The Worst Things About Lupus Flares

1. Disappointing my husband because I’ve been feeling good for so long.

2. Fear that I’ll stay this way for a long time and have it happen more frequently and have to quit my career.

3. Physical weakness so I can’t really DO anything.

4. Fear of another serious attack on my body – the stroke was pretty traumatizing

5. Disappointing my husband.

I don’t know what else. I just feel depressed and felt like venting. Thanks for listening.

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10 Responses to “The Worst Things About Lupus Flares”

  1. ChronicChick Says:

    I know exactly how you feel. Isn’t it odd how, even when we are the ones in pain, our concern is for our spouse who is often as bemused as we are in how to face chronic illness? I do not have lupus but I do have an autoimmune disease which resulted in me having to resign from my job last year after a hospitalization. After four years of waiting for Damocles Sword to fall, it was almost a relief… if you don’t count the now daily fear of how to pay for the luxuries in life like eating and living indoors. Flares pass. Some last longer than others. Reach out. (And if I can think of any other platitudes I’ll write back 🙂

  2. SanityFound Says:

    One day at a time my friend, glad you are sharing and thankful that I can listen.
    Hope you are feeling better!

  3. amberfireinus Says:

    OK, you must be reading my mind. Those have been almost my EXACT thoughts.

    Whilst no person can ever exactly know what another person is going through, I have a pretty good idea from my own experience. It sucks.

    Yesterday I had to go and purchase special tools to help me open simple drink bottles, as my hands are to weak and crippled now to do so. It made me want to cry.

    I find it helps to take as much positive control of yourself as you can when you feel this way. I go to my husband and give him a snuggle. Tell him how much I love him and thank him for being so wonderful. I focus on the good things like the beautiful day outside, or watch a comedy to lift my spirits.

    Depression makes the flares worsen. But of course Im preaching to the preacher so Ill stop.

    I want you to know that Im with you sister. Its hard having this body, along with this mind. It seems so unfair. Yet, God has a plan for us both. Maybe his for you is to write……….

  4. psychscribe Says:

    Thank you so much all of you…For me, reaching out is very, very hard…each of you in your own way has helped me by your loving support. Blessings to all of you…

  5. OrSoSheSaid Says:

    You’re pretty darn good at coming up with articles, quotes, and advice, and you like to write.I have no idea if this is your style or interest at all (or maybe you’ve already thought of this) but what about writing your own account of whats it is like to live with Lupus?

    I know if there is something going on in my life I like to read up on it as much as possible, and it’s always nice to come across first hand accounts. They just seem so much more honest and relative.

    Either way, you’re talking about it here, and you can already see that others can relate and understand. Good for you!

  6. psychscribe Says:

    Thanks OrSoSheSaid…venting here is enough for me right now…I’m trying to discipline myself enough to create my novel..but your advice is good and appreciated…

  7. Woman without a Cause Says:

    I understand completely! It is so nice to find someone who knows what a flare up does to a body, your mind and your soul. I continually strive to do right by everyone else. Husband, children, home, just the usual things. It takes such a toll, I don’t complain, not to them.
    Today, my body is preparing for a ‘flare-up’..OH JOY –

  8. psychscribe Says:

    Well as you all may have read in a more recent post of mine, fibromyalgia and arthritis are now added to my diagnoses….and I’m still feeling bad…and it soooo helps to have kind and understanding and supportive friends like you to help…the helper….I’m not used to this…but it really does feel great to reach out like this…not to another professional (I quit the therapy) but to friends who know what I’m going through…one last question: Amber, where do I get the aids you’re talking about to open bottles and things? Thanks!

  9. amberfireinus Says:

    I bought them at Walmart believe it or not… They look kind of strange, but they sell them in the Kitchen department. Pampered chef also sells them.

    Im so sorry. I wish you didn’t have to go through this pain. Im glad however that in some way our friendship may help you just a little… even if it is to remember to smile once in a while.

  10. psychscribe Says:

    Thanks amberfireinus. And yes, your friendship does help… a lot 🙂

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