I headed into this past weekend feeling very confident that I’d be able to completely finish the mural wall in the studio, and show up this morning to show you all kinds of pictures of the finished wall. But we all know how plans go, right?
Sadly, things didn’t work out how I had planned them. I just have a couple more things to do (mostly electrical, but a little bit of painting), but it’s still not finished. *Sigh*
Matt’s M.S. has really wreaked havoc this year, and this summer has been especially difficult. Because of M.S., Matt is very sensitive to weather extremes, whether it’s extreme hot or extreme cold. Because of his sensitivities, we have to keep our thermostat on 67 degrees year round. If it gets much warmer than that, he loses all strength. If the temperature dips much below that, he gets cold and that causes his muscles to seize and tremor.
There have been times that I’ve tested to see if this is all in his mind. Without telling him, I have on occasions raised the thermostat to 69 degrees, thinking that there’s no way he would notice. But every single time, without exception, within about 90 minutes, he’s calling me into the room, asking me what the thermostat is set on, because he’s feeling hot. I’ve never been able to get away with raising the thermostat. He can always tell.
So you can imagine how this past Texas summer was for him. I lost count of the number of 100+ degree days we had in a row with no relief in sight (I think the streak was something like 45 days in a row), and so many of those days had “feels like” temperatures surpassing 110 degrees, and even up to 115 degrees. There were so many days with high temps and high humidity, which is a terrible combination for Matt. When it gets that hot, it doesn’t matter that our thermostat is set on 67 degrees because there’s no way our air conditioner can keep up. (We’ve never had a problem until this year, and no matter how many times we had it checked and worked on, it just wouldn’t keep up. But this was also the second hottest Texas summer on record.)
Needless to say, the last three-and-a-half months have been horrible for Matt. And when things are horrible for Matt, they’re no walk in the park for me, either. He has required much more help and attention from me over the last few months than he usually does. And that means that my work on the house slows and my progress seems to crawl at a snail’s pace.
I know my regular readers understand our situation, and I’m so thankful for the grace and understanding that y’all extend to me. Other DIY bloggers who have able-bodied spouses helping them with projects (or taking care of other things while they can focus on projects) can finish those projects in a fraction of the time it takes me lately, and it’s sometimes difficult for me not to feel guilty about that. But then I remind myself of my one single resolution that I made for 2023. No guilt. I became determined that I wasn’t going to heap guilt upon myself for things I can’t control.
Specifically, what I said was this: I’m just one person, and I only have so much time. I’m going to do what I can (while truly trying to use my time efficiently), not do what I can’t, and feel zero guilt about it. (You can read more about my one solitary resolution for 2023 here.) That mindset has helped me so much during this difficult year.
But back to this past weekend. Matt and I celebrated our 21st wedding anniversary last Thursday. Twenty-one years! That’s hard to believe. But, as has been the case for the last few months, Matt just wasn’t feeling up to leaving the house, so he let me choose a restaurant, and I went and picked up a meal for us from my favorite restaurant. (My favorite restaurant is Rosa’s Café, by the way. 😀 I’m a simple person. Give me fajitas, and I’m happy.) So we ate lunch, watched a few of our favorite shows, and had a very relaxing afternoon.
But later that evening, he started feeling really weak. That didn’t shock either of us. He’s very sensitive to food, which is why he feels his best when he eats an unusually restrictive diet (steak, butter, salt, and water). But it’s just so hard to eat such a restrictive diet! Just imagine that all you can ever ingest is steak, butter, salt, and water. How boring. So he craves some variety sometimes, but he and I always know that he’ll pay a price for it. It’s a trade off that he’s willing to make sometimes. And sure enough, on Thursday, he paid a price for eating Rosa’s with the weakness and exhaustion he felt later that evening.
Generally, when that happens, he just needs a good night’s and he wakes up the next morning feeling (his) normal again. But he didn’t sleep well at all, and he woke up Friday morning feeling exhausted, weak, and groggy. He seemed really out of it, like he had taken a muscle relaxer or something. The whole day was like that, like he couldn’t fully wake up. He slept a lot during the day, but naps during the day generally don’t help Matt. They just make him weaker and groggier. So I pretty much stuck by him all day on Friday, not wanting to get too far away (like working in my studio) in case he needed help drinking water or something like that.
He slept better on Friday night, and did a little better on Saturday, although he still wasn’t back to (his) normal. And because I was dealing with some sciatic nerve pain that morning, I really didn’t want to cook, so Matt wanted me to go to Sonic to get us some lunch. For some very strange reason, Sonic is one of the only places where I can get food that Matt doesn’t react negatively to. I have no explanation for it, because obviously, Sonic isn’t heathy food. But about 98% of the time, he can eat it without suffering any negative consequences. Like I said, I can’t explain it.
What I didn’t realize is that Matt only ate half of a pretty small hamburger, and that’s it. And that’s all he ate all day long. He seemed to be doing better than the day before, so I after we ate, I headed to the studio to work, and he never said a thing to me the rest of the day about being hungry and wanting to eat. So I just kept on working until bedtime, not realizing that all he had eaten all day long was half of a small hamburger.
Sunday, I went to breakfast with my mom, with the plan that I’d stop and get Matt Sonic on the way home, sit with him while he ate, and then spend the rest of the day working on the studio. But when I got home from breakfast with my mom, Matt wasn’t doing well at all. I checked his temperature to see if he had a fever, but it was normal. And he didn’t seem sick. This wasn’t like a flu or COVID. It was just extreme weakness and exhaustion, so he didn’t want to (and probably would not have been able to) eat right away.
So I spend a while trying to help him in various ways — helping him drink iced water to cool down (he was complaining about being hot, but then he’d get cold, and then hot again). I gave him some electrolyte drink. That seemed to perk him up a bit. And I just kept trying to do other things that would keep him comfortable. Again, I didn’t want to stray too far in case he needed me.
After a couple of hours, he was finally ready to eat, so I put his food in a bowl and gave it to him, and we watched a show while he ate. When the show was done, he said he was finished eating. He seemed to be doing better, so I headed the studio to work. I was finally able to start working around 7:00pm.
After about an hour, I headed back to the bedroom to check on Matt, and once again, he was doing terribly. Again, he had extreme weakness, difficulty talking, etc. I tried giving him more electrolyte drink, but it wasn’t helping this time. After about 30 minutes of trying other things, and him trying to speak to me (but I couldn’t understand him), I finally understood him to say that he wanted to go to the hospital.
Well, when he gets like that, I can’t get him into his wheelchair. So even though we have a wheelchair van now, there’s no way I can get him to the hospital. When he gets that weak, it’s like trying to wrangle a 200-pound mound of Jello. So I called 911 and the EMS came. They took all of his vitals, and everything was normal except for blood pressure, which was elevated. He usually has normal blood pressure, so I’m almost 100% sure it was elevated because he was feeling anxious and scared and giving himself a little mini panic attack.
After they talked to him a while, he actually seemed to calm down a bit, and even laughed at a few of their jokes. The lighter things got in the room, the better he could speak, and the easier it was to understand him. And that’s when I realized that for the second day in a row, all he had eaten was half of a (pretty small) hamburger.
So basically, Matt had been almost fasting for two days. And if there’s anything you need to know about Matt, it’s that he can’t fast. Matt loves to fast, and if he could have his way, he’d fast for a week at a time. And while he used to be able to fast with ease and feel great doing so, he simply can’t do it anymore. Fasting makes him incredibly weak and exhausted. So while he hadn’t exactly been fasting, he had been eating so little that he may as well have been fasting.
After the EMTs were here for a while, and Matt’s anxiety seemed to lift, he finally decided that he didn’t want to to go to the hospital. But they encouraged him to eat something and to try to get a good night’s sleep. So as soon as they left, I made him a ribeye steak. But because he was so weak, I had to blend it for him (yep, I blended up a ribeye steak, along with lots of butter and MCT oil because good fats are brain food), and I stood by the bed and fed him blended steak with lots of fat. And as he ate, it was like watching him “recharge”. By the time he finished, he had more energy and looked more alert than he had in days. It was amazing.
So after a good night’s sleep (which he finally got last night), Matt is finally back to his normal this morning. And he and I are both so relieved that we averted another hospital stay. I’ve given him yet another lecture (he loves my lectures, I’m sure 😀 ) about how he can’t fast, no matter how much he wants to, and I’ve given both of us a good lecture on how it just doesn’t pay to eat foods that he knows he’s going to react to. Even if he thinks the tradeoff is worth it for one yummy meal, it’s almost never worth it. The cost is way too high for him.
So that was our weekend. Maybe today I can get a good chunk of time to work on the studio. Or maybe I need a nap. We’ll see. But what I can tell you for sure is that M.S. is a real bitch. (Sorry, but not sorry. I generally keep things PG-rated around here, but after 19 years of us dealing with Matt’s M.S., that’s just what I’m feeling this morning.)
Addicted 2 Decorating is where I share my DIY and decorating journey as I remodel and decorate the 1948 fixer upper that my husband, Matt, and I bought in 2013. Matt has M.S. and is unable to do physical work, so I do the majority of the work on the house by myself. You can learn more about me here.