Chronic: The Pain Remains, and So Do I

Every once in a while, my mind drifts while I am doing the most ordinary things: driving, writing, working. I think about the life I might have without this constant pain. Would I be more productive? Happier? More patient, present and pleasant to those around me?

I imagine a version of myself who is not constantly negotiating with his own body. Someone who can make plans without calculating the pain or resting beforehand. Someone who wakes up thinking about the day ahead instead of how to move.

Each morning begins with a decision. Do I rush out of bed and get the first wave of pain over with, or move slowly and endure it for longer because I am exhausted? I usually choose to rush, not because it hurts less, but because I want that first difficult movement over with.

Even the stairs require a choice. Do I rush up and deal with the repercussions afterwards, or climb slowly, one painful step at a time? Moving carefully does not necessarily protect me. Sometimes, it only makes me experience each part of the pain for longer.

Most people probably never have to consider these decisions. For me, they begin before the day has properly started.

Every day, I face the physical and mental toll of forcing myself through chronic pain.

The pain is not the only thing that wears me down. I am constantly aware of what I might be capable of without it. I grieve a version of myself I can imagine but cannot reach.

The old Tyrell. The Tyrell without autoimmune diseases, extreme fatigue or chronic pain.

I have become so accustomed to hurting that I cannot remember the last time I felt genuinely fine. I cannot remember waking without an ache, moving without hesitation or reaching the end of the day without pain taking up space.

Pain has become my normal, and even sleep does not offer an escape.

Most nights, I survive on two or three hours of interrupted sleep. I turn from side to side, trying to find a position my body will accept. Every position hurts. My body is exhausted, but the pain will not let it switch off. Just as exhaustion finally pulls me under, the pain wakes me again. I glance at the time. An hour has passed. I eventually fall asleep, only to wake a short while later and repeat the same process.

By morning, whatever sleep I managed has been broken into fragments too small to feel like rest. Still, the day expects me to participate. I am expected to get up. I am expected to function. I am expected to carry on while my entire body is screaming in agony.

I already take multiple medications every day, so I refuse to take painkillers unless I can no longer bear what I am feeling. I tell myself that I can manage without them. I push through for as long as possible, until the pain becomes too loud to ignore and enduring it no longer feels like a choice.

Even simple tasks carry a cost. Standing for too long can wipe me out. At first, I try to ignore the discomfort. I shift my weight from one leg to the other, seeking a position that might offer some relief. Eventually, my body reaches its limit, whether I am ready or not.

I am 30 years old, 31 by the time this comes out, and I walk with a limp.

People may see how I walk, but they do not see the mental effort behind each step: assessing how far I can go and how much pain I will face afterwards.

Festivals and events with friends, things that should give me something to look forward to, become another calculation. How long will I have to stand? Will there be somewhere to sit? How far will I have to walk? Is there anywhere for me to park? How much pain will I be in tomorrow?

Sometimes, I try to convince myself I can manage. I want to enjoy the music, the atmosphere and the company of those around me. I want to be present without constantly listening to my body. But the pain always finds a way to be the loudest thing in the room.

Eventually, I have to leave. Sometimes because I feel unwell; sometimes because my body simply cannot take it anymore. I say goodbye while everyone carries on, knowing the night is not over for them. It is only over for me.

Sometimes, I even leave without saying goodbye. I do not leave because I am bored. I do not leave because I do not want to be there. I leave because my body has decided for me.

Socialising requires energy my body no longer freely gives. Even spending time with people I love can leave me depleted, making me withdraw and feel isolated.

Bowling is one of my favourite activities. I love the competition, the laughter and the feeling of aiming correctly and knowing it is a strike. Every time I go, however, I have to accept what will come with it.

Bending, lifting the ball and repeating the movement leave me in excruciating pain. I know I may suffer throughout the game and for several days afterwards. Before I even arrive, I already know the price my body will make me pay for those few hours of enjoyment. But I always go.

I do not stay home. I bowl through the pain because I refuse to allow chronic pain to take everything I enjoy from me. For those few hours, I choose the laughter, the competition, the people around me and the possibility of winning, even knowing what will happen afterwards.

Perhaps that is difficult for some people to understand. If bowling causes so much pain, why do I continue? Why do I push through, knowing how badly it will affect me later?

I ask myself the same questions. For now, I carry them with me, alongside all the others.

Then there are the questions people ask me. How are you? How do you feel?

These are ordinary questions, usually asked with good intentions, but I rarely answer them truthfully. How can I? 

Nine times out of ten, I downplay everything. I put on a brave face and make what I am carrying appear lighter than it is. I’m alright. Just tired. Just working. I’ll be fine.

The words come automatically. I reduce the pain to tiredness, then hide the tiredness behind work, making everything sound temporary: something easier for other people to hear.

There have been times when I have told the truth, only to be met with criticism and sarcasm.

“What have you done to be tired?”

“Are you always tired?”

“You’ve barely done anything all day.”

Those remarks stay with me. They teach me that honesty comes with the risk of being questioned, dismissed or made to feel as though I have not earned the right to be exhausted.

The reality is that I have probably done far more than I should have, simply to avoid hearing those words. I push my body beyond its limits so nobody can accuse me of not doing enough.

I keep moving when I need to stop. I say yes when my body is telling me no. I try to stay one step ahead of their judgement, even when doing so leaves me further behind physically.

By the time somebody asks how I am, I have already decided how much of the truth they are allowed to hear.

Sometimes, after pushing myself through another day, I arrive home and sit in my car in the driveway for thirty minutes, sometimes an hour. The engine is off. I have no energy to pick up my phone. I am stiff, in pain and shattered. I am home, but I physically cannot move, get out of the car or make it to the front door. Sometimes, I fall asleep because I am so tired and in so much pain.

I try to break the journey into steps because thinking about doing it all at once feels impossible. My legs feel like cement, heavy and unwilling. I know what will happen when I stand. Pain will tear through my body, and gravity will pull me down if I do not lean on something. So I remain in the car.

Sometimes, I scroll through my phone without taking in a single word. Sometimes, I sit in silence. Sometimes, I stare at my wing mirrors, looking at the front door, and wonder how such a small distance can feel so far away.

I become frustrated with myself. Getting out of a car should not require courage. Walking into my home should not feel like another obstacle to overcome.

I think about everything I still need to do once I am inside. Take off my shoes. Walk upstairs. Get changed. Shower. Find something to eat. Prepare myself for another night of trying and failing to get comfortable.

Eventually, I force myself to move. Not because the pain has eased, but because I cannot remain in the car forever. I open the door. I place one foot on the ground. I brace myself and pull my six-foot-two frame out of the car.

Then I stand and let the pain arrive. Whether I move quickly or slowly, I am still moving through pain.

Some days, I do not know what to do with myself. I do not know how to approach my life, handle what I am going through or trust that what I am feeling is real.

Sometimes, I question whether I am being punished. I question what I could have done to deserve a body that makes simply existing feel like a fight. I question whether I am strong enough to keep carrying something with no visible end.

I yearn for the days when pain was temporary, when it came from an accidental injury, and I could trust that, eventually, it would heal. Back then, pain had an explanation. It had an ending.

Now, it is simply there. This is the part of chronic pain that people do not always see. It is not only what happens inside my body. It is the way pain enters my thoughts, shapes my choices, changes my relationships and makes me question who I might have been without it.

I am not lazy. I am not exaggerating. I am exhausted from fighting a battle that begins again every morning, if it ever truly stopped during the night.

So why do I continue bowling when I know how much pain it will cause me? Why do I attend events, spend time with my friends and push myself through experiences I know I will pay for afterwards? Why do I love driving, even though I know getting out of the car will be painful?

Avoiding everything that hurts would mean avoiding almost everything.

Protecting myself from pain would not give me my life back. It would only make my life smaller.

So, I go. I play. I laugh. I drive.

I endure the pain while I am there, and I deal with the consequences afterwards. Not because I have forgotten what it will cost me, but because there are still parts of my life I refuse to surrender.

I do not live with chronic pain because I am strong enough to bear it. I live with it because I have no choice except to keep living with it.

This life hurts, yet it is still mine.

The pain remains, and so do I.