Inspiring Spoonie Life

Inspiring Spoonie Life



Hello, Spoonie's! I am sorry for waiting so long to post ...it definitely wasn't intentional. I have been working so hard on my novel that I sort of got lost in it, so this week I pulled back a little and made a list of the things that I intend to accomplish. I made sure to mix it up so that some of them are within arms reach, while others are more challenging, and are soaring amongst the clouds. This way, I am guaranteed some level of instant gratification to be excited about while I continue my journey to work hard and remain focused ...I will find myself reaching into the clouds to proudly claim victory!

What I have found to be incredible difficult is keeping to a schedule. Living with a chronic illness, for me, is really the same thing as saying, "syringomyelia calls the shots, what does it have planned for me today?" I would love to start my day with a shower and a cup of coffee. Instead, it's coffee, my medication and a waiting period for the meds to do what they do before the sting of shower water can be tolerated. Then, I want to spend my day writing. I have several different projects that call for my attention and they are all important, so I choose one, and work for as long as my neck will allow me to sit up. I would love to be able to get in my Jeep and drive to where ever I WANT to go, but driving is usually out of the question, and it is usually a dr. appointment that gets me out of the house. I want to get out and have fun! However, my definition of fun has had to change along with everything else, after four years of changes and adapting, I have reached (mostly) acceptance. I stay busy and often run out of daytime before I am ready or become too tired to continue before I am ready to stop, so it makes me feel as if I have accomplished something in finding a purpose for myself in spite of the obstacles.

I hope that, for the most part, you have found something to fill in the voids that having an illness creates. I have met some incredible people online and am proud to call them my friends, they span the world, and while not everyone fights the same battle ...we all seem to be fighting for something and just really need someone to say "I understand. It's ok to feel that way. You are worthy. Let the scars remind you of where you have been, the path traveled, and that it is now time to take the path less traveled. Being you is the very best thing you can be!" It feels as if people aren't heard anymore. My ultimate goal is to listen, really listen, and not be afraid to reach out.  

Depending on what your goals are, no matter how big or small, you can find someone or something that gives you that push you need to take the first step, it can be often be the hardest and the most rewarding. I know that when others look at me they feel pity and helpless due to my condition. Nonetheless, I do what I can to change their minds. I have days that render me fairly helpless, but I always try to do something, even if it's from my bed. It's good for the spirit!

Find something that makes you smile and make sure to set it out so that you can see it when you wake up, it's important to remember how good it feels to smile. It's contagious! It's wonderful for the heart and soul, helping to turn your tears into rainbows...

I do have a bit of news about my last MRI, it was during last months six month check with my neurosurgeon, my syrinx (fluid filled sac inside of my cervical spine)is stable. It looks like it did in the MRI from February, so that means that as of right now, I don't have to be thinking about having another surgery! Which is awesome because I am still struggling to recover from the surgery I had on September 24, 2014. This is the first time in four years that my syrinx hasn't expanded between surgeries ...like a miracle! Now I am able to totally focus on my writing projects without surgery deadlines :)

Take care of yourself and those around you! Thank you for taking the time to read my blog and I promise to post again real soon :)

I wish you plenty …of love, understanding, support, spoons, and dreams come true!

Monica Reents