Have we met? I’m easy to remember. My favorite word is no.
I don’t know when I became that guy. I’m pretty sure I hate that guy. So how did I become him?
That’s rhetorical I suppose. I know how it happened. I have a little “Noid” on my shoulder. Remember the Noid character from the Domino’s commercial?Mine sits on my shoulder, not unlike the shoulder of everyone with a chronic illness. This particular Noid gives little to no shits about the timing of your pizza delivery, he only cares about your energy level and ability to live a normal life. His biggest role consists of listening in on your life to see what invitations and opportunities arise and as you are considering attending he leans in and whispers in your ear. “Nooooo.”
I vowed to never listen to that Noid. I was different than others with Chronic Illness. I was more optimistic, more determined, stronger than others and I would continue to thrive. It is becoming more apparent daily that it is an illusion, I’m no different than the rest. At least not anymore. Now, my Chronic illness has the ultimate and final say in what I commit to.
It’s not that I don’t want to go out and do things. In fact, sometimes when I get an invite I mentally envision myself there, doing it, rocking it even. Then I remind myself of the harsh truth that only those with a Chronic Illness will understand.
“Yes, I feel ok now but how will I feel then?” That is the big question. And, while I can only speak for myself, it leads to a lot of no’s.
The Noid looms in the shadows. He doesn’t hide, his presence is known. For the longest time I knew that I had his location narrowed down, confident that he would stay where he was, that he wasn’t coming for me.
Not anymore.
It happened real fast. I went from bouncing out of my chair after dialysis. I got up early and went to bed late. I was working out. People invariably were surprised when they learned I was sick. I was fooling everyone. Even myself. Then I started showing it. My walk went from a confident gait to a slow but determined straight line. I was slow to get up. My legs were constantly cramping. My complexion paled. I knew it was happening but I was powerless to carry on the charade. People began to ask me in earnest if I was ok.
When I said I was fine…those who knew me didn’t believe it. I still refused to open up about it because I just don’t do that. They grew frustrated with me. They don’t get it, it’s not their journey it’s mine. It’s not their story to tell, it’s mine. I will tell it again but right now I’m too tired.
Always the introspective one I have looked hard at my current mindset. It’s not that I’m unable to do things, I just don’t want to. Anything outside of my recliner is no longer my comfort zone. I know how far the fall is from upright into my chair, outside the house I can’t measure or prepare for the fall. It’s happened too many times lately; I’m out and all of a sudden I just hit a wall and sometimes that wall hurts more than it’s worth.
I’ll get back on that figurative horse someday. I always bounce back. At least I always have before. I can hope. But until that time, I am taking off the Superman shirt and replacing it with a simple black T shirt with a giant N on the chest.
For I am now the man who says NO.
The Tao of Bill 
That you have the strength to be honest, with yourself and with us, is all the proof I need that you still wear the S on your chest.
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Thanks brother. Honesty is all I have and this is my only outlet. Thanks for reading my friend
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I think you are being too hard on yourself. Based on what you have to deal with, you aren’t saying no to be a prick. You’re being practical and realistic, which kind of sucks but what else can you do? You don’t want to put yourself, or the people you might be with at the time, in a position where you commit to something and it turned out to be a scenario where your head wrote a check your body couldn’t cash. That’s one reason why I’m holding back asking about a Fenway Park rendezvous this year. I don’t want to put you in that position, because I understand that you would be far from your home base should your condition start to raise hell.
Hang in there, my friend
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Maybe I am. Maybe not. You do make sense my friend. You really nailed it with “the mind writing checks the body can’t cash.”
For all it’s worth, I do look forward to the day that we take in a game at my beloved Fenway
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Me too, but thinking this year might be too optimistic. Let me know if I’m wrong
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We’ll see. In baseball language it’s a game day decision
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I like black tee shirts too. My invisible plane and lasso are tucked safely away… for now. (Probably with your Superman shirt.) I thought I could 💯 percent beat chronic pain. Hands down, no problem, no sweat. What is that Noid thing? Never saw it… but I must have it, noiditous of some sort. I wonder if it’s catchy? The only good thing about a virus is it runs its course! But those little suckers hibernate! Here’s to waiting for hibernation!
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The horse will wait for you and the Superman shirt won’t lose its magic powers. When you’re ready. Some things can’t be rushed (a lesson I’ve had to learn the hard way).
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Thank you for the good words. I think you’re right
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It takes a lot of energy to always be the strong one. Don’t forget to plug them into the charger while you are sitting in that recliner!
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I need to remind myself of that every day
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Well….you may have answered my question: after the last comment back and forth (last week) I was going to ask you about a brunch sometime. I’ll text you…I think…hang on….via IM (I’m not on FB anymore but I use the text app)…No commitments. I’m leery of commitments too. But…we can make a tentative date and cancel out if either of us doesn’t feel up to it. Think about it.
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I’d love that
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I want you to find your yes soon.
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So do I my friend. So do I
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Wishing you well, Billy. Take care
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I’ll come out of it. I always do
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That’s the spirit. 👍👏
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I always told everyone I was fine after my radiotherapy. And I was, until the end when the tiredness kicked in with a bang.
Then Dick arrived and after my op again I told everyone I was fine, but they knew I wasn’t. I wouldn’t accept it, wanted to keep going. No radiotherapy this time, certainly no need for chemo, how lucky was that. Yep. I was doing OK. I could do things………. but not much. They didn’t let me. Hubby and my friends that is. I got angry. Frustrated at not being able to do what I wanted, and if I did, I was exhausted after the effort.
I met up with a guy down the road today who asked me if I was still playing darts. I told him I’d started again and was losing well, but getting back into the swing of things. Then he said something really odd: that he was surprised to see me chalking at a knockout the other week, saw me fold, and said I looked really ill. That was the night Hubby brought me home early and put me to bed, then stayed up most of the night checking on me and taking my BP.
This past week, the tiredness is back. New meds it seems has this as a side effect, just when I was getting on top of it. I go through the day to day motions, but with little enthusiasm, but when asked, I say I’m fine. Cancer wise, I was given the all clear in November, but I still have this niggle it’s going to come back for a third time. We’ve already discussed it, and if it does, they can take the other breast and make the sides match. But it’s hanging over me Billy. I can’t shake it.
Your circumstances are way more serious than mine, but I can understand to a degree.
Can I help in any way? Be a sounding board? Anything? Will be glad to do it.
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I wouldn’t agree that my circumstances are worse than yours. I was a cancer patient once and it sucked. We both have our challenges and I wish you the absolute best in yours.
I may have come across more dramatic than intended. I’m not crippled by my situation, I’m just not (temporarily) fighting with my usual vim and vigor
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Thank you for your kind wishes.
I think we all get these times. I’m lucky to have Hubby and some wonderful friends, but sometimes I just want to curl up and stay in bed.
I don’t feel ill, just tired, but hopefully that will pass as it did before…. I started the year off with a positive walk and vibes, and really felt good to be alive. And I am.
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