m not progressing in terms of my illness and that’s a good thing. The whole point of the drugs is to keep me from progressing—not to even make me better or to cure me. I’ve been researching a lot and quite a few people have reported getting much worse on the meds and I desperately don’t want that to happen to me.

Life feels out of control, even though I can point to so many little temporary reasons why it does. I just want to feel better again. Even a therapy session yesterday didn’t help much.

I think I just need to hang on by my fingernails, feel what I need to feel, then buck up and keep going. What other choice do I really have, anyway?

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