oh I have had some bad nights. My bladder decided to kick into overdrive. the spasms are so very painful I couldn’t stand it. my hubby hugged me, held me part of the time, gave me extra medicine and after it got into my system it did help. I am thankful. I will be honest, if it hadn’t I probably would have said, ER it is. It was that bad.
Why am I writing about this? It is something I deal with on a regular basis. And it is not something that necessarily gets talked about in the open. I learned and realized that within NMO communities, things like swallowing and speech being effected don’t get talked about enough. So, I figure I will talk about these things. Why I have started a “Medical Monday” series on YouTube. Once a month I will post a video discussing my experiences with varying topics related to NMO and living with a severe illness in general. I started the series with this:
mid to late June I am telling my journey to diagnosis. If you are interested stay tuned. You can always subscribe to my YouTube channel and click the notifications so you will know when a video comes out.
The spasms continue. I had to close my studio Sunday of the Studio Tour. My body was exhausted and miserable. I again took extra medication and that did not help enough to allow me to stay at the studio. My doctors called in other medications and as it turns out I have an infection. Infection often cause nerve pain and spasms to be worse. It is exhausting. Hopefully soon I will be feeling better after the right antibiotics kick in.
I am still trying to recover from my recent NMO flare. My support system and myself (myself begrudgingly) know I need to rest. We brought stuff home from the studio so I can do stuff from bed.
It is frustrating, and scary for me. I do not like being in bed. I do not like feeling my body deteriorate. I do not like being sick, and being able to feel and see the effect it has not on just me but my family and my friends. It effects everything in life.
pictured is a detail from “Wading Water’s Edge”. It is both chaotic and melodic, just like water’s edges as you wade in. where ripples turn into eternity, and murky shadows hide. Coolness or warmth hugs my body the further you wade.
I imagine these things in the shower. It is where I get to wade in. I have not been in a pool, or a lake, or a body of water in years now. There are accessible places, I just have not been.
I am happy to be able to have a shower. I spent a long time with bed baths or “spit” baths. It is a gift to feel water running down your body. Feeling your hair and body really clean. I love it. It feels good. Moments of peace.
I watch the edge of the water meet my skin and roll down and off. Over and over drops fall and mini waterfalls cascade. Repetitive repeat becomes mantra for peace, a meditation of letting go and breathing. in and out. finding rest.
I hope you find the peace and rest you might need this day. I will do the same.
paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower
