Unless you have a chronic illness, you have no idea what kind of hell it can truly be.
You feel like sh*! on any given day, any given hour in all honesty! Some months you have more bad days than good and you constantly feel like you are letting your loved ones down. Like today, my wonderful husband and I had planned to go to the Holocaust Museum. We got a late start because I spent the morning fighting with my insurance trying to get a vital medication approved. When I say vital, I mean vital… it allows my esophagus to behave and actually accept food and drink. My pharmacist is a wonderful man, and since I’d been without it for so long, he filled it for me and said he would deal with insurance later. We picked it up on our way to the metro and I took it right away. Unfortunately, I found out as the day progressed that it was going to take some time for it to begin working again.
Well, we got into the city just to find out that all of the museum tickets were gone for the day, so we were just going to walk around and take pictures. I’ve been a photographer since as long as I remember and now my husband is showing interest in the hobby too. Before we started our walk, I asked for a sit down so I could take a few of my medications in hopes it would settle my stomach enough that I could at least have a snack for some energy, but it went south quickly. I ended up vomiting while sitting on a bench in the middle of the DC Mall… I was ready to rally and continue our day but my husband seeing me sick, wanted to go home. I can’t understand how embarrassing it has to be for him to sit back and watch his wife throw up into a ziplock bag in public none the less. Once again… the chronic illness ruins the day. I told him I was ok, I was willing to rally because I wanted to be out of the house and most importantly, I wanted to spend time with him. I thought he’d be proud of me for being willing to power through even though I didn’t feel well, I haven’t felt well for days as a matter of fact. But for him… the day was over and I felt defeated.
Readers, please don’t get the wrong idea about my husband, he’s a wonderful man, he’s a war hero and continues to serve his community now as a Police Officer… he’s MY Hero… right there with my daddy!!! I have no doubt that he loves me very much and I love him very much, but this past year almost, I’ve been the sickest I’ve been since we met and it’s been a strain on our marriage, I mean, how can it not? But we are committed to each other, our marriage and the vows we made before God and our friends and families. There is a reason I put such emphasis on the word SICKNESS while saying my vows because I knew times like these would arise.
This is what someone with an INVISIBLE chronic illness AKA A Spoonie looks like… Looks can be deceiving and you never know what someone maybe hiding behind a smile. I can’t tell you all how many times I hear… Well you look great… you don’t look sick… Well thanks but I am and I currently feel like crap but thanks anyway!
So what the HELL is a Spoonie? You know those days where you feel so very frustrated and you may say something like… “I have 0 F’s left to give.” That’s how spoons are to the chronically ill. When you are having a particularly hard day, you may get to the point where you have no more spoons to give and that’s what it means to be a Spoonie. I’m going to be 100% with you all… I HATE being a Spoonie… I feel like being chronically ill has robbed me of so much in my life. But, I am a child of God and I know that He has a reason for all of this. I know I am not supposed to question God and I might not find out His reasoning until I reach heaven, but you better believe, it’ll be one of the first questions I ask Him… I have a LOT of questions for Him. So I thought I’d inaugurate my new blog on a personal note. You’ll learn more about me and my health journey as time goes on. Thank you for going on this journey with me. What topics would you like to see here on the blog??? Please share on social media as well… I need a platform because I have a lot to say, and I know my stories, knowledge, and struggles can help so many others out there. The URL is easy: imzinchworm.blog (that’s it)