In my first post about MS, I included a picture of me. I had make up on. It was taken before this most recent flare hit. I captioned it, “As you can see, I don’t look sick…”
I’ve heard that a lot in my life. “But you don’t look sick.”
Per a recent post, I don’t know how long I’ve had MS. I don’t know how long I’ve been stumbling through life with a smile plastered on my face while masking symptoms of a chronic illness. I did it for so long and so well that just before my diagnosis, I was wondering if I had Bipolar Disorder. I was wondering if the reason I tested negative on lab reports and didn’t have a lot of clinical signs of anything was because the symptoms were in my head. They seemed cyclical. There’s a history of mental illness in my family. It seemed a far more likely explanation than having a chronic illness because in my mind, if I were chronically ill, then I should always look and feel ill.
On the other hand, once I got the results of my MRI back which indicated MS, I spent a few hours looking up other possibilities. I had trained my mind to think that the most obvious answer, I’m not sick when the lab results say everything is fine, wasn’t right. Because those lab results couldn’t explain why I felt so rotten. So, there I was, convincing myself that I didn’t have MS. That lesions on my brain must mean something else. One possibility was Lupus, which strangely, I was more comfortable with as I had researched that before with all my strange symptoms. MS just seemed so much more severe, in my mind. Eventually, I told myself to stop and accept the report as it was, a strong likelihood of MS over anything else and to wait for more from my neurologist. It was a tough weekend!
A friend on social media that has Rheumatoid Arthritis once used the hashtag #spoonie. I didn’t know what that was. I looked it up and read about the Spoon Theory. Suddenly, everything clicked.
I don’t usually look sick, unless there’s something else going on or I am even more exhausted than usual. However, the Spoon Theory perfectly explains everything I feel. I’ll include a link but the short version of the theory is that spoons symbolize energy.
Healthy people essentially have an unlimited supply of spoons. There’s nothing controlling their lives but themselves. When you have a chronic illness, something else has determined how many spoons you have on a good day. This will vary by person. Say, you can start with 12 spoons. Every day life activities use spoons. Showering, dressing, making food, driving to work, work itself, all these activities use your spoons. Someone with chronic illness has to be VERY aware of how they use their spoons. Every choice is weighed. If I do “this” will I have enough energy to do “that”? Sometimes, you can borrow against the next days’ spoons, but then you have even fewer spoons for that day. Unexpected issues can wreak total havoc on our spoon ratio. Things that might add spoons to a healthy person, such as naps or sleeping in, don’t add an extra spoon to someone with a chronic illness. Missing medicine, a meal, added stress, a cold/flu etc. can all take away spoons.
I’m in a flare right now. My energy is pretty much nonexistent. I don’t know if I will get it back. With MS, sometimes things don’t return to “normal” in between flares. It’s been 3 months. This might be my new normal. I’ve tried to manage life so there are some babysitters that can play with my kids and make them food. On those days, I rest a lot. That means laying down in my bed, often sleeping, sometimes just watching something on my phone or the tv. I am not writing or working. I am not even reading. Even sitting up tires me out. Going down the stairs to make food requires rest. I can’t immediately go back up the stairs. I have to rest before and after a shower. There’s no rushing to get ready anymore. Then there are busy days where I have committed to activities with the kids (I will be so happy to drop them!) and they all pile up on the same day. Some days, I can’t even try to make them. Other days, I do them but am wiped out the rest of the day and the next one to three.
Despite this, I can say along with Spoon Theory author Christine Miserandino, that slowing down has been worthwhile. I used to always be on the go, juggling dozens of things at once. Now, I’m more aware of how I use my spoons and I don’t waste them. I do the things that are important. I don’t worry as much about the future. I’ve let go of the past. To live so much in the present is truly a gift.
You can read The Spoon Theory by Christine Miserandino here.
2 thoughts on “MS Monday Check in– You Don’t Look Sick/The Spoon Theory”
I recognise so much of what you are saying here. I used to pray in bed if I may die in my sleep I was exhausted. When I would wake up, I would cry, not knowing how to go through another day, yet you have to. The excruciating unexplained pains and then every time in other places in my body made me think I was mad. And of course nobody could see it from the outside, the looks they gave me, pity, unbelieve etc. ( at least in my mind they did ). Every doctor I consulted told me I was depressed, which I wasn’t. I felt a fraud until they diagnosed it after five long years, Lyme/Borrelia and some other difficult words. 🙂 My god even when I read about it and realised it was a horrible disease, just because I had a name for my suffering it made me happy not to be the only crazy one, and the condition was recognised. After successful treatment, the strange pains have gone. Although the mind fog did not altogether, and because of that, I still feel insecure, get a blank mind if I want to say/write or explain something, say the weirdest things, at the most inconvenient times. I can’t concentrate or think straight if I experience that fog. But I live, and now in reasonable comfort, that must count for something. I wish you and yours well.
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I’m sorry you have also suffered through this but I’m so happy to hear that you’re doing better! I really think people that haven’t been through it, can’t quite understand when we just say things like, “I’m so tired.” However, I’ve shared The Spoon Theory with a few people now and they all say that it has helped them understand. I’ve also recognized that I was doing some of the spoon conservation long before this most recent flare and I had a diagnosis. I used to get upset with my husband because he did things that seemed to take too long or wasn’t in the most logical method. Like not gathering everything he needed before going down the stairs. Well, that’s because it doesn’t tire him out so he doesn’t have to think 15 steps ahead! It didn’t occur to me that what he did was *normal* and I was the unusual one.