Since My Lupus Diagnosis, I’m More Aware of Things We Take for Granted

Since My Lupus Diagnosis, I’m More Aware of Things We Take for Granted

hurricane

When I lived in Thailand, I made this funny video about the things people living in the U.S. take for granted. While the video was intended to be entertaining, some of the things I once took for granted are a challenge these days. With lupus, you can feel OK in the morning and then be rushed to the hospital by the afternoon. Lupus doesn’t give you any warning during the good hours, days, or weeks. If you have a day of low pain and high energy, it’s a great one.

Recently, I have been dealing with a lung infection. I have coughed so much that every part of my body is in pain. I’ve had a headache for at least three days. My cough has caused me to lose my dinner a few times. I tease and say that even my knees hurt. (That’s funny because with lupus there’s almost always some joint pain.) OK, fine, don’t laugh at my little joke.

This morning, I finally fell asleep around 6:30 a.m. after being up all night hoping it isn’t possible to expel a lung by coughing. Then, around 9 a.m., my bladder betrayed me by needing to be emptied. I had to give myself a pep talk because while my mind was saying, “Girl, get up and go potty,” my body was warning me, “This is going to take some time.” It took me about 10 minutes to move to the edge of the bed. I finally made it, but I was not happy.

When your body hurts, warm water is a welcome refuge. After battling with my pajama top — sometimes pulling things over my head takes some logistical planning — I got into the shower. Most folks hop in, wash their body, grab the towel, and dry off — easy peasy. But for me, it’s not that simple. I was so winded after moving my arms around to wash my body that I had to lean against the shower wall to catch my breath. I grabbed my towel and dried myself off in stages: dry, catch my breath, dry some more, catch my breath. You get it.

When I first started showing symptoms of lupus, I experienced considerable weight loss in a short time. I have since learned that lupus likes my muscles, so it eats them up.

Once I got back to the edge of the bed, I started to put on lotion. This effort also exhausted me and for some reason caused my muscles to hurt. Finally, lotion on, I went to get dressed.

I decide what to wear based on ease of dressing. I rarely wear leggings because they’re close-fitting and take extra effort to put on, so I tend to spend a lot of time in loose, flowing clothing. Sometimes I wear pants or a skirt and blouse, while other times I wear a maxi dress. Today is a maxi dress day. Many of us girls tend to wear bras, but on days like today, I choose dresses that allow me to go without. I need a nap from the exertion of merely starting my day, so battling with underwear is not on the schedule.

Finally, I went out to get some fresh air. I dropped off my laundry (via Uber), walked half a block to the park, and sat on a bench. I ended up going a little farther because I tend to push myself when I should rest. Returning home, I was exhausted and had to sit on the sofa for a good 15 minutes before … can you guess? That dang bladder again!

Before lupus, I didn’t give any real thought to the daily tasks of getting ready in the morning. Now, I appreciate every motion — I take none of them for granted.

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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 McRae BNS Writer
Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.
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Kellie McRae BNS Writer
Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.

2 comments

  1. TC says:

    I can totally relate…. not sure if it should be said with a smile or a frown. LOL.

    Yet I’ve discovered by complete accident that form-fitting and tight clothes are good for reducing pain and even boosting physical energy! Even improving tummy problems!

    While they only serve as “improvements” and not “cures,” they definitely help.

    Warm water reduces pain by providing warmth and improving overall circulation, and that’s exactly what form-fitting clothes do for your body as well (and what loose, breezy clothes do not. They make your body warmth escape faster.)

    Exposure to cold air makes both autoimmune-induced fibromyalgia (muscle pain) and rheumatism (joint pain) worse, while warmth alleviates both. (Doesn’t help much with rheumatoid arthritis though, at least not for me.)

    I’m now almost always in some kind of compression stockings/ thigh-high socks/ compression sportswear, even in sleep. I wear higher pressure ones during the day and low-pressure ones for sleep.

    For day-time ones, look for compression stockings designed for medical professional/ service industry professional/ airline staff, or compression bottoms from popular sports brands (Under Armour, Nike.)

    For sleep, the “QttO” sub-brand from the foot-health company Dr. Scholl has a line of compression stockings designed specifically for comfortable sleep. It’s marketed as a “slimming” line for its ability to relieve lower body edema. Somewhat pricey when purchased in the US.

    (Don’t wear high-pressure compression clothing to bed; it will make you too energized to sleep.)

    If in doubt, try on a pair of high-pressure pants from Under Armour and see if it helps. I’ve had the miracle experience of having all my joint pain gone within minutes after putting on a pair (and also having it all come back after I took it off LOL.)

    Note that because compression clothing makes the heart beat faster and raises blood pressure, it is not suitable for those with high blood pressure or heart problems. Consult your doctors first if in doubt.

    I’m in quite a bit of muscle and joint pain today because I had three mouthfuls of iced water yesterday. (Anything cold/ iced is a guaranteed pain trigger for me.) But I still feel pretty blessed and happy. Hope you’re in a similar emotional state as well. 🙂

    • Kellie McRae says:

      You always have a lot of great information. I would love my tighter clothes if it didn’t take so much energy to get into them. While I spend time cold, its usually only when I venture to air-conditioned places. Fortunately for me, I live in a tropical environment (It was 99 degrees today and I actually got hot). All of those tight fitting clothes you mentioned sound warm too. I may have to check out some of those compressions socks though, for some reason, at night my feet like to sorta go numb. They are fine as long as I’m sitting but everything likes to go haywire when its bedtime. As usual, it’s always great to hear from you and I hope you feel better, stay away from those triggers 🙂

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