Getting Through The Unplanned

I wrote a few articles last year about how my mental health was affected by several long hospitalizations and how it lead to the crumbling of my mental health.

I know what to expect

And here I am, exactly a year later, grasping at straws again. But this time, it’s been a little easier, because I’ve known what to expect.

I ended up having to get another PICC line for access because my veins have been so damaged the past few years that at the moment, they can’t be used. That and an added bonus if having veins/blood supply that rolls and/or collapsed the minute something enters my skin.

Having foreign medical devices attached to your body can do some mental harm if you aren’t equipped to deal with something like this. Last year, I was mentally not in a good place.

So what’s changed now?

I don't have a choice when my health is bad and I need to accept that

I know I don’t have a choice when my health deteriorates this quickly. And as much as I’d prefer to be stubborn, I know that it’s the only way I can get through these next few weeks until we find the primary source of the issue.

While it may most likely not be the course of action for most patients, especially those who have great access to veins, I recognize that this is really the only alternative to keep meds in me. I’m at my last straw and I finally gave in after multiple requests and many pokes, digs, and prods.

I only got my PICC last month, but when I look down at my forearms and see all the bruises from the collapsed veins they tried, I’m reminded I did what needed to be done. (Hopefully, it’s short, but can get the job done).

I do not do well with change and unplanned moments

My body has really been compromised after the last year’s hospital visits, lines and C Diff infections. Obviously, all of these things were unplanned, but I made it through - even though I do terrible with change and being out of my introvert environment I have complete control over.

What’s made it easier?

Obviously time; acceptance is hard, but 15 years living with something like IBD, you know you have to be adaptable to any situation. Support was a huge part of recovery for me. I had many people that helped out when I got home. For this, I am extremely grateful.

Preparing for anything with IBD

I also fully knew that recovering from infections like C Diff and no immune system would really throw my recovery time off. So I was proactive as I could be. When I had to go out in public, I had a change of clothes on me at all times, a cleanup kit for personal hygiene in case of emergencies and to freshen up and last but not least, disinfectant. Bring it everywhere, use it liberally. And yes, I’ve been known to pull out a tub of Clorox in the strangest of places. I need my environment to be pristine and clean, as to not compromise myself even more and put myself at risk of an infection in my PICC line.

I think smarter, not harder. When I am in a really bad spot and I know that it could quickly go badly, I usually have a packed hospital bag and changes of clothes in quite a few locations - car, extra backpack in the trunk, significant others house, etc. It’s what keeps ME comfortable. Sometimes you have to be selfish - if you know something helps and put you at ease a bit, throw that in your routine and don’t think about how others react to it, no matter how wild.

*Does this advocate's experience resonate with you at all? We would love to hear your experiences, thoughts, and stories in the comment section below!*