Welcome to the bumpiest road

I’m not one of the lifers. My chronic conditions took over less than a decade ago. While I had experienced some symptoms earlier, my overwhelming and life-altering issues only developed in my late twenties. Of course, any amount of time with severe pain and symptoms feels like an eternity. Looking back to days of physical freedom, it seems like another world. As though, I was another person.

Maybe that change actually happened. When your body and life shifts so abruptly, are you still the same person you were before? I don’t know. I don’t feel the same. The new me is more empathetic, understanding, cautious, supportive, and protective of other people. I trust what they tell me and I realize that their reality is as real as my own. 

Thinking of my fellow sufferers, I’m brought back to when I first realized that this condition is my new normal. I was scared and mad. I fought against accepting it with every ounce of energy that I could muster. I still fight it. I still get mad and endlessly pursue cures. Only now, that fight and anger has a cushion. I can lie down between bouts of frustration and be okay. Navigating my health issues has become second nature. I automatically make decisions based off protecting and being proactive about my health. 

Some people will handle their entry into chronic pain and symptoms with a strength I never had. They will start the fight with bang and never let up. They won’t allow themselves to accept this as being normal. They are who they always were. Every moment of their lives will be spent clawing for fixes and cures. Others will be like me. 

They will yell and cry. Mourning their old life and not wanting a new one, they will scour every resource for reasons ‘why’ and ‘how’. Reasons are as important as solutions. Learning about their bodies and pushing boundaries, as they walk the ever-growing line between an old and new normal. Never satisfied with today, but okay with settling into what their health needs to survive and thrive. These people finally accept that, no matter the fix, they will never exist as their former selves.

Covid-19 has brought an unfortunate number of people into our world… onto our road. They call themselves “long-haulers”. It’s a fitting term. Chronic suffering is a long haul. It’s often a life-long haul. Sometimes your body bends so much that it breaks. It can’t take the onslaught of inflammation, viral load, new germs, etc. It waves the white flag as the organs go up in flames and the army of white blood cells gets slaughtered. Your brain gets tired. So incredibly tired. Tired of trying to keep up with the battle. Eventually, it all falls apart. 

I’ve been lucky. My body’s internal voice is loud. Screaming in a canyon loud. Learning to listen is a skill that I’m getting better at as the days go by. Sometimes, I don’t listen and my body takes control. You aren’t going to rest?!- Yes you are! – and I’m unable to get up. You aren’t going to sit down?!- Yes you are!- and I faint. You aren’t going to close your eyes?!- Yes you are!- and a migraine takes me over. In these cases (in my case) learning what your body needs and following through on that is the key to navigating a chronic condition. 

That’s my advice for the newbies, the long “long-haulers”. I’m not going to say that it’s going to be okay, because it isn’t. Your new normal is going to suck. In the beginning, it’s going to be the worst version of reality that you can imagine. You are going to think that it’s not worth living. That it will never get better. It might not get better, but it will change. Your tolerance for pain will go up. You will find tricks for moving through the world with compromised lungs or a weak heart. You will lose keychain friends and your bonds with anchor friends will grow. You will end up supporting others and finding levels of strength you never knew that you possessed. 

Welcome. It’s a bumpy road, but we are all riding it together. 

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