You Guys Make My World Less Small

You people in the real world have TGIF. I used to, but now I often forget what day of the week it is. I've also, occasionally, forgotten the month. But I digress. I thought my version of TGIF could be a really uplifting, positive post.
It isn't written by me though. It's written by you.
Sometimes when people reach out to me about this blog, they apologize, more or less, for getting in my business. But please, get in my business. My world is small and everytime someone reaches out, it gets a little bigger.
The messages here are by no means all-inclusive of every FB message, text, or email that I've gotten, and clearly I can't include phone calls (like the 20 minute call from Hawaii yesterday!). Oh, and for once, none of this is about Kevin's awesomeness (even though we can all agree he has been the rockstar of caregivers). It's really all yours. YOU ARE AWESOME TO ME AND FOR ME TOO!!!!
Friends, I want you to know that these messages are a huge part of the reason I have this blog. As I said, my world is very small and isolated lately. Thank god for technology, because I can reach out and connect, and through this my world has become slightly bigger. Every time you tell me I inspire you, I feel more strength to keep fighting. Every time you share a problem that feels similar to mine, I feel less alone. Every time you send me these kind, loving words, you lift me up and you keep me going. You cannot possibly imagine how much every one of these means to me.
And that's a bonus reason I'm doing this post. Because the next time I get really down, I have an easy place to go to find so many blessings and so much love all with a single mouse-click. Re-reading these I wonder, what did I do to deserve you guys?
**Disclaimer: I removed things that gave away identities from the messages, because what you've said to me is personal, and it's not my place to put it out there. I'm just trying to share the wonderful love and kindness you've all bestowed upon me. If I slipped and you feel people reading will guarantee know it's you, message me and I'll go in and edit the post if need be.
So once again, thank you all. Love-love-love, Me.

PS--those of you that say I'm inspiring you through whatever your tough times are, talk to me... I'm home alone all day, so I'm available for those in need of a chat. Seriously. People always think "oh I can't share my problems with a chronically ill person, because my stuff will seem so trivial" but that is NOT true. Being able to talk to someone about "normal" problems, like family issues or dating stuff, make me feel more normal and connected. I will never feel your problems are trivial, everyone's pain and struggle, no matter how big or small, is real and valid. And being there for others lets me feel productive, like I'm contributing to the world. So lean on me. I promise, it will HELP me.

Okay, and on to what you loves have sent me......


"Hey Shanley!

I just read through all of your blog posts (yes, like a creepy stalker) and there are a few things I want to tell you. First off, I want to say I am sorry the surgery did not help as expected. That really sucks, and you are absolutely inspiring for keeping your chin up through all of your struggles. In tandem with that, it's good to know that you're allowing room to be vulnerable- I am a firm believer that allowing yourself to feel vulnerable, sad, and scared really makes you better able to cope with what you are going through. It can be overwhelming at times- feeling like you are literally suffocating in emotions, but taking it one day, one minute, or one second at a time and breathing through it, accepting those feelings- That is testament to your incredible strength. 

I am also really happy that you found a blog as a "mental dump" outlet. I know that when life gets overwhelming it is unbelievably important to get it all out- it is therapeutic and relieves some of the stress. I would like to thank you for sharing your struggles, and triumphs with me (and the internet). It's important that people know and hear about invisible diseases, and I think it's wonderful that you are sharing your personal experiences.

I have struggled with _____, another invisible disease but it is much more well known. I've been thinking about starting a blog detailing some experiences I have had with the hopes of helping others. Reading your blog has been absolutely inspiring, and I'd hope to inspire others as well.

I'm not sure if all of this rambling is actually doing anything, but I was compelled to email you about my feelings on what you've written. So I guess what I want to say is that you are a strong, compassionate, woman who has been dealt a really tough hand, but you have the fire in your heart that gives you the determination to succeed and overcome these shitty obstacles. I can't even begin to tell you how inspiring, and encouraging that is- especially to people like me, who suffer from invisible diseases.

I see on Facebook that you moved - but I googled it and you're only an hour away from me. Please PLEASE know that if you ever need anything, a plush shark, a box of chocolates, some cheer-you-up flowers, a shoulder to cry on, a person to cry with, a helpful ear to air complaints, pains, thoughts to- I'm your girl. If you ever need anything, anything at all, I'm a text or call away.

Love you, keep your beautiful chin up!"

"I am so sorry to hear about all that you are going through... _____ showed me your scar on Instagram and my heart goes out to you, I can't even begin to know all that you are going through but I know that you have made a difference in my daughter's life, not knocking _____, but _____ is constantly saying well it's different because in soccer we were a family,  I hear her repeat that theme over and over again, I hear such admiration in her when she talks about you, not just as a coach but as a person. I am so lucky that she had you for a coach but even more lucky as someone that she looks up to not just for winning  but also a strong, confidant young woman/ I hope you can get the relief that you seek from this pain. Take Good Care of Yourself and Heal...."

"So I started following your blog recently after seeing one of your fb posts... and from what I can tell, life kind of sucks right now, huh? Although your gratitude made me smile. I'm sorry your surgery turned out the way it did, more so I'm kinda pissed. Do I have any right to be pissed for you? Idk, but I am - it just seems like shit. If you get the chance to reply to this, do let me know what actually happened? 

I'm also totally here if you just want to rant and bitch about anything and everything, cuz I think you have every right to at this moment. I also wanted to say that I think Kevin is amazing. I'm in awe of him and you too 😊

I really hope to hear back from you, I've been missing our chats!"

"Hey Shan, I am so enjoying your blog...writing is so therapeutic...but of course my heart aches for you....i wish we lived closer...so sad that you are so ill & lonely...if you would feel comfortable would you please send me your address...would love to drop you a card ...or something homemade & sweet??? Do you have any food restrictions??

Thinking bout you lots...and sending hugs"

"I was thinking of coming over  around 12:30. Is that alright? Do you need anything? Would you like me to pick up something for lunch?"

"Shanley i knew u were sick but had no idea to what extent. I've been reading ur blog and the tears just started flowing. Besides being unnaturally beautiful on the outside lol, ur soul, ur heart shines. Ur an amazing woman and I have an ever deeper admiration of u. I felt a connection with u when I met u for some reason. Shockingly cause I don't like ppl a lot lol. I resonated with ur tough girl attitude. I understand that completely. I just met a guy and I actually like him so naturally I wanna take off running!  I'm trying to be cool about it on the outside and not show him complete crazy.  Idk how to do this dating thing. Ur words have given me some hope for myself, eventually lol. I just want to know what can I do for u?  I wish I drove and could just sit on the couch and nap, talk, whatever with u sometimes. I'm at a loss for words. I can't believe u can't get disability. I just want u to know that I will be here if u need someone to talk to or lean on. I know u have a lot of friends and family an ur husband is AMAZING. But one more won't hurt. Ur a hero in my eyes. I wish u nothing but happiness and less pain. More light and love.  Namaste"

"Keep blogging, it's very powerful and I know you didn't ask for my opinion, but I can't wait to see you to deeper with it.... I know it's been a long journey, but I really hope you start feeling better soon."

"Hi Shanley,

I just read some of your blog and wanted you to know that you are on my mind. I am thinking of you and praying for you. I can't imagine or fully understand what you are going through and I don't always know the best way to put feelings into words, but I am a big fan of quotes, proverbs, and poems. I am hoping that some of these quotes I found can offer you words of encouragement.....

"Let someone love you just the way you are - as flawed as you might be, as unattractive as you sometimes feel, and as unaccomplished as you think you are. To believe that you must hide all the parts of you that are broken, out of fear that someone else is incapable of loving what is less than perfect, is to believe that sunlight is incapable of entering a broken window and illuminating the dark room." ~thethingswesay.com

"An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it's going to launch you into something great. So just focus, and keep aiming." ~unknown

"I'd be unstoppable if not for law enforcement & physics." ~unknown

"Giving up on your goal because of one setback is like slashing your other three tires because you got a flat." ~christinekane.com

"10 years ago we had Steve Jobs, Bob Hope and Johnny Cash. Now we have no Jobs, no Hope, and no Cash." ~unknown (pinterest)

"Tears are prayers too. They travel to God when we can't speak." ~ Psalm 56:8

"The strongest people are not those who show strength in front of us but those who win battles we know nothing about." ~unknown (pinterest)

"I can't promise to fix all your problems but I can promise you won't have to face them all alone." ~unknown (pinterest)

"Never apologize for what you feel. It's like saying sorry for being REAL." ~ILIKETOQUOTE.COM

I hope you smiled at some point. Keep your chin a up and keep writing."

"I just read your blog post. It reminds me so much of my grandparents. They had the strongest love I've ever known and I feel honored to have even been able to be in its presence. I know we haven't kept in touch over the years, but that number right above this message sent December 2007, still works. And I'd encourage you to use it if you ever need an ear to listen or mouth to distract you and perhaps offer advice on something I can't begin to understand, but feel for nonetheless. Keep your chin up, Shanley. We're all rooting for you."

"Hey shan! I got to tell ya- I enjoy reading your blogs- I'm learning about your sickness and I continue to keep you in my prayers! Loved your beachy pics with your hubby- beach pictures are always my favorite! (No make up needed!) I wish you didn't live in _____ bc I sure would love to catch up! Hang in there girl, it doesn't sound easy but with love of your family and hubs I have total confidence your tomboy self will be back! Xxoo"

"And oh em gee shanley we all hope you get bettrr.  This terrible you dont deserve this your are the best person I have ever met ! I know you will have somyhing good coming around the corner soon you deserve It ! :( please get better !!!!!!!!!!!! ♥

......I dont know where I would be with out you . You have really been a big helping hand."

"I miss you so much. I love you.

I actually just started crying when I typed those texts. I'm sad for what you've lost, I'm sad I don't see you anymore, that you can't really talk to me, we still love each other the same but our friendship is different now and I miss you a whole lot. <3

I am glad you started the blog but it does make me incredibly sad when I read it, so I don't do it often. I feel like, I'm a nurse and I should be able to help you. I have all the education, but it is so useless in helping someone I love so much. I don't want to make your struggles about me, I hope I am not coming off that way..."

"Hey Shan I know you've been feeling down lately with all the medical stuff , I just wanted to tell you to stay strong. You are always there for me and everyone on the team, You are a gorgeous person Inside and out, and you can make it through anything. Get well soon Shan, love and miss you."

"Love your modeling pics on IG and super love your tri hair (of course). I'm back in the hospital. Sigh. Hope you're feeling a little better. Glad to see you blogging."

"That happened to my aunt when she had knew surgery. She was 23 at the time. In her 40s now. And has multiple surgeries which never helped. Sorry that's not encouraging news.. I really do wish the best.... That sounds terrible. I thought I had problems too young with a bad back."

"sorry to see the recent events with your body and health 😔 praying things get better babe."

"I wish there was something I could do for you 😩Your such a good woman... I love you and I wish I could be there for you. I will be back In town June 12-16 - If you need someone to wash & dry your hair..😪😁"

"Heard everything got worse!:( I really hope everything gets better and im sure it will!! I love you lots and Im here if you need anything shan"

How'd Florida Go?

As you may have read in my last post, traveling isn't great for me. The pressurized cabin, the bumps, so many things mess with my pain level. Kevin made it as tolerable as possible, but it was still a very bad situation for me. To simplify how bad it was, Kevin suggested for our honeymoon we only consider places we can fly direct to, because he doesn't want to see me go through that again. (I said no, if my honeymoon isn't worth sucking it up for, whatever would be? And I'm not willing to concede defeat like that.)

After landing, things didn't get a whole lot better for me. The taxi ride was bump after bump the entire way out. By the time we checked in at the hotel, it was time to get ready for the wedding. No rest for me, and god knows I need my naps to survive. So I made do with some energy drinks (I usually stick to just coffee), and I managed to not just survive, but also actually enjoy the night. The wedding was on the beach, and the reception was in a ballroom overlooking the beach, so while at dinner we got to see the sunset of the Gulf. Perfection.

I faded early inthe night but managed to hang on until the end, and even get some dancing in despite my body. Kevin was an angel, offering to leave early with every sign of my pain or fatigue, but I felt I had to hold out for the whole event. I mean, the "Chadresa" wedding is why we were in Florida to begin with. How could I leave early? Of course, as soon as I got to our hotel-home I crashed very hard.

We slept in all day Sunday, which was needed for my recovery. This isn't just the TOS, but also the CFIDS coming in to play. After several cups of coffee, we hit the beach early in the afternoon and relaxed. We sunned both sides equally, with me slathered in SPF 50. (Sunburns mean more pain, more dehydration, and more health problems in general. I'll stay pale if need be.) Then we went to play in the water. Floating and flirting in the Gulf felt so freeing. I forgot that what I was doing could be considered exercise.***

When we left the beach we decided ordering carryout would suit my body much better than going out. We got delicious calzones from a local Italian pizza place. Kevin set the table while I sat slumped over in my chair, and he asked if I was just tired or if it was something else. I said it wasn't tired, it was beyond exhaustion...meaning CFIDS related. 

Five bites into my 3-cheese piece of heaven I had to give up. I asked if he minded if I excused myself and apologized for not finishing dinner with him. I went to go lay on the couch and asked him to come sit with me when he was finished eating. Apparently I passed out quickly, only stirring for him to settle in with me moving my head to his lap, then I stayed out for 2 hours. I awoke disoriented and still exhausted. I ate a little more, knowing my body needed more nourishment ("food is fuel!"), and we went to bed soon after.

Monday morning meant checking out and another long, bumpy trip to the airport. I had nothing to do but sleep through much of the ride -- when my body is in pain, that is one of the best things I can do for it. We arrived with plenty of time, and that means good things for me. It means less stress, less fuss, and time for coffee. Fortunately our return flight was a direct flight, so we had it quite a bit easier upon the return home.

Fast forward to Monday night, and it's like Sunday night on repeat. I was dead to the world. We were watching some TV and I felt my eyes getting heavy, thought I'd rest a little, but then 1.5 hours passed and I woke up so groggy and disoriented. Kevin explained to me how long I'd been in & out, and that I'd oddly requested "my food" and said some other things. I apologized for not making him the Sloppy Joe dinner I'd promised.

Tuesday was still much of recovery mode. I slept in extremely late and felt it in my muscles and bones and entire being all day. I explained to K, and I'll now explain to you, that's just the way CFIDS works. It's not tit-for-tat. One day of exhaustion does NOT mean one day of recovery. I wish it did, but that's just a dream world. It's not reality. So we will see how the next few days go. Kevin's birthday is tomorrow, so tonight we are celebrating with his family and tomorrow we are celebrating with just us. I'll spend my days resting while he is at work, so I have a good reserve for the evening activities. And I'll keep you posted.


***Happy story: While we were packing up our beach bag, I noticed Kevin playing with his wedding band, and realized he had a noticeable tan line. If you know me, you know I'm the girl who has a song lyric for every situation and immediately the beginning verse of Ed Sheeran's "Wake Me Up" started playing in my head.
I should ink my skin with your name/ And take my passport out again/ And just replace it/ See I could do without a tan/ On my left hand/ Where my fourth finger meets my knuckle
ENJOY!

Posters, Making Every Moment Count, and Caged Lions

I stare at this word-photo everyday. It hangs on the wall next to the right arm of the couch. To anyone who might come in our home, it's in a very tucked away corner. For me it's direct line of vision, 12 o'clock.


"Life.
Find a passion and pursue it.
Fall in love. Dream big.
Drink wine, eat great food and spend quality time with good friends. Laugh everyday.
Believe in magic. Tell stories.
Reminisce about the good old days but look with optimism to the future. Travel often.
Learn more. Be creative.
Spend time with people you admire.
Seize opportunities when they reveal themselves.
Love with all your heart.
Never give up. Do what you love.
Be true to who you are.
Make time to enjoy the simple things in life.
Spend time with family. Forgive even when it's hard.
Smile often. Be grateful.
Be the change you wish to see in the world.
Follow your dreams.
Try new things. Work hard.
Don't count the minutes, count the laughs.
Embrace change. Trust in yourself.
Be thankful. Be nice to everyone.
Be happy. Live for today.
And above all...
Make every moment count."

When I bought it, I thought, Sure some of these aphorisms seem trite, but I love it. It really is the way to live. I only thought about taking a sharpie through "drink wine," but everything else was dead on.

As you can see in the picture, some of the font is bigger than others, or bolder. But still I know this sign so well, that's not necessarily where my mind goes. If I'm doing well I see so much beauty, positivity, and great advice. I think, Hey, I can do that. I can be nice to everyone and be thankful and be creative. I can smile, laugh, reminisce, love, dream, trust, etc...

But this morning.... This morning I was not doing well. All I could think was I spend EVERY SINGLE DAY on this couch staring at this effing poster that says "AND ABOVE ALL MAKE EVERY MOMENT COUNT." Are you SERIOUS? Why in the Hell did I hang that poster there?

And then there were tears. And there was internal beating myself up. You're pathetic, I told myself verbally and internally. You don't make moments count. You're trapped in a body that can't do the things that define you and you're cursed with knowing exactly that; you're cursed with a disease that steals your body, but not your brain.

I AM NOT PATHETIC. I know that will be today's positive affirmation. But I also know it's true that I am stuck in a body that betrays me, while my mind stays sharp. Living with CFIDS for so long, that has always been my greatest fear. That one day I would be crippled by it, in such a way I spent all my days in bed, watching life and the world go by me. Oddly enough, it's more the TOS that has caused this. I never saw that coming.

CFIDS, in total, has caused me to spend nearly 3 years combined total disabled, stuck in bed. So I am familiar with this type of torture. And I've always told people, whether they believe it or not, that's a fate worse than death.

A few hours ago I was a leaky sobby mess, but I already have my fight back. I don't know how, but I'm going to find a way to get out of this trap. It's like wild animals that are captured and caged. In the movie XXX, staring Vin Disel and Samuel Jackson, Jackson's character says,
"You ever watch lions at the zoo? You can always tell which ones were captured in the wild by the look in their eyes. The wild cat. She remembers running across the plain, the thrill of the hunt. Four hundred pounds of killing fury, locked in a box. But after a while, their eyes start to glaze over, and you can tell their soul has died. The same thing happens to a man."
Jackson's character is referring to prison, but it's the SAME for people like me.

Love & The Little Things That Make My Days Bright

I meant to post this on Mother's Day, but ya know.... us sick kids aren't always timely with our plans. Plus the meds make us forget stuff. For those of you that don't know me very well, this girl is someone who I have mentored for the last two years and consider her my half-daughter. She often calls me Mommy, and during season I coaches her, she leaves me little love letters in my coaching book. I haven't been able to see her recently, but she'll always be my girl.

The happy Mother's Day text came in on Sunday night. My reply was in the morning. And calling me "Stanley" wasn't a typo, it's one of her weirdly affectionate things.