I Am Slowly Shifting My Mindset

I Am Slowly Shifting My Mindset
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Sometimes, I forget that I have lupus. Is that weird? I have spent so much time pushing my body and telling myself that many of the things I can no longer do are because I am not trying hard enough. Then I landed in the hospital followed by a stay at a rehabilitation center.

I arrived at the hospital with a medical file. Two years ago, I was diagnosed with interstitial lung disease. Doctors put me in a glass box and had me do torturous breathing exercises to measure my lung capacity. I can’t argue with my own numbers.

There are some challenges I can’t overcome by pushing harder. Thinking I could power through is how I ended up in the hospital and rehab for so long. The shift in my mindset must change, and that’s not always easy.

A few nights ago, I was having what I call a rock ‘n’ roll night. That’s when there is so much pain, all I can do is rock ‘n’ roll. As I rolled around, I wondered whether I’d done something in physical therapy to cause the pain. But then I allowed a different thought: I have lupus, and I didn’t cause this.

I am experiencing a constant tug of war with what I can and cannot do and why. I get winded and tell myself that it’s because I’m not getting out and walking enough. But the numbers show a dramatic decrease in my lungs’ ability to function properly.

In rehab, I learned to conserve energy while building endurance. That is something I would not have thought could go hand in hand. I am an all-out type of person. Go big or go home, right? Trying to go longer without as much effort translated to going home happier and healthier. I learned that taking a seat when I start feeling winded is better than pushing myself and not having a place to rest when I need it. It is better to lessen the risk than to allow my ego to be in control.

I am grappling with changes that make me feel as if I am weak. I am also struggling with a mindset that has been in place for a lifetime. I grew up in inner city Chicago, where any sign of weakness could be dangerous. Then I joined the military, where the philosophy is that you are weak if you ask for too much help. I credit the quote, “pain is weakness leaving the body” to the U.S. Marines.

Now, I need a walker. I need a chair and grab bars in my shower, and I can barely walk 50 steps without huffing and puffing (maybe the Big Bad Wolf was just winded). Telling myself to push harder and not ask for help led me to my longest hospital stay and caused my body to need extensive rehabilitation. It is imperative that I stop telling myself I can push through. I must also accept that there are things I may never be able to do again. That is difficult.

I am hopeful that with my rehab work I will once again be able to climb stairs and go for nice walks. But I am doing my best to accept what comes with lupus and that without my shower chair I may not shower regularly. I’m a bit prissy, and I like to be clean.

Shifting my mindset may not be easy, but I am looking at the possibilities, and I am hopeful.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.
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Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.

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4 comments

  1. Brenda TRAPASSO says:

    Oh my gosh! Your comment that , “ I have spent so much time pushing my body and telling myself that many of the things I can no longer do are because I am not trying hard enough.” is me. You could have taken that thought right out of my head. I sit at home with joints aching , waves of nausea washing over me, and fatigue so overwhelming that a shower is a daunting task, feeling guilty and wondering if I’m just lazy. I’ve had Lupus 33 years and I still can’t shake the guilt that comes with it, like a written prescription from a doctor. A Lupus diagnosis goes hand in hand with guilt. Because it’s a mostly invisible disease I know that many people wonder why I miss so much church and other events. I’ve been able to push through and require things from my body that hurt and then pay for it later. Lately I can’t do that. My body is saying, “No more”. It’s so hard to be this down and not feel guilty. I wish there were a prescription that could relieve the symptom of feeling like I’m letting everyone down.

    • Kellie McRae says:

      Hi Brenda, it seems that there are a multitude of emotions, not just guilt, that come with this diagnosis. It’s hard to be kind to ourselves at times when we have no explanation for what has happened to our health and no real solutions to make it stop. I know I often feel others don’t get it but I guess that’s asking a lot from them when we don’t get it either. I am going to try to take it day by day, perhaps we can both agree to do it in baby steps. A little at a time, be nice to ourselves, remind ourselves that even though we don’t look like we are, WE ARE fighting our bodies. We aren’t lazy, we can’t push through to make it better and we shouldn’t feel guilty. What we can do is our best on our good energy days and rest on those days when our bodies say to do so. Sending you comforting hugs.

  2. Christine M M Sanders says:

    Hello sweet Kelly:
    You sound better. Like you are adjusting.
    I had to give up baths long ago. I am also a fan of clean, fresh skin.
    When I cared for my mother dying of Alzheimer’s I learned some tricks.
    One was since tub baths were impossible : we used the Assure wipes.Believe me when I say they work. She was incontinent and often has diarrhea. But with the wipes she could always smell fresh.
    Medical advice was that she never has to bathe again if she did not want to. We also used the water less hair cleaning cloths.
    I use them on myself when I can’t do the daily shower. Also after caring for my husband for years after TBI : I used the water less shower foams, dry shampoo and water less bath mitts .
    CVS carries a number of products. I am sure they went over this in rehab.
    Hope this helps.
    Best Wishes ,
    Chris

    • Kellie McRae says:

      Thanks so much for these helpful tips Christine, no CVS here in Merida, Mexico where I live but plenty of pharmacies although, I’m bald so the hair care is pretty simple 🙂 I am learning to keep wipes with me even in my purse to wipe down door handles and grocery carts. I don’t assume the places I visit will have supplies in place. I’ve been issued a shower chair. I haven’t sat in a tub of water in years but I do love the water of the shower so I hope I never have to give that up. I am so grateful that both your Mom and your Hubby had someone who is looking out for them. Sending you good vibes and positive energy.

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