MS, summer, and the ability to work

Texas summer is full-on upon me again. I had a lot of hope that finally getting on a disease-modifying drug for my MS would mean that I could get through the summer without reacting so badly to the heat.

But nope, it appears that it’s having the exact same effect on me as last year. I need naps nearly every day. My total number of usable hours in the day is down to six, maybe 8? If I get a nap, I can extend my usable hours to as much as 12, but they’re not exactly all productive.

I’m immensely frustrated, as both an ambitious person by nature and a perfectionist, to be so limited.

I know, the things I’ve been learning in the work I’ve done on myself tell me to go easier on myself. To just do whatever I can and to not feel guilty about what goes undone. But that’s easier said than done.

I had a lot of freelance work the past few months and it recently got to the point where it seems to be slowing down a bit. On the one hand, I feel like I should try harder to get more work. My husband now has a car payment and we have cancer bills to pay off.

But on the other hand, I’m also like, thank God the work is slowing down. All I want to do is sleep. Even when I’m awake, I don’t have the physical or mental energy to do anything I want to do. I’ve had the supplies to make a batch of soap I think even before my husband’s cancer diagnosis and still haven’t done it. I wanted to make some cupcakes yesterday but was too tired.

Before the summer weather hit, I could physically handle 3-4 hours of being out of the house, as long as I had breaks to sit down and was indoors. Today, I went to the grocery store and to drop off Father’s Day cards in the mail, and I spent about 10 minutes trying to clean up my bedroom. And that was IT. I was completely tapped out for the rest of the day.

I still sometimes think I should go to grad school. Or write at least one book. But any time I start thinking about pursuing my ambitions again, I’m reminded of my physical limitations. And I don’t actually know what my illness will let me do.

I know that once it gets to be late September or maybe October, I can go back to having more of a life again. Of not having to stick so close to home and limit my outings so much.

But how can I find something that makes me feel productive and useful during these summer months, when my capabilities are so diminished? I feel like such a slug to be doing so little and spend so much time napping.

I know I questioned a lot whether I really needed disability in the winter. But now I’m absolutely sure that I do and I’m grateful to have it.

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