Again, I have updated the Song of the Week page so feel free to check out the newest song that is giving me strength and making me smile.
We have a different sort of life, as Spoonies. Things are not really typical for our day to day existence, therefore we are given the opportunity to adopt a non-typical perspective on life.
With this new outlook we tend to be a bit calmer and day-to-day disturbances don’t bother us too much, as far worse thing have happened to us.
Because of this friends tend to shy away from calling us to complain about their flat tire, horrible cold, or work struggles. They assume we don’t want to hear about their problems simply because, as one friend so nicely put it “[our] lives suck worse”. While this may be true it does not mean that we can’t sympathize with them or that we don’t want to hear about it. We absolutely would love to share in the good and bad things that happen to our friends; we want to help solve your issues and chat about The Bachelor, and make fun of your coworkers! We’re still us.
Another issue that arises is that our friends don’t really know how to talk to us sometimes. Our lives are so drastically different than those of our healthy counterparts. Especially if these illnesses happened in our 20’s; we lived our lives as a healthy person before and this type of change is confusing for others (and for us, too). We have changed. Our lives have changed. And they don’t know where they fit in in our new lives. And it’s hard for them to feel like they’re rubbing their healthy, happy lives in our tired, sick faces. I get that.
With this in mind, some days the seduction of seclusion is so strong that it overpowers me. I want nothing more than to curl up in bed and isolate myself for days on end. Knowing that the rest of the healthy world is out there, enjoying their lives, going to work and running marathons is depressing. Looking out the window on sunny days while I can’t get myself out of bed is depressing. Moving to an apartment and out of this house because I can’t walk up stairs is depressing. Seeing Snapchats of my beautiful friends enjoying their lives is depressing. And it’s nobody’s fault. But it gets to me. I will definitely admit that. And when it does, I am best friends with seclusion. A self imposed seclusion because I feel like no one understands what it’s like and I want to wallow in this.
But I thank YOU. Everyone who is reading this and wanting to connect. YOU are what brings me out of my seclusion.
Whenever seclusion tries to bring you down, think of me and crawl back out. Or send me an email and let me know how you’re feeling and I’ll crawl down there and be secluded with you 🙂 We’re all just walking each other home.