What I Post on Facebook Versus My Reality With Chronic Illness

We all know that what we see on Facebook isn’t always what exactly happens in real life. Everybody posts the good stuff. They want to show off, show the progress that’s happening in their lives, and boast about the highlights of what’s happening in their life. Well, here’s the inside scoop of what my reality actually looks like vs. what I like to show on Facebook.

When I’m Put Together vs. My Everyday “Sick” Look

Anytime I go out in public or have people come over, I make sure I look good and nine times out of 10, I post a selfie from that day because I feel good. I feel like garbage 99 percent of the time, so no point in giving people a visual of what I’m actually feeling on my down days. I’ve heard “but you don’t look sick” so many times. Trust me, if you could sneak a peek at me while I’m at home alone, you wouldn’t be saying that! And there’s a reason for that — I use a lot of my energy to look good because it helps me feel good. So why use up that energy on days that I’m A. not feeling well and B. sticking around home anyway? I’ve limited the audience to a very select few who get to see me on my terrible days. It’s not how I want people to see me.

To get ready for a day out or for a visit takes an insane amount of energy. Any of you who deal with a chronic illness or pain totally feel me on this one. I can’t simply jump in and out of the shower and get ready quickly. My routine takes a long time as I really need to pace myself. Simply standing in the shower for more than five minutes winds me — forget the days I need to actually shave my legs! I’ve needed to put a chair in the bathroom to do my hair and makeup. I even get tired holding my arm up as I dry my hair. My outfits are carefully chosen, making sure I wear something that flatters me as my surgeries have left me with many lumps and bumps. I always need to rest whether that be just sitting down or sometimes even laying down, as this entire process exhausts me.

Some of you may say, “Well, why waste so much energy?” I’ve come to discover, for myself anyway, that if I’m always in my pajamas and not put together, I feel sicker. I do try to at least get dressed on days that I stay in. It doesn’t always happen, but even just putting jeans on helps to change my mindset from being ill to just really tired.

Going All Out For Projects vs. How I Pay For It The Next Day

I’ve always loved projects. I love learning new skills. And although I’ve had to put many on the wayside because of my energy levels, I still need to indulge in them from time to time for my own sanity, even though I know that it’ll cost me greatly in energy.

Just the other day, I decided to try my hand at making marinara sauce. I got the recipe from an Italian, so it’s got to be the real deal, right? The amount I made came out to about 35 liters which was way more than I anticipated, but we’ll be stocked for pasta and pizza sauce for a while now. It was a delicious success! Thing is, three days later and I’m still exhausted from it. I loved making it though, even if it means I’m out for the count for the next week. I love the aftermath of a finished project — is there anything better than seeing a task be completed?

I knew that this would tire me out, but it still surprises me when I get knocked out for so long from something that in the past a good night’s sleep would’ve cured.

Going Outside With My Daughter vs. The Rest Of My Day With Her

I like to share a lot of pictures of my days with my daughter. Although the plan was to go back to work once my maternity leave was up but plans changed when I was diagnosed with ultra short bowel syndrome. I am very much enjoying the extra time I’m getting to spend with her, but any of you who have spent any amount of time with a toddler know that they never stop. Like ever. I wish I could do more with her. I wish we could spend more time outside and on the play structure. But after 20 minutes max of playing outside, I’m tapped out. I physically am unable to continue. The rest of the day is spent watching her play from the comfort of my couch.

I’ve tried play groups, but chasing after her for two hours is impossible. I’ve looked into swimming lessons, but I can’t go in public swimming pools as it could cause me to get an infection. We have most of our play dates here as I know the environment and I can more or less control it.

Thankfully our living room closes off from the rest of the house, so we spend our day in there. Me on the couch and my daughter playing with her toys. She is a very independent child and is perfectly content playing on her own. I really wish I could keep up with her, but it’s just not possible.

Events I Go To vs. How I Prepare Leading Up To The Event

I love sharing pictures of events I get to go to. It gives the illusion that I do have a life sometimes. What you don’t see however is how exhausting the smallest event can be for me. Each incapacitating me for at least a couple days afterward.

Being chronically ill has changed pretty well everything in my life, but I still do my best to make it to events such as concerts, weddings, trips, etc. I do however have to plan ahead for them differently than I would have previously. I went to a concert back in July and literally stayed in bed until supper time so that I would have the energy to stay at the concert as long as possible. At weddings, I unfortunately don’t have the energy to dance anymore, and I miss it, but I stay as long as I can and at least try to enjoy the dinner. And my trips so far are planned around leaving the hotel mid-morning, napping for three hours in the afternoon, and returning by 8 p.m. for the night. None of these are ideal, but if it means I get to enjoy these moments, then it’s what I need to do.

My Family vs. My Family

I brag all the time on Facebook about my family and it’s the same in reality. My husband is the most loving, caring and supportive man I could’ve ever asked for. Those pictures of my daughter always smiling, that’s pretty well how she always is. My family brings me so much joy and happiness. They keep me grounded and they give me hope for the future. There’s no point in showing it any differently on Facebook because they’re already pretty freakin’ great!

Follow this journey on A Gut Feeling.