My husband saw this image on Facebook earlier tonight and showed it to me, chuckling a bit, and said, “This is you.”
And, in the past year, it is me.
I was thinking about that as I went to bed and all the changes we’ve made in the past year to make my spoonie life brighter when I went to sleep. I planned to write about it tomorrow. However, it was methotrexate injection night and the MTX did not sit well this time so I’m up.
Since my last post was so heavy about the awful parts of living with chronic illness, I don’t want to leave it there.
See, this time last year, I was trying to work five shifts per week and I couldn’t. As a floor nurse, my job is really physical and my body would inevitably give out after a shift or two and I would end up in the ER. I would lose pay from missing shifts AND have the added medical expenses of the hospital and extra prescriptions. It was constant stress.
My whole life felt like it was either trying to rest up to go to work or trying to survive work (that I wasn’t able to do) or trying to recover from work.
At that point, I think I was really depressed.
Every day, I was thinking and journaling that I felt like I was fighting to stay alive just to barely survive work and then die.
That’s really sad considering I have so much.
I have an amazing life: the best husband, awesome kids, a wonderful family, great friends, many interests I’m passionate about, and many things I love to do.
And I really love being a nurse as well. I was just trapped in a situation where I could not do the work and could not enjoy the rest of my life because of it.
Fortunately, of course, I was blessed with the opportunity to work Baylor, which is hard to push through at times too, but it is two days per week so I can make it and I have my life back.
Five days a week I am home with my family. I can rest when I need to. I can plan activities. I can just be happy.
And my big happy things are books and writing and music.
Since my illness is very very expensive (as I mentioned in my previous blog), I am all about finding inexpensive ways to do the things that I and my family enjoy.
For my books, I found Thriftbooks, where many of the things I’m looking for are less than $4 and every order over $10 has free shipping. Oh, and for every cumulative $50 spent, I get a $5 discount code. It has been perfect for buying all of our family’s books and I love it so. – and, yes, I do have a tablet, but I hate tablet reading. Paper books for life, I say! 🙂
Since I have so many books, my amazing husband refinished this adorable bookshelf for my “to read” books:
As for my writing, in addition to posting here, I’ve been working on some pieces to submit to different sites. Being a writer is a lifelong dream and now it’s something I can work on making happen. It’s never too late.
For our music, as we are always listening to something in our home, I have my record collection, iPod, Pandora One (so worth the $5 a month!), and we do the family Apple Music plan. For $15 per month, we can all get pretty much any album or song by any artist we want or just listen to Apple Radio. My daughters and I love it.
And, finally, the concerts.
I adore live music. Going to shows has always been one of my favorite things. For awhile, when I first became ill and then just got more and more sick, we really weren’t able to go and do anything. Finally, as our situation changed, I am able to go and do more and I have discovered the wonders of the Groupon concert ticket.
For usually $20 per seat, you can purchase a Groupon to some amazing shows, like Bon Jovi. You don’t know where you’ll be sitting until the day of the show, and, if the best seats are important to you, this is not your option.
However, if, like me, you just want to go and hear the show and sing and dance and have a great time, it’s fantastic.
And spoonie budget friendly, which all spoonies know is crucial.
Getting back to doing the things I love has brought my spirit back to life. I feel like me again.
All of that said, especially to my spoonie sisters, whatever your thing is, get busy doing it.
Yes, we are sick, and, apart from a medical miracle, we always will be. But we are fighting for our lives and it’s a hell of a lot easier to keep fighting when we make sure it’s still our life and hasn’t just turned into the life of Patient #58720.
Life is too short. . . Buy the damn concert tickets.
writer. holistic nutritionist. disabled nurse. wife. kid & fur mom. Follower of Jesus. Spirit Junkie.