So my resolution to not focus on my health problems wasn’t something I could sustain. I had a few really peaceful days, which were amazing and beautiful. That’s how I want to train my brain to become every day.
It’s hard not to feel like a failure because I couldn’t maintain it.
Even though the weather has cooled down to a point where it’s no longer having as major of an effect on my health, I’ve had a lot of stress since then. I’m getting better about managing minor stress, but extreme stress is almost as bad for my health as the extreme heat.
I knew we needed to fix both my car and my husband’s car, which was stressful in itself. (My adult son’s car also needs repairs, but he has been so good about saving money that he doesn’t need our help with that.)
But then we got the estimate for what it will cost to fix my husband’s car. It’s not even the transmission or the engine, and it’s still the highest estimate for any car repair ever in our 24 years of marriage. There’s so much wrong with the car. It felt like a punch to the gut and I’m still reeling.
If we had more resources, I would ditch the car completely because the value of the car is not much more than the repairs. It’s an 11-year-old GM SUV that gets poor gas mileage and everything costs more to repair because it’s an SUV. There’s was a point in our lives where we would have recognized this as a bad item to own and gotten something else. But we don’t have those options anymore and we’re stuck with it.
My husband fixed one of the things himself so that will save a little money. I’m so grateful that he tries to figure these things out, because he knows nothing about fixing cars and hates doing the work. And the poor guy is already working two jobs as it is.
We’ll find a way to borrow the money and just get further behind, but I’m just so tired of always falling further behind.
I can’t help but blame my health for this. If I were working full time like I tried to, we would already have money in savings that would have at least covered part of the repairs. There wouldn’t be so heavy a burden on my husband if I could work. We would actually be getting ahead because I’d be contributing, which was the whole point of moving down here.
I also placed way too much importance on a stupid concert I want to go to in a couple weeks. Normally, missing out on stuff I’d like to do is no big deal; it’s the norm. It doesn’t get me down because I don’t expect to go.
But from the time this concert was announced, I stated my intention to go — specifically as a “fuck you” to my illness and that I wasn’t going to let it stop me.
I have gone without too many fun things in my adult life because finances didn’t allow it, and I decided that I had to make it a priority to do things now while I still could. I’m not sure how long I’ll be able to do those things because my health is rapidly getting a lot worse.
Filing for disability was the hardest thing I’ve ever done. It’s hard to convince myself that it doesn’t mean my life is over. And since that concert was announced after I filed for disability, it carried so much more weight than any other concert has.
It represented my tiny bit of hope that my life would not be over because of my disability, because I would prioritize doing the things that made me happiest for as long as I was physically able.
And of course, now there’s no money for the tickets. I think my husband thinks I’m just being immature about it and throwing a tantrum to get my way. What I can’t seem to convince him of is that I placed way too much importance on attending this concert because of what it means about my hope about my health and my future.
It’s not about the stupid concert, it’s about my fear that I already passed the window of what’s possible in my life. It’s about my fear that the fun part of my life is already over.
I’m usually pretty able to get by without needing to go out and do stuff. I can be pretty happy if I can only spend $20 bucks or so in a week.
But I’m finally confronting what a future on disability is going to mean and it’s a lot harder than I thought it would be. And I’m sure my husband is intensely feeling that in a different way. If it’s hard for me to be so helpless, it’s got to be harder on him having to carry me.
I’ll bounce back. I always do to some degree. It’s much easier to keep a healthier perspective when I don’t have negative influences in my life and I’ve gotten rid of them.
In some ways, I’m still doing okay overall at holding it together. My 17-year-old found out yesterday that I usually have so much pain that I can barely walk. I’m proud that I managed to hide that from him so well for so long and that all he could see about my MS is how it affects my brain.
So I’ll somehow find a way to adjust to the circumstances. I always do. Things are probably not as bad as they seem.
I was just already beating myself a lot over the fact that I couldn’t keep working full-time because we really needed my income, and these circumstances have made me only beat myself up more. And I’ve learned a valuable lesson not to ever pin any of my hope on things I can’t usually afford like going to concerts.
I have to find different reasons to look forward to my future. Preferably that don’t require leaving my house or spending money because I may not get to do much of that. I’m just not sure yet what those things will be. Probably some variation on just being thankful for what I already have instead of wanting more.