The New Normal With Lupus: Recovery Days

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Today is a “recovery” day for me. Recovery is what I call sleeping in as late as my tired body wants, awakening slowly and gently.  No alarms on these rare, but necessary days.  A hot cup of coffee in a soft chair in the silence of my living room. I sit there until my mind’s fog clears into the day ahead. It is my day off from my job where I work very long hours. 

Before Lupus came into my life, my days off were filled with errands, house cleaning, and visiting friends and neighbors. Now, I live my days with a chronic, life-long illness. Six years ago, after being very ill, I was diagnosed with Lupus, an auto-immune disease. Little did I know that my regular activities would all but vanish as my days off were displaced with profound exhaustion. I really struggle now on these days even to get the energy for a nice, long shower.

Now, it is a physical battle to catch up on rest and sleep. Yet, resting at home and sitting in my chair is a “new normal”, a mental battle because I want to do so much more than I can. I am surrounded by a messy house where lots of things don’t get done. There is just no energy. 

My morning cup of coffee no longer snaps me into motivation. It is now a necessity to just wake myself. The morning dishes and dirty kitchen counters are usually still there when our three boys get home from school. The errands primarily get run now by my very energetic and extremely helpful husband.  He does the lion’s share of the housework and cooking. Nothing is ever done in one fell swoop like it used to be. If I clean at all, it is just one room. The dogs get walked by the kids because even a walk on a sunny day seems like an insurmountable climb. I keep up with doctor’s appointments but rarely make social visits. Friends know I am busy with work and the kids, but I wish I could do more like I used to.

That is why I call them “recovery” days instead of a day off.  I need so much rest now. Recovery days are filled with the mental and emotional battles of guilt and fatigue. I hate the messy house, the unfolded laundry, the tasks I want to help with, but can’t.  It all comes at a price.  I know rest is paramount to my well-being, yet I struggle with how little I do. I fear that it looks like laziness or lack of motivation. My unending, daily, to-do lists now can take me weeks to accomplish. It is hard to rest when you are always feeling so behind.

My boys have become accustomed to my new type of mothering with Lupus. They probably don’t even remember the dynamo I once was and that makes me sad. The scrapbooking and hikes have stopped. The bike rides and long days in the pool are fewer. The boys have learned to know when I am having too much pain or fatigue to participate.  They know if I am asleep, to let me rest and not to wake me.  They move the laundry for me, cook their own after-school snacks and pick up the heavy loads for me at the grocery store. They come and sit with me instead of me going to them when I need them near. 

They are great boys. They know that “the sun makes mama sick,” so I have to stay indoors most of the time, which is a big change for us. Now, when I can get outside, I carry an umbrella around on sunny days to help me stay in the shade.  Gardening is one of my favorite activities so my husband and boys have learned to move around 2 giant deck umbrellas for me.

At the pool, I sit under an awning and watch them splash around and have their fun, unable to join in very much now.  They don’t know what Lupus is really, but they know the fatigue and the pain and that I have good days and bad days. They watch me take 20 pills a day at mealtimes. I certainly wonder what they must think of all this.

I do know that if I stay rested, despite the Lupus, I will live longer and with a higher quality of life.  Still, a sense of guilt sits alongside me in my easy chair on these recovery days. So much needs to be done. But I love my family and I want a long life with them and their bright futures.  I just may have to be the mom that carries an umbrella with me in the sunny moments that await us all together. It is my new normal. I have to get to a good emotional place with what I have to do to take care of me.

Moms do so very much.  All you moms out there know that this is hard work.  How would I ever know that all of this hard mama work was going to be done from just resting and taking care of me?  So, these days, I recover and I rest. These boys will grow into men who will need their mama, no matter how old they are. I look forward to graduations and weddings and grandkids.  In the meantime, I just have to sit here, in my chair and conserve precious energy for that future. 

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I am born and raised in Cincy but was originally an East sider until I moved to Clifton in the early nineties where I went to college. I reside in the Clifton Gaslight with my hubby of 20 years and our 3 boys. I am a full-time nurse. I consider myself an urban homesteader with a large veggie garden, compost, and 5 rain barrels. I absolutely love my life and community in Clifton. My life with 3 kids at 3 different schools has gotten busier than ever. 2 of my boys are teenagers too, which is quite the odyssey. We are home bodies who focus on life around the family and the 3 dogs. I couldn't be busier but I couldn't be happier!

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