Martha Stewart, I am not.

Whenever I played “house” growing up, my imaginary home was neat and tidy. In my play-world the floors gleamed, there was no clutter on the table, and the fridge was full of healthy but tasty food. I imagined myself spending the day strategically arranging flowers (cut from my own garden), baking cakes, and sewing. When I served play dinner, it was always something delicious; perhaps roast lamb with rosemary potatoes, honey carrots, minted peas, herbed butter, homemade garlic bread and gravy.

I’ve been sick since 2004. I met hubby in late 2006, so I was already unwell when our paths crossed. Nevertheless, he befriended me, wooed me, dated me, and then in December 2009, he married me. Buying our first house together was exciting. As we walked around potential ones with the real estate agent, I was imagining where furniture and art would go.

But over the years that we’ve been married, especially as my health continues to deteriorate, it couldn’t be less like my play world. Don’t get me wrong; my husband is amazing – better than any Prince Charming my childish imagination could conjure up. He is compassionate, patient, hard working, generous, forgiving…and he loves me dearly. But our house is not neat and tidy. I have no garden. I own a sewing machine, but piled next to it are several pairs of long pants I bought for myself at least a year ago, still waiting to be hemmed. And do you know what I served my husband for dinner the other night? Toasted sandwiches.

Every day, I have an inner dialogue about my competency as a wife. It’s like a thermometer, rising as I successfully complete things I want to get done, and falling each time I fail.

For example, my husband recently went on a four day hiking trip (the kind where you carry everything on your back). He has been very unwell the last eight months, fatigued and struggling to keep on weight. The doctor advised against him doing a big hike right now, but acknowledged that sometimes things are necessary for our mental health, even when it’s not the best option for our physical health. Hubby has been looking forward to this group hike for years. So I researched different lightweight, but tasty, high calorie, energy packed foods that would travel well. Two days before the hike, I went grocery shopping, and packed his four days of food. I spent the day before his hike baking (with lots of lying down to rest). My inner dialogue says to me, “You’re a great wife! How many other wives are spending two days helping their husbands prepare for their hike? You’re unwell, and yet you’re still helping him. And with all that special food you’ve packed, you’re doing an amazing job of supporting his physical health while he’s away.”

Then while hubby was away, I hit a bad patch (in reality, probably not helped by the busyness of helping him get ready to go). I was really tired, even more than usual. I spent a lot of time in bed, or on the couch. The fridge became empty. The house needed vacuuming. There was a large pile of clutter on both the dining table and the bench. My inner dialogue chastised me, “What kind of wife are you? The house looks like a bomb went off. There’s no food. The laundry is piled up with dirty washing. You’re making a mess of this wife thing. Martha Stewart, you are not.”

Then hubby came home a day early: tired, bruised, and unable to complete the hike because of his poor health. I pulled out the massage table and spent an hour helping his sore muscles relax. Then I ran him an Epsom salt bath, went grocery shopping with my sister, and finished up by making one of his favourite (thankfully easy) dinners that he’d recently requested. There was a little bit of a battle in my inner dialogue. I’d wanted to have the grocery shopping done before he got back, but I hadn’t been well enough. I lost “points” for that, and the messy house, but I got lots of “points” for the hour massage, the Epsom salt bath, and the nice dinner.

I want to stress that my husband doesn’t treat me this way at all. He thanks me appreciatively whenever I do something for him, like helping him prepare for his hike. He never comments judgmentally when the house is messy, and gently chastises me if he sees me doing too much when I’m unwell. He’d rather I leave the pile of dirty clothes on the laundry floor than flog myself to get them washed. When he’s well enough, and has time, he’s quite happy to do some of the tidying and cleaning himself. And he never, ever complains if I serve him toasted sandwiches for dinner, even going so far as to thank me for cooking dinner, even on those nights.

But the inner me is different. The inner me gets frustrated because what I want and what I’m actually capable of doing, are two very different things. I can’t get rid of that inner voice, but I’m careful not to let it win. I’ve learned over time that you can’t control the things that you feel. Sometimes the things that you feel can be opposite to the things that you know. I know that I’m unwell. I know that I’m not lazy; I’m hardworking, determined, and creative enough that, if I were well, the inside of my house would look like the beautiful ones shown in magazines. Those are all things that I know. But I feel differently. I feel lazy. I feel incompetent. I feel frustrated.

The question is; what do I do about that clash? I’ve learned that ignoring the feelings doesn’t help. They may be misguided, but they’re still real feelings. Instead of dismissing them, I do my best to acknowledge them, recognise why I feel that way, and then focus on what I know to be true.

I recently wrote a letter to a young girl just starting out on her Dysautonomia journey. She’s still at school, and I remember how frustrated I was when my schoolwork suffered because of my health. It made me feel like I was dumb, and my self-esteem took a big hit. I wanted to share with her that being unable to “perform” at your best doesn’t mean you are incompetent, it just means that you have an unwell body that is hindering you. Here’s an excerpt:​

I loved school, and I was first in most subjects… I get confused pretty easily now though. Like, the other day, my Mum rang me and asked what I was doing. And I said, “Folding rissoles”.
There was a pause, and then my Mum repeated slowly, “Folding rissoles? Why?”
“Because they’re clean; I’m putting them away,” I replied.

And then suddenly I realized that rissole was not the right word. But I had no idea what the right word was. So I just had to say to my Mum, “I’m folding something. It’s not a rissole, but I have no idea what it is.”

I rang my Mum back half an hour later and shouted, “SINGLETS! I was folding singlets!” And then we both had a good laugh about it. Rissoles and singlets are nothing alike! Sometimes I get frustrated when my brain won’t do simple things. I have to remind myself that it doesn’t mean I’m dumb. I’m just a smart girl that’s stuck with a really bad tool. Like, if a world class surgeon was in a third world country, and didn’t have access to an amazing operating theatre, even if he worked really hard, he wouldn’t be able to perform on the same level as he could in an expensive hospital. There’s nothing wrong with his skills, it’s just that the tools available to him aren’t as good. I’m a smart girl, but the tools I have to work with (my tired brain and body), well…they’re just not very good tools!

* * *

So, when my inner me starts harping on about the very un-play-world-like state of my house, or the toasted sandwiches I just served for dinner, I remind myself of the poor quality tools I have to work with. One of my husband’s favourite sayings is “Do what you can, with what you’ve got”. And some days, ‘what I’ve got’ isn’t that much, so ‘what I can’ is not much either. But I refuse to let my worth to be defined by what I can or can’t do, whether I’m sick or not. So I do my best with what I have, and then do my best to let that be enough.

Martha Stewart, I am not.
But I am me, and even with my inferior tools, that’s enough.

xx S.