health, wellness

Confessions of a Spoonie: The Reality

So if you follow me on Instagram you may have noticed that I was posting lots of art work over like a two week span, well that’s because I was in the hospital for 2 weeks. I don’t tell anyone beyond my immediate family when I’m hospitalized and a comment from a friend recently made me wonder why I don’t tell my friends, not even my best friends. I think there is a bit of embarrassment there. It happens at least once a month and I just get tired of it all and oddly enough I’m not big on visitors, I guess because I don’t want people to see what actually hides behind the smile you see on Instagram.

This photo above is the truth, even when I’m smiling this is how my body feels. I feel tired, I’m in pain and I just want to sleep. This is the reality of being a spoonie, this is the reality of living with chronic illness, especially when it’s an invisible chronic illness because you don’t look sick.

So my last hospital admission was two week, that’s a long damn time to be in a bed in a room the size of a closet and being hooked to an IV 24/7. The highlight of my day was every 3 hours when my nurses would come in and give me my pain medication and I could have a quick chat with them. It’s almost sad that most of the nurses that treated me this admission knew me so we were able to talk to about things other than why I was in the hospital. They also knew that I’m a good patient… I’m a patient with a lot of patience. If they were busy and couldn’t get my medicine on time I never threw a fit, I guess that’s not the norm. I know how hard nurses work, I’m not going to get all pissy on them, what’s that going to get me?

So back to the artwork, the reason there was so much was because there was nothing else to do and I had to do something to keep my mind from turning to mush. And it became conversation pieces between me and my nurses and me and my doctors. I’m currently taking a summer class but it’s super chill and pretty easy and not a whole lot of work to do.

This particular admission they found a bit of fluid on my lung but thankfully it wasn’t enough where I needed a chest tube to drain it. Ive had a chest tube before and it is hands down the MOST painful thing ever, the pain is almost paralyzing. So praise God I didn’t need one this time. But apparently, the cause of this pneumonia was an sinus infection where the drainage drained into my lung instead of my stomach. I saw my specialist this morning and he has a long term plan on treating this, except it’s going to be a super fight with my insurance, but I have a feeling he will be successful. So there you go… confessions of a spoonie.

Now that I’m out of the hospital I’ll be posting on a more regular basis.

Do you have any questions for me? I’m an open book, the whole reason for this blog is to educate! Are you a spoonie and want to have your story featured here, leave me a comment.

I believe my next entry will be about the analog journal/planner system I use to track everything,