“I watch the stars from my window sill
The whole world is moving and I’m standing still”
As I have said in other blog entries, the isolation that stems from chronic illness can be almost as crippling as the actual illness itself. It can be absolutely devastating to feel really alone when you have already lost so much to being sick and in pain. You truly learn who you’re true blue friends are and who isn’t worth wasting precious energy on.
I will admit these past few months,I have felt let down by certain people.
I have spent Feb-May by myself for the most part (minus my darling husband). I lay in bed day after day after day with very little interaction except for shrieking real housewives on tv, my home nurse who comes by once a week for the IVIG, and the dogs. Weeks went by without hearing from people I thought would be some of the first to reach out. I am very lucky to have a few close friends who went the extra mile and did check in on me through texts and phone calls despite living far away. I didn’t even realize how isolated I was until I came to visit my mom and two friends came to see me several days in a row. It was like “oh yeah this is what it’s like to leave the house and feel like I am a part of the world”.
“The night is here and the day is gone
And the world spins madly on”
After that week I realized to have more social interaction, I had to stop waiting for people to come to me. I also had to stop wasting energy on why so and so doesn’t even call and just focus on the people who consistently contact me every day to check in on me, make me laugh with gratuitous llama gifs, and pull me out of my head by telling me what’s going on in their lives.
Those are the people that matter.
For the past 4 weeks I have gotten to see several of my really good friends. Some have come because I have asked and some just came on their own. People have come and lay in bed with me, people have picked me and my trusty chair up to go out, people have sat outside on my front porch with me because I did’t feel well enough to do anything else.
In short, people have “shown up” for me.
It has made me so happy the pain that is constantly going on inside me somehow feels slightly less soul sucking. Some days I still have to cancel on people because of how badly I feel which is always disappointing but it helps me really appreciate the days that I can be with the ones I love. Small things can have a ripple effect.
“You know there will be days
When you’re so tired
That you can’t take another step
The night will have no stars
And you’ll think you’ve gone as far
As you will ever get
You and me walk on, walk on, walk on”
A few of my adventures:
Cville porch life 1.0: A few weeks ago a bluegrass band was playing out by Mom’s house one Sunday and my dear friend Dana and her adorable dog Rivers sat outside with me. We listened to the band and swung and ate pizza on a beautiful May evening.
Dreaming of donuts: One day my best friend Amber came and swept me away for sushi, a walk on the downtown mall….and maple bacon donuts. It was pretty amazing.
Creature Feature: Last weekend my good friend Caroline who nows in the sunny state of Cali came out to visit her parents (and me!) We decided it would be best to watch Orange is the New Black wearing creature onesies (I got a Totoro onesie and she bought a giraffe onesie) while eating Chipotle. I will admit to falling asleep watching ONTB (thanks crazy fatigue ) but was able to wake up and go out to eat with Caroline and Dana.
Cville Porchlife 2.0: This weekend my other best friend Katie, my cousin Alicia, and Dana came over to Mom’s for a “girl’s weekend”. We sat outside listening to the wind chimes and a HUGE thunderstorm while we talked about online dating, and had a lot of laughs.
Sunday Funday: Amber and I both love the band The Weepies and bought tickets to see them on their new tour several months ago. Katie’s visit coincided with the weekend of the show so she came along for the fun. We ate at Sunflower, one of Amber and I’s favorite restaurants. It’s a fantastic little vegetarian restaurant where I ALWAYS get the same thing: General Tso’s Faux- Chicken. After dinner I was really tired so we grabbed some coffee and then we headed to the State Theater.
The Weepies sounded amazing and I cried a little during a few songs. There was something about listening to music that has gotten me through some hard times compounded with being with the two women I rely upon the most. They have both been constants in my life for a long time. Despite how at times my pain really got awful, I was able to have a nice time even if being in my wheelchair meant that I couldn’t take very good pictures of the band and had to get someone to continually unlock the handicapped bathroom. I haven’t seen any kind of live music in 3 years so it was worth a few little annoyances.
It’s amazing to me that just in one month how my mood has changed with a little more social contact. Nothing has gotten “better” in my body but I am able to deal with my physical ups and downs with much more grace since my loneliness has decreased. As the summer keeps going, I hope to have many more adventures with those I love. I will pass on the love and support I have received to someone else in need.
Thank you thank you thank you to everyone who has been there for me in some shape or form. I love you endlessly.
“I was made for sunny days
I made do with grey, but I didn’t stay
I was made for sunny days”