The Pain of Pleasure

The Pain of Pleasure

Some days are good energy days, and some days are low pain days. Sometimes there are days when you are like, “I am going to throw it all to the wind and get what I get.” Recently, I took a trip to Laos and I learned a very valuable lesson: Ask about elevators.

Hotel stairway - pain and pleasure
I had a choice: see the pain or the pleasure in the journey. (Photo by Kellie McRae)

I am not the only person who has taken something that should be pleasurable for granted. I arrived at my hotel to find that not only did it not have an elevator, but also my room was on the third floor. At hotel number two, my room was on the fourth floor. As bad as this sounds for those of us with energy and pain issues, I chose to find something beautiful in the journey. This photo is from the fourth floor of my second hotel.

The city was lovely, the people even lovelier, and I had a great time. However, my body is paying dividends for the lack of modern conveniences. Then, I arrived back in Thailand and spent an entire day at an event and then at the botanical gardens. Can I just tell you that my body was absolutely not amused. My mind and spirit, however, were just the opposite.

I have shared in other posts that I have become basically a cave dweller and that my attitude has been suffering. In my attempt to find the light in my darkness, I have decided to get out more and to choose a better way of thinking.

I notice with many of my fellow warriors, we go out today and have fun and tomorrow pay dearly. I and many others have that feeling of why bother to have a good time when your body will punish you for it. Let me say this: My body is angry as I type this — really angry — but my spirit is soaring. I feel like I did something good for my mind and my soul.

I keep reminding myself that lupus is a chronic pain disease, so no matter what, pain is going to show up. It doesn’t matter if I dwell in my cave or get out and try to enjoy myself.

One of my loyal readers recently commented, “You must find that place inside yourself where nothing is impossible.” This spoke to me; sometimes that place is very well-hidden, but determination will source out a lot of things that we never thought we would find. I am in search of that place. I am on that path. And yes, I am in pain, but I am also experiencing pleasure. I get one life.

I did not choose to have lupus, but I definitely have a choice in how I deal with it. Some days are more difficult than others. This thing is a mental, spiritual, emotional, and physical challenge, but I have my proverbial sleeping bag, my flashlight, and my emergency food supply as I look for better days and better ways to cope with my pain. No matter what, no matter how low I sometimes feel, I hope and pray that I never stop looking for the joy — the pleasure in spite of the pain.


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.


  1. Colleen Souders says:

    Like you, before Lupus I was like a Kansas tornado only not in heels since I was a nurse. I was always busy with some kind of project and on the go. That was before Dec 2008 when Bacterial meningitis or a very stressful event on my life before that kicked the genetic didposition for Lupus into full blown lupus.
    I learned the hard way
    that this disease means business. I have to get out and take trips for my psychological well being. I’ve learned to rest up the days before a trip and take all my ammunition (meds,sunscreen,hat,comfortable shoes, pillow, heating pad,support hose and compression gloves) Like my rheumatologists ARNP says “Don’t leave home without prednisone”. My husband & I just went OOT fo the weekend and I was tired at the end of the day but I didn’t have to take any extra meds and didn’t have leg swelling plus I didn’t crash for 2 days. I attribute it to the fact that I started the Lupus anti-inflammatory diet 3 weeks before and I feel better: less fatigue, joint pain and less gut problems(heartburn,pain & reflux).
    An added benefit is weight loss as I’m not as hungry. Yay.

    • Kellie McRae says:

      You said a mouthful Colleen with figuring out that this disease means business. When I first got it, I was like, I’m going to fight every step of the way and then my body laughed at me and showed me who was really running the show. Preparation really is the key to being able to find pleasure with this thing. If you don’t prepare…forgetaboutit! lol You WILL pay but I am glad that we still do what we can to make sure that we find some pleasure. Its not always easy with how unpredictable things can be but we still must try. I hope you all really enjoyed your weekend out of town.

  2. Rob O'Sullivan says:

    Well done Kellie! You have the same attitude and approach to Lupus that my late wife Ingrid had. Embrace every moment of your life no matter how good or bad and find that potential within that never gives up in the face of adversity but always finds some happiness and thankfulness. You, like Ingrid inspire others and are creating a legacy that will never die.

    • Kellie McRae says:

      Aww, thank you Rob, I”m sorry to hear that Ingrid is your late wife as opposed to her still being here inspiring more people. I agree, we really must embrace every moment. I remind those around me that even healthy people are not going to make it out of here alive lol so let’s live it up as much as we can.

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