Sometimes I Choose The Cost

Yes, I’m aware.

I choose the cost, chronic illness


Yes.  I’m aware I’m writing this at 2:44 a.m.

Yes, I’m aware that someone with a chronic illness has to be sure to get a good night’s sleep.

Yes, I’m aware that the longer I’m up the worse the pain in my legs is getting.

Yes, I’m aware that I am dangling my legs over the side of the bed and kicking them back and forth due to the pain and restless legs and the desire to try to distract my nerves – which sometimes works and sometimes doesn’t.

Yes, I’m aware that not getting enough sleep is going to make the pain worse tomorrow.

Yes, I’m aware the Coke I had at dinner tonight was a bad choice.

Yes, I’m aware caffeine and sugar are not the friends of someone with my illnesses.

Yes, I’m aware that I have a lot to do tomorrow.

Yes, I’m aware I’ve caused this to some extent by opting not to take my nighttime meds because I wanted to stay up later than normal. And yes, I’m aware how important it is to take all your medicine as prescribed!


I’m also aware that my husband wasn’t home all day because he had to work 16 hours and I wanted to stay up to see him – which meant skipping meds and drinking caffeine.

I’m also aware that my 3 year old grandson really wanted me to sit on the floor and play a game with him – which meant painful and restless legs.

I’m also aware that those games on the floor are a needed bright spot in the day of someone who’s been stuck in the house for days on end because their body won’t allow them to step foot outside with the current cold temperatures.


I’ve come to learn that people with chronic illness and chronic pain are very keenly aware of how everything affects their body.  Usually more than you’ll ever hear us talk about.

I’ve also come to learn that the choices you make with a chronic illness can often feel like you are only making the best decision you can out of multiple bad decision options anyway.

But sometimes you chose things like the taste of a Coke, a late night, or family time – over the knowledge of what it’s about to do to you.

The reason could be that you just want to feel “normal”, like you can eat things other people eat because their bodies haven’t decided to become their arch enemy.  It could be that staying awake until someone you love gets home from work is needed as much as sleep. It could also be that enjoying family time together was the day’s biggest priority.

Sometimes I just don’t want my life to be dictated by this disease, syndrome, disorder or whatever you want to call it.  Sometimes I want to call the shots.

Being able to call the shots comes with a cost.

Sometimes I just choose the cost.





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20 thoughts on “Sometimes I Choose The Cost

  1. I agree with you, it is 3.11 am eight days after seeing friends and family and I am still paying for it. I am moving in the right direction which is good, I spent most of last week in bed. I rarely go out but it was a busy weekend with people who couldn’t change the dates so it was either go for it or miss out again and I am sick of missing out. It has taken my husband a long time to come to terms with the ‘ cost ” of being sociable but he now understands that is up to me to decide.

    • I’m glad your husband is beginning to understand. There are just times we decide it’s worth the cost and other times we’ll need to cancel all together.

  2. I love this post so much (especially as a fellow coke drinker who knows its bad for me, but sometimes just wants it). Sometimes it is worth the cost because I want to just life my life and not think about illness.

    • I know, right?! We have to consider our body constantly and sometimes we just want what we want. 🙂

  3. I get it. I avoid making commitments on two consecutive days. I also need more time if I will be around people. I went to early dinner with friends, with hugs, lots of new germs, now four days later I am still recovering from this fever. But it was worth it, since I don’t have to do it again until next month.

  4. You hit the nail on the head with…”sometimes you just want to feel normal”. That’s what gets me out in front of my house with a rake, pulling out overgrown ivy. I try to only do a section at a time, but I still pay the price later in the day. It usually ends up with an extra pain pill, but for 15 minutes, I feel normal. Like a productive person. Here’s to pretending to be normal.

    • I pretend quite a bit too, Vera. And yes, I pay for it as well. It’s just so hard when everything within us wants to do something, anything.

  5. I’m about to embark on the “cost”. I am new to Fibromyalgia. (4 months since my first major flare). I am still having a hard time believing this is me. I am going camping for 3 days over Mother’s Day. I know it will be hard but I am not willing to give it up. I have to “see” how bad it is first. As I speak I have nerve pain all on my left side that feels like a bad sunburn. I am checking into a “sleepnumber” bed because my “new” mattress (purchased last August) now feels like a slab of concrete. Ugh.
    I will be throwing my 3″ gelfoam topper in our pop-up camper. Wish me luck. I’ll let you know how it goes!

    • Rosa, I hope you’re able to enjoy your Mother’s Day camping this weekend! Let me know how you like your new sleep number bed.

      • Well ladies: I had to cancel my camping trip. The nerve pain only spread. To my left side, hip, and left breast. I could barely wear a bra or pull up my underwear. I had to make the choice early to camp or not because plans had to be made. As it is…I probably “could “have gone because the pain broke and is now feeling MUCH better, but only “now”..over the last 2 days. I had no way of knowing. So as it is, I decided to have “NO PLANS” for these 4 days except doing what I want to do. Some sewing, planting some flowers, and just enjoying the sunshine. My son said he will “hold” the camping trip for me. It is what it is!

        • Sorry you weren’t up to going but I understand how it feels to have to cancel plans. I still make plans because I think it’s important to plan for good times but they sometimes have to be broken. Enjoy the weekend of doing what you want!