‘Twas the night before Christmas and despite the sleeping spouse, there was still one stirring in the Chiarian’s house. The stockings were hung by the chimney with care as she hoped despite the pain, she’d be able to be there. The family was nestled all snug in their beds, while fear of disappointment danced through her head.
While everyone’s talking about holiday cheer and how there’s laughter in the air, for the chronic pain patient it’s not that easy to get into the holiday spirit. We remember the happier holidays of the past and all that people want to see in us, but there are so many thoughts acting as obstacles in our path.
Will I have the spoons (energy) that I need to make it through the day?
We speak of energy in terms of spoons (The Spoon Theory, by Christine Miserandino). We know what it was like to have normal levels of energy to accomplish tasks and how much more energy every task requires now that our bodies went crazy. You don’t appreciate the energy it takes to get ready for something until you need a nap after every shower you take.
What will I do if I experience a pain flare and how will everyone else respond to me if I do?
Almost worse than the pain itself is living in fear of the pain, especially when we know how it seems to ruin everything for everyone, not just us. For the patient and their family, they know far too well how pain can ruin even the most important of occasions. And for the patient, we know the look on the faces of those we love when we have to cancel or depart early. It’s one thing to see those faces a time or two in a lifetime, but it’s a lot harder when it happens time and time again, and there’s nothing you can do about it.
Will I be able to engage?
People rarely realize how much time we really spend alone (or at least alone in our thoughts). We think about so many things. Should I tell them about what I’m facing? Should I answer how I’m really feeling, or just say, “I’m fine”? Am I talking too much about my conditions? Is it just me and my brain, or is it them? Are my feelings about this even rational? Am I losing my mind? Most of these thoughts are actually healthy thoughts, but when we second guess engaging with the world and live in constant fear of offending, it becomes detrimental to the way we see our value on this earth.
How many days of pain will I experience after the holiday is over?
We’ve learned from those times that we’ve tried to “push through the pain,” that this will be a factor nearly 100% of the time. While the healthier us could push through the pain, that often backfires when it comes to chronic pain. After a few hours of festivities (no matter how light the festivities seem to be), our nervous systems usually respond to the stress with inflammation and pain (which can last several days or even weeks).
Will I live up to what’s expected of me or am I going to let down everyone I love, yet again?
Even when nobody around us expects much from us, there’s always a part of us that still longs to be like our former selves – to have the strength and energy that we once had. The truth is, despite everything we’ve been through, we want to be more for those that we love. Our lives were forever altered and reconciling that with a lifetime of dreams isn’t easy. We’re not feeling sorry for ourselves, we’re mourning and trying to adapt to the reality of all that we face. It hasn’t been easy on our families either, they’re in mourning too. Chiari/comorbids have stolen hopes and dreams from all of us, but we don’t have to let it dominate us. We can figure it all out together and be a stronger family for it!
Today is 11th April, 2019. Spring is in the air, yet I struggle to appreciate its presence. My daughters are at school, my son is at home in bed yet again. Like so many other days he is unable to get up. My son is 19 years old and looks just like any other 19 year old. You would never guess that this 19 year old is fighting a tremendously unfair battle every single day and has done so for several years.
I started carrying out my own research, which clarified the distinct link between brain disorders and compromised immune/digestive systems. Whereas his doctors are reluctant to make that link, the evidence is clear. 18 months after surgery, my son got struck down by glandular fever. Again, we were hopeful that this would only be a temporary setback. Today however, my son suffers from 
My son is my hero. My son is a fighter. My son has generally done what health professionals told him to do, taken every medication health professionals told him to take, followed the advice health professionals told him to take, yet the system continues to let him down. When I look into my son’s eyes, I still see this steadfast determination but I now also see pain and disillusionment. My son believed me when I told him we would overcome this together. My son believed me when I told him the worst would be over soon. My son doesn’t believe me anymore. I feel that I have failed him.
Like any marriage, we’ve had our rocky moments. We’ve both showed our ugly sides more than we like to admit. I’m not sure when he changed, but somehow along the way in our 27 years of marriage, my husband morphed into this amazing man who is EXACTLY what I need in every way!
relieving all of my symptoms, but never in a million years did we think that decompression would open Pandora’s Box on my need for surgeries. From 2012-2015 I needed seven additional surgeries. Each surgery had its own recovery and complications. And with each additional surgery, I became increasingly dependent on my husband for help, but not once did he complain. This was affecting his life too, but not once did he concentrate on that. Not once did he think of it as being unfair to him to have to care for me, even though it really was. I’m now covered with scars on my left side from my neck to my groin, one night he raised my pajama shirt and gazed intensely upon them. He started kissing them. When he got to the scars covering my stomach, I pushed him away and with tears in my eyes, I told him that I wasn’t comfortable with him touching me there. He looked me in the eyes and told me that he didn’t see me the way that I see myself. He said that when he sees my scars, he’s reminded of all that I’ve had to fight through and what a strong woman he’s married to. “I wish that you could see yourself the way that I see you,” he exclaimed. All my insecurities just melted with his words of affirmation.
I’m in an abusive relationship. It’s not a romantic one at least, not in the traditional sense of the word.
Once I isolated myself from the people that I once would have laid my life down for, she turned it on me. There was no more self-love. Instead she instilled self-doubt. I wasn’t good enough to have friends and family, and love and happiness. I deserved her miserable and toxic company. All this emptiness was my fault and now I must live with it and her forever.
I started to hate her. I hated her for making me hate myself. And every time I would get close to telling her to stay away from me forever, I would get flashbacks of that goddess. The girl who laughed in the face of fear. The girl who made me feel the best I’ve ever felt. I know she’s still there. I can’t give up on her.