Fun fact: IRL me and the “me” you see on social media are two different people. Big shocker, right?!?
Over the years, I have made a conscious effort to stay as positive and uplifting on social media as I can… but the truth is it gets tiring and it is costing me more spoons than I have.
Over the last half of a year or so, my Spoonie life has started to go down hill. I found out that I have Fibromyalgia on top of the other goodies that my body has so graciously gifted to me… and with Mr. Chaos’ abrupt layoff from his job (of almost ten years)… the shit has been piling on [being an adult frakkin’ sucks] and we cannot seem to catch a break. With that has gone my ability to keep up with posting content consistently, whether it’s been here on the blog, on my YouTube channel, or posting pretty makeup photos on Instagram… and I am sorry.
I would love to be able to come up with awesome excuses, like working on secret projects 24/7, or mastering world peace, or living a double life as a super-secret agent… but alas, my spoonie life has gotten the best of me.
It dawned on me that I have not had a single day, in over six years, without being in some kind of pain or another. While I am grateful that I have a fairly decent pain tolerance (a learned skill, let me assure you), there are times where it gets too much, and my body just decides to throw me the finger and pull the rug out from under me…
…but you don’t see that side of me.
If you looked at my Instagram feed you would see this:
A feed filled with pretty, well-posed/polished makeup photos and random flat lays of makeup products with a speckling of life update posts or random other photos. Nothing too constant to remind those who don’t follow me or who don’t care to read the captions that I am in fact a very ill person… and I am good at game facing semi-normalcy.
Thankfully, I have a wonderful, tight-knit group of friends and family who kind of understand the crap I go through, although the only person who gets it is Mr. Chaos because he’s my constant companion 24/7. Believe you me, I would not be here without him, and I am in constant awe of his strength, courage, and overall awesomeness.
You guys don’t see the 95% of the time when I am completely and unapologetically [and sometimes pitifully] myself. Multi-hour baths just so my joints can find an ounce of relief from pain., The syncope spells where I bounce my head off of the floor. Days to weeks of me not being able to keep normal food down. A perpetual cycle of insomnia and fatigue. Piles of medical bills that cause anxiety attacks. Or the days I spend supine in bed or on the couch knocked down with multi-day migraines that more often than not brings me to tears. Intense fatigue interspersed with tiny spurts of beautiful creativity is how I choose to think about it. Somedays I use a cane, others a wheelchair, and thankfully some I can walk unassisted – albeit a bit wobbly from vertigo. The infusions/ chemo I get every few weeks. If you see me in public, I am 99.5% always wearing some time of face mask to keep other folks and their lovely little germs at bay. I am constantly in pain. Some days are better than others, but the pain is always, ALWAYS there and has been for over six years now. I have become a master at faking feeling better than I do – or as I like to call it, game facing.
I am afraid and a little embarrassed to show you what it’s like to be… well… me. [wubba lubba dub dub] Every time I post something that’s not beauty or fashion related on my IG, I lose dozens of followers. Sometimes, I can’t post for weeks at a time and I lose hundreds. Add to that our lovely little algorithm issue and the mighty shadow ban and well… it all gets depressing. Being a not-so-fond bedfellow with the elusive stupid head-gnargle, depression, when it piles on as it has — it hits hard. I have been trying to make a conscious effort this last year to take my posting online more seriously grasping for that illustrious INFLUENCER status. Fake it till you make it, right?
I am unable to have a regular job as my day to day life is so unpredictable. I had to step away from my small business, from my makeup clients, and from my rockstar life. I have turned to social media, blogging, etc. to try and make at least a little bit of money … and with everything being what it is, that too, has been making things harder.
What I’m trying to get at is honestly just to say — I’m not exactly like the positive images you see on my social media feeds. I mean, I am still me… but I am not showing you the bigger, bitter picture of who I am. I am trying to trick my brain into focusing on the good than the bad and it spills over on social media at times. I’m sorry that I’m afraid to open myself, and my world, up to you guys. I know that I am not the only one out there who feels gutted, uninspired and defeated. For me to keep my life behind the magic curtain, it feels like I’m lying to you. Slowly, I’m trying to be more open with you guys, my beautiful, brave, and talented dah’lings. To show you the not-so-great aspects of my life as a youngish woman battling against her own body every second of every day. To show some of you out there going through similar instances that you are NOT alone.
Please keep in mind that I am not doing this for pity or the age old battle of “my horse is bigger than your horse” or Pauvre de moi — I’m tired of hiding behind this wall of pixelated perfection and flattering falsities.
When I started jaeCHAOS, I made my it a point to stick to a mantra. You know the one… STAY POSITIVE AND BE AWESOME. For me, I’ve tried to fill my channels with awesome and positivity as much as I can… I need to do better. You deserve better. For realsies.
It’s okay that I am not okay. I shouldn’t be afraid to share the fact that life sucks sometimes. I am human.
In closing, I would like to tell you guys a few good things that have been going on in my life. I still have the wonderful love and support of Mr. Chaos [ who keeps me out of trouble and advises me to lay down if I get too wobbly]. One of my favorite BIG make up brands reached out and wants to work with me. I get to witness some of the most colorful sunsets on a daily basis. And I have two beautiful puppyducks who love me unconditionally and let me snuggle them whenever I need to. I have a great many things in my life that I am very truly thankful for and it is those specks of light amidst the darkness that I cling to.
… and before I forget – I HAVE YOU GUYS! Thank you to those who have relentlessly stuck around through all of my nonexistent moments. I want to be better for you guys, and while it might not happen overnight, I want to show you the kindness and continued support you’ve all shown me.
I have a need to balance the awesome things in life that I show you with the bad things that I don’t.