Life with chronic illness...

Watch this first: https://www.facebook.com/ChronicIllnessOnThemighty/videos/1405166782838399/ 

Real talk ahead. Not whining. Just shooting straight. 

This video is my new normal...I do great at short trips & I'm doing better about longer days, but by long I mean 4pm. The trip to six flags took 4 muscle relaxers, 6 pain pills, an Ativan, and countless park benches--But I go for my family. The kids ride & Jasen & I move from park bench to park bench. The doctors tell me that the walking around is good for me, and my pain should be better with movement--they lie. 

I want desperately to be old me...the one that was constantly going & could live off of 5 hrs sleep. The one who could turn up in the club until 2am and then house party after. The one who could do all of that and still wake up and fix my hair & makeup. The one who could ALWAYS be counted on to keep conversation going, and had all of the friends. 

Speaking of hair & makeup...the decision to stop wearing makeup isn't some feminist choice. It's because I literally just can't. I can't fix my hair like I want, because I can't keep my arms raised high for that long. And since my hair looks like I rolled out of bed most days, why bother with makeup? I look at pictures prefibro, and long for days when I looked put together. 

And the brain fog--dear god. I'm about a year from having a PhD & I forget where I'm going & why at least 4 times a week. I text Jasen to ask for words that I can't remember. I reword sentences because I can't think of the word I need & spelling...don't even get me started. I'm ashamed when I use the wrong word, or spell something incorrectly, because I almost have a PhD, and shouldn't be this dumb. (I'm much more patient with others who misspell than I am with myself.) 

And while everyone is cheering on my weightloss, the truth is that I'm terrified every time I lose another pound (like this morning) because I should not be losing still. Seriously. I eat ALL of the crap, I should not be losing, but I am, because my pancreas causes malabsorption, and my bariatric surgery causes malabsorption. The people on the CP boards are terrifying to look at, and I don't want to look like them...so every pound lost is one pound closer. 

I make plans that I then have to cancel, because my body just can't do it. The people I hang out with the most are also chronic illness sufferers (in many different forms) because I've found that they get it in ways that healthy people don't. I know that I can text these people & say just kidding--my body sucks--and their feelings won't be hurt. I know that I can request that we chill at my house in our pjs, and they are cool with that too, because they too didn't want to get dressed. If I've invited you into my inner circle, it's because I've observed compassion and understanding from you.

And that snake oil you are selling...oh how I want it to work. I deeply desire an oil that will make my anxiety less, a drink that will clear my brain fog, a patch that will ease my pain. I would bankrupt us trying all of the things, but my doctors don't allow it, because any added product has the potential to counteract with my medications and cause organ failure. 

And speaking of bankruptcy... I want nothing more than to work a full-time job so we aren't living week to week. I want to pay bills without hoping there's money left for groceries. I'm honestly not sure I will ever work a full time job again. Not because I don't desperately want to, but because my body simply can't. There's a chance that I will finish my degree, and never be able to use it, as my body continues to fail me, and I continue to add diagnoses to my list. Every appointment, every new specialist, adds to my list and increases the daily anxiety I have about my body. 

I am reminded of Maya Angelou's poetry when I think of my life--"And still I rise." Although she was writing in regards to race, it seems applicable to life with chronic illness. I could lay in my bed drowning in the misery of chronic illness, but I choose not to---I choose to rise. I put one foot in front of the other, I celebrate my successes, I do my best not to drown in the anxiety and fear of how my body will betray me next. I rise. 

This is my new normal.