[Part of my mission to “live deliberately” involves ruthlessly cutting out anything that saps my time, energy or money to no good end. I’m calling these things my “Quits,” and this is one of the many items that have found themselves on my Quits List.]
This is one of those posts that has the potential to make you hate me.
I hate myself for it. But we’re all about the honesty here, and I’m hoping there might be someone out there this could help in some way or another. I don’t know in what way, but something has been pushing me to write it for weeks, so I’m just going to write it. It needs to get out, because it’s been a huge issue that needs dealing with.
So here goes…
My Husband Has Mitochondrial Myopathy
You can read the full details on this condition (which was first diagnosed as Fibromyalgia) here, but the short explanation is that his cells don’t produce energy like they’re supposed to. This means that:
- He feels aches and pains all the time in random places. We’re never sure if something’s actually wrong or if it’s just wonky nerve signals.
- He’s sensitive to light and extremely sensitive to heat—which makes the summer an especially bad time for him. He’s gone down a full clothing size this summer from not being able to eat since he’s had so many flare-ups.
- He has trouble eating.
- He has trouble sleeping.
- He gets extremely tired after even a little bit of physical exertion and can be in pain for days after if he doesn’t take it easy.
- He can’t stand for long periods of time (like at concerts).
- He can go from feeling fine one minute to feeling like crap the next. (If he ever really feels “fine” like you or I do.)
- He has trouble concentrating and remembering things (the fancy name for this is “discognition”; the layman’s name is “brain fog”).
In spite of all of this, my husband is a saint. He’s always thinking of other people, bringing me flowers spontaneously on his way home from work and asking how I slept the night before, even if he’s clearly had a horrible night of it himself.
He rarely complains, rarely gets caught up in self-pity, and he has such a warm and upbeat personality that plenty of people have trouble believing he’s even sick. (Did I mention some people don’t believe he’s sick, but imply he’s just wimping out and not “toughing things out” like other people do? Yeah, that’s also a problem.)
Yet, in spite of all of this, I am often a total and utter bitch to him.
Let Me Count the Ways…
I’ve been trying very hard lately not to vocalize or show my increasingly awful thoughts in my actions, so he may not think I’m as bad as I am. (Or maybe he does realize it? Maybe he’s just being exceptionally forgiving of me.)
But, inside my head, I am a selfish, resentful, bitter little child about so many things:
1. Total Responsibility For All Household Chores Falls On Me
Budgeting, cleaning, dealing with repairs, managing the calendar…Anything that could possibly need to be done to maintain a house, two dogs, and the life of married couple falls to me.
This is why I’ve given up on keeping my house clean anymore. With so much on my plate and so little time for any of it, I have to let a lot (and I mean A LOT) of things fall through the cracks. There’s just nothing else to do. I feel horrible about this, then angry because everything is on me. It doesn’t seem fair. I am the hardest worker you’ll ever see, but carrying everything on your shoulders all the time can wear you down. It makes your nerves raw. It makes you start to resent every little extra thing that comes your way. It makes you have a completely disproportionate meltdown when something breaks because How Much More Am I Supposed To Be Able To Deal With?
But: is being sick all the time the way my husband wants to be living? Is that fair? I don’t even need to answer that question for you to know how awful it makes me feel every time I remind myself of it. Here I am grumbling over stupid things like laundry and bill paying when my husband is spending another night in bed just trying to make the hours to pass. It makes me feel sick, when I stop myself long enough to smack some sense into myself.
2. We Spend a Lot of Time in Bed in the Summer
Our bedroom and my office are the only rooms with A/C’s, so as soon as my husband gets home from work most evenings during the summer, he goes straight into the bedroom. Which means when I’m not working on my freelancing, my nights are usually spent lying in bed in the dark watching TV for hours.
This makes me extremely antsy. I’m ambitious and curious, and although I almost always prefer spending the night at home to going out, months of spending the night at home can start to wear on you. The weather is gorgeous, we’re young and supposed to be in the prime of our lives, and our city is filled with pretty parks and great restaurants and fun little main streets with shops to browse. There are so many things we could be doing together, even once in a while for a change. Instead, his being housebound makes me feel like I’m restricted to being housebound, too.
But does he enjoy being stuck in bed all the time? Sure, he loves his Xbox and could probably watch TV for 24 hours straight and seem perfectly happy doing it, but it’s not because he’s lazy or that’s what he’d most love to be doing with his time. It’s because he physically can’t do anything else, and he’s making the best of it. I fall into the exact same trap as the people who fail to realize he’s really sick. Our routine has become so set and “normal” for us that I fail to realize why it is the way it is. I focus on all the things we’re not doing, instead of focusing on why it is that we can’t.
Instead of boohooing the fact that I rarely get a night out on the town, I should be doing everything in my power to make my husband as happy as I can with everything he’s dealing with. I could go out on my own sometimes, even though I’m not a fan of it, just to relieve some of my stir-craziness so I can be a better wife to him.
I could, I could, I could be doing so many things better…but so far? I’m not.
3. I Never Know When Our Plans Will Actually Happen
We had a disastrous trip this summer where my husband got sick and we spent the majority of the vacation watching TV in our hotel room, with me eating a reheated microwave “burrito” at a Target café at 9:00 p.m. because we’d gotten literally one block from the restaurant we’d been looking forward to visiting when my husband got sick.
It’s extremely rare that we can ever say, “Hey, let’s go get some ice cream!” or “Want to take the dogs for a walk?” spur-of-the-moment. We used to be able to, when we were first dating. But that’s not the way things are anymore. Every plan we make to go out for dinner or hang out with friends, we both know, has a 50/50 chance of being cancelled. This can get really disheartening. It’s so rare that we get to step outside our normal housebound schedule that even I, the queen of anti-social homebodies, can start to feel depressed after enough nights stuck indoors thinking about the movie we could have been seeing or the reservation we had to cancel.
But how disheartening is it for him? I know he tries to do as much as he can, and admitting he isn’t up for something can’t be easy for him. But am I sympathetic to that? That’s the thing—I’ve learned to hold my tongue, nod my head, and say “o.k.” as matter-of-coursely as I can. But in my head? I’m disappointed. I’m disgruntled, sometimes. And that is a 100% selfish, unfeeling, and bitchy way to react to this.
I wish I could go back to the beginning and do everything all over again the right way, but I can’t. All I can do it try to make a total 360 going forward.
Trying to Grow a Heart That’s Gone Three Sizes Too Small
I’ve started reading books on what it’s like to deal with a nebulous, life-long condition like mitochondrial myopathy. Some are geared towards loved ones and “caretakers”; some are written for the people who suffer these conditions. Both kinds make me realize what a self-centered prick I’ve been and how hard every day must be on my husband, even though he rarely shows how bad it really is for him.
I want to start understanding more what it’s like to be sick, the kind of sick that will never really go away, and how people cope with that. So I can help him cope with that as much as I can learn to cope with it myself (which I desperately need). I considered starting a blog on what it’s like to go through all this, but I think I need to do some serious research and soul-searching before I start distracting myself with another fun, shiny blogging activity.
Because I promised to be with him through sickness and in health—not to be with him with secretly frustrated thoughts and dissatisfied grumblings, but with empathy, patience, grace, and positivity.
He deserves better than me. He honestly does. But I’m going to try to be more like that person…
Image: Frédéric Poirot / Flickr
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