“How Do You Feel Today?”

Almost everyday I am asked the same tiring question, “How do you feel today?” My mind starts spinning and every pain, the exhaustion that healthy people cannot relate to, the fear, and every sensation, comes to the forefront of my mind. I begin to feel everything at once and at times it is overwhelming. It’s a list of symptoms I do not want to spew out. Some of which I was able to temporarily “forget” as I immerse myself in my daily tasks (especially at work). The answer I am sure is more than the questioner bargained for. My answer? A simple: “Better,” “Good,” or “Fine.” Depending on who it is, sometimes I will just name off the most pronounced symptom of the day but leave the rest unsaid. I’ve had a couple of friends tell me that I can tell them everything, they do not mind. Although I am extremely grateful for their offer that touches me deeply, I do not want to impose on them and perhaps give them more than they expected.

Several weeks ago I met a woman who has Lupus and Kidney Nephritis. She is currently undergoing dialysis and I believe is on a list to get a new kidney. We only had about 15 minutes together as my family was on our way to meet for an early Mother’s Day dinner. It was awesome to finally meet her as we had been emailing each other for a couple of weeks. Although we made plans to meet before, those plans got cancelled due to “Lupus.” Most of the time she was the one who cancelled and apologized profusely for it. “Don’t worry about it. I understand.” I tried to make her feel better. I am usually the one that cancels plans due to Lupus so it was a change to be on the other side. It was nice to be able to understand and tell her that it was okay, we could always meet on another day.

C was feeling good that day and said she gathered a bunch of art supplies that she wasn’t using and was very excited to give to me. She hoped that I would love it and asked if she could drop it off. I was at my sister’s house that day. My sister was the one that wanted me to talk to C. She hoped that it would somehow benefit me to meet someone else that had the same health issues that I did. My sister asked C, “How are you feeling?” C began to tell her how tired she was, that she was going through dialysis several times a week, taking care of her children, and named off a few more symptoms she was going through. My sister listened intently, asking more questions to gain a better understanding of C’s answers.

My mind took me back thirteen years ago when I was experiencing my first major flare. My sister seemed to believe that everything was in my head. She would ask me how I felt but when I told her, she would scold me. She met a “doctor” who told her that it was my fault that I had Lupus. She told me I should get a second opinion. I told her I already did (she really wasn’t involved in my appointments or procedures/ tests). I can’t recall anymore everything that she said to me but I stopped talking to her about my health. It saddened me that my own family doubted me (and she wasn’t the only one). As she was listening to C, I wondered if she finally “got it.” That it wasn’t all in my mind but that there were other people that felt like I did. Another thing that I liked about talking to C was that when she told me what she was feeling, I understood what she was talking about. She didn’t have to explain herself. I wondered if my symptoms were “validated” in my sister’s mind now that someone else she knew told her the same things that I did.

Although I do not like to talk about how I feel to people that won’t understand, I felt like I could talk to C if I wanted to. Which brings me to the main point for this post. (Ah, finally!) 🙂 I have a question for all of you fellow Lupies and others that have an autoimmune disease, or any other chronic disease: “How do you feel today?” If you choose to answer, you can list off as many symptoms and feelings that you want. I promise, I can handle it. 🙂 And it doesn’t have to be limited to just how you feel today, you can respond with everything that you go through due to your “disease.”

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3 Comments (+add yours?)

  1. Tala
    May 26, 2014 @ 13:44:15

    Reblogged this on Tala's Tracks and commented:
    I can’t really add to this. It speaks the truth on it’s own…

    Reply

  2. lupusreallysucks
    Jun 08, 2014 @ 08:38:07

    Not being believed when you are sick with lupus is the lonliest thing in the world. Others don’t usually ask me how I feel except maybe during a particularly bad time. I could actually take that question two different ways. One would be a list of symptoms I’m currently dealing with. The other would be how I feel about my life that day. With lupus, one is as unpredictable and variable as the other.

    Reply

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