Fair Weather Funk

What would your dream day be like?

    • a day of shopping
    • hiking, swimming, bicycling
    • a day at the beach laying out in the sun
    • roaming around an exotic place without a care in the world
    • home alone, curled up in bed with your favorite book and snack

For those of us with lupus, or another autoimmune disease, a dream day may look much different.

  • waking up pain-free and being able to literally “jump” in and out of the shower in record time, get ready for the day without having to rest, and then go through the rest of the day with the same energy
  • being able to enjoy the sun without fear of repercussions
  • having the energy to shop all day
  • not having to take any medicine
  • being able to walk assistance free
  • waking up refreshed from a good nights sleep for a change
  • not being cranky from dealing with chronic illness

The other day I was silently chiding myself for being a bore. Why didn’t I hike with my husband and daughter?  Why didn’t I want to go camping and running  around like other people?   Why didn’t I have the desire  to travel and visit  friends or family?

Then, silly as this sounds, I remembered I have been in a  battle for 1o years, first with lupus and now with Sjogren’s. Even though the lupus is in “remission” the  lingering fatigue and the Sjogren’s are wearing me down.  Much of my energy goes into the  daily routine, with little  left over, most days.  Stress has also been taking  a  toll on me.  Feelings of regret certainly do not help.

So, here it is, a dream day outside  and I am praying I will have the energy to get a few menial tasks accomplished, a run to the grocery store and  make my husband dinner and a special dessert .

While the  fatigue can be suffocating, I keep feeling  a gentle breeze blow over my spirit that says  “cast your cares upon the Lord for He cares for you”. 1 Peter 5:7

I know many of you struggle with the same thoughts and challenges.  I pray the living  God will meet us all in a special way this week…Leslie Rose K

Next time, Song of Solomon 8:5 ESV, and how it carried me through some of the early, dark days of my diagnosis.

leslie@dominateyourdiagnosis.com

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One response to this post.

  1. Posted by Brenda on June 6, 2011 at 6:32 PM

    Well you certainly covered exactly what it feels like to have an auto immune disease Leslie! I so often get mad at myself because it takes me forever to shower and dress and then I often times need to go rest for a while afterward. I hate who I’ve become and I mourn who I lost in myself. I miss those care free days of working from the time the sun came up and well after the sun went down. Going to bed tired, but feeling good. Now I am just lucky to make it through the day some days. Between the battle with Lupus and RA I feel as though I have no strength left to battle the pain of the Fibromyalgia as well as the fatique that comes with these diseases. I wish that I had the energy to keep up with my youngest son like I did with all his brothers, but I don’t. Part of him understands it, and another part doesn’t. I can’t say I blame him either for getting a little fed up with me. I get fed up with me!! I’m tired of being tired and hurting all the time. But there are good days too and that is what I must remember. Yes I do have a lot of bad days, but when I have a great day it is awesome!!! Would I like to have more great days? Of course, but I am thankful for the days I do have. I know that I’m alive, I know that there can be better days sometimes. I’m not giving up just yet!!! I am a fighter even though I feel like the fight has gone out of me somedays. God keeps me pulling myself up by my boot straps and moving on with life. I hope that God keeps you all motovated as well. He is wonderful and loving God!

    Reply

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