Lupus Diary #1 Being Flexible with My Normal

It has been a few years since my original diagnoses and in this time I’ve learned quite a lot about what it means to have a chronic illness. I also have a considerable amount left to discover. After landing myself in the hospital for a while for multiple Pulmonary embolisms, I quickly strived to find my new normal. I needed to know what to expect from each passing day.

After months of ‘Oh! I feel great! This must be my new normal!’ to dealing with my severe lupus issues, I’ve discovered I will most likely never have any type of ‘normal’. This depressed me and caused me quite a bit of anxiety for at least a year. I was afraid to make plans because I wasn’t sure what my normal would be the following week. Would I be up for an hour at the gym or would I be fighting my chronic fatigue and light sensitivity? I will never know. In example; New years eve I was hoping to do some type of exercise every day of 2017. I was beyond excited as my normal had been moderately okay for about 3 months. I had the flu a few times, but no serious problems. To my surprise, I woke up the 1st with an awful feeling. I went to my doctor only to realize I had multiple infections, serious concerns from my DR, and as of today, the 11th, I can barely get myself out of bed. My chronic fatigue strikes again, leaving me exhausted even after 9+ hours of sleep. This was in no way my normal new years eve, but I’ve accepted it as my current normal and I’m doing my very best to be a parent, wife, and blogger. I know I’m missing deadlines, and I know I’m not putting as much effort in playing with my son as I did a few weeks ago but taking it easy is required when your normal isn’t the best.

Why does this bug me less today than it did a year ago?

1. I know that rough patches happen. This is no fault of mine and I need to take care of myself if I want to be there for my son later.
2. I know that when my medications have a chance to do their job, I will be better. Even if the side effects aren’t fun, I’ll be okay.
3. I know my normal will change again.
4. I’m doing my best.

Even when I feel like my health and life are out of control, I have to bring myself back to reality. This is my normal, and while it’s consistently inconsistent, it’s mine. Knowing this, I make plans but I acknowledge that I may not be well enough to make it. I’m flexible with my normal and my family recognizes my changes and bends with them. It’s in no way perfect, but normals don’t have to be steady. Once a person or even a family recognizes that fact, it gets easier to deal with Chronic illness, at least in my opinion.

If you have chronic illness, how do you deal with your ever changing normal?

I’m a geek blogger, mom, a wife, and a reader. My family and I are currently living in the beautiful state of Colorado. I started my blog after I landed myself in the hospital for multiple pulmonary embolisms. It took over a year to diagnose me with lupus among other things. It’s been a long journey but I wouldn’t change it for the world. I read all genres and I write about anything I feel like; From my issues with Lupus/RA/pulmonary embolisms to what is going on in the book world. Every day is a new adventure!
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12 thoughts on “Lupus Diary #1 Being Flexible with My Normal

  1. DJ Sakata says:

    Love this post – Lupus is insidious and tends to pop up like a nasty ex – when have the least time, energy or inclination to deal with it – hugs to you precious. Arm yourself with long sleeves, sunglasses, motrin and hats – lots of funky hats – that is how I deal 😉

  2. I love that you’re bringing attention to Lupus and chronic illnesses. Up until my sisters diagnosis last year I didn’t even know what Lupus WAS!

    This is very much what my sister describes. She’ll be on top of the world one day, only to feel like death the next.

    It sounds like you’ve got a great team of doctors looking out for you, remember to stay thankful for that. <3

    I look forward to reading more about your Lupus Diary in the future.

  3. Martin Kimeldorf says:

    I found solace and comfort in ancient poetry. i wrote a book about it: Sipping From The Rubáiyát’s Chalice
    My Journey with The Rubáiyát of Omar Khayyám

    If you’d like to see a copy I’m very happy to share with you…perhaps you’ll find something of use in it.

    • I’m very sorry, but due to medications and my eyesight getting bad I don’t accept ebooks anymore. I’m hoping it’ll get better soon and I’ll be able to, my kindle hasn’t been charged in a long time!

  4. Milan says:

    I hate how up and down Lupus can be. It’s hard to have a stable life when one day you feel like you can run a mile and the next you can’t get out of bed. To answer the question, how do I deal with it? One day at a time.

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