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In my case, it’s my legs that are saying, “NO!

I have diligently been decreasing my steroid dose by 1mg every 2-3 days for a couple of weeks now. The only therapy that has allowed me to decrease my steroid at this rate was rituximab (Rituxan) infusions. Starting the infusions was the most terrifying thing to me. I had already tried IVIG without success, but knowing that rituximab is a much heavier drug that suppresses my immune system for several months…yeah. I wasn’t sure if I was ready for that. Especially in the current world we are living in.

But it works. No adverse effects from the therapy either.

WIN!

In the meantime, high dose steroids are wreaking havoc on my body. Since January, I’ve developed steroid-induced-Cushings, rapidly and severely. This is just another sign that the steroids are destroying me. My pain is worse and I am starting to get weaker. Not so much in my arms this time, but in my legs.

Today, my legs finally said, “No!” and when they did, it was both shocking and terrifying.

(I have been told over and over by my doctors that the symptoms I am experiencing are due to steroid use. So I’m choosing to trust and believe them at this point since this is still somewhat new for me.) They say the only “cure” for my Cushings is to get off steroids…and of course they threw in the “diet and exercise” speech for good measure.

Today, my legs finally said, “No!” and when they did, it was both shocking and terrifying. I should have known it was coming though…there is a split second as you are doing something when you feel slight weakness, but since you’ve been feeling that for days, you think nothing of it and continue.

But wait! Just as you realize you are not holding onto anything, such as a handrail, it happens. My legs collapsed when I took a step up, and the box of food I was carrying fell to the floor.

Thankfully I didn’t get hurt, that I can tell. I’m sure my knees will hate me tomorrow. I’ve never had this happen before though and it was a strange experience.

After these falls happen, I’ve noticed that my body and legs go into a state of shock themselves. As if they are just as surprised about the event as I am, just thinking about it. My legs are more wobbly, like walking on jello. It’s like the communication between my brain and my legs just isn’t connecting as well. *Yes, I’ve had all of the tests, and the nerves in my legs are fine.*

Myositis patients, ask family and friends to donate plasma

(In the medical world, a “fall” is technically when any body part, other than your feet, hits the floor, unintentionally. So you could put your hand down to catch yourself from hitting the floor–that’s still a fall. Just one knee barely hits the floor–fall.)

At this point, whether or not I want to, it’s time to rest. When your body goes through a shock like a fall or it is giving you other signs of being tired, you must rest your body. I had other plans today. I had a lot I wanted to get done. I have food sprawled out on the kitchen island to make a huge batch of potato soup.

But guess what? That isn’t happening today.

At this point, whether or not I want to, it’s time to rest. When your body goes through a shock like a fall or it is giving you other signs of being tired, you must rest your body.

After the fall, I had to go through the groceries left in my vehicle to divvy out what was necessary for refrigeration versus items that could be left in the car with changing temperatures. When you live with physical uncertainty, you have to be able to make these adjustments. Know that you don’t have to do everything all at once. Break up that to-do list, the chores. If your body is saying, “No,” then you need to comply. Mind over matter is the dumbest and most untrue saying I’ve ever heard. Instead, you have to be smart and plan…everything. Make a plan A, B, C, and sometimes D. You also need to adjust to being more flexible. Know that your plans could change immediately and be willing to go with it.

When you live with physical uncertainty, you have to be able to make these adjustments. Know that you don’t have to do everything all at once. Break up that to-do list, the chores. If your body is saying, “No,” then you need to comply.

In most cases, the changes won’t hurt anyone, so why bother getting upset? Many things feel like the end of the world, but they aren’t. Try to find humor in what you can. It might be frustrating and upsetting at first, but once you somewhat get used to the unpredictability and crazy #Myositislife, making those changes at the drop of a hat becomes easier. Besides, change is a part of life anyway.

So…

Listen to your body. Lie down, even if your mind is reeling. Do some mindfulness or meditations. Practice slowing down.


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Melissa Smith

Diagnosed with Dermatomyositis in July 2020.

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