Death row

 My made-up health conditions some tell me daily oh you're so over exaggerating, some call me lazy, some even think I should kill myself.  This time, the pain was more of an occasional visitor in my body rather than the permanent tenant it has since become. Still, I was offended on behalf of those patients with all the hidden diseases.

I have a condition known as Hemicrania continua, quite literally "continuous half-head pain". My left side is affected, where I suffer a permanent background headache with a pain scale of about 6-7 most days which is extremely debilitating. On top of the normal headache, I also experience spikes where a sudden, very sharp pain starts up and does one of two things: a short-lived but deliberating shock pain spike, or it rapidly increases the background headache and the pain stays around all day.

The largest problem with Hemicrania (aside from the lack of a cure) is the triggers of the headache: light, sound, stress and lack of sleep. Light and sound are very hard things to avoid, with the worst from both categories being fluorescent tube lights, high pitch noises are no go! Indometacin is used to treat (not *cure*) the condition, but unfortunately I am unable to take Indometacin due to the horrid barrage of side effects it unleashes. My "treatment" at the moment is just trying my best to manage what triggers it, while I hope for a reason or a cure to be found. I've been keeping up to date with research papers and they've been finding so-called secondary Hemicrania, so hopefully, the reason will be found soon. Then people may decide to believe me when I say I have a problem, and respect and help that way.

I have these injections quarterly, I look like Quasimodo for a few hours, can't touch my head for days, washing my hair is torture, can't chew...the list is long but I feel blessed to be alive despite what you're reading. 

Fast forward to today and my life is all about pacing. This is because everything I do — cook, sleep, work, walk — takes time. This gradual approach to every aspect of my life is not about enlightenment or mindfulness. It is about pain. Or more specifically, trying to evade or minimize it. To minimize is key because I’ve learned it can’t be avoided, at least not entirely, no matter my effort. For me, my conditions became a default diagnosis — a catch-all phrase the doctors slapped on me to encompass all the aches and health complaints that had begun to persistently plague me. I received many diagnoses even as imaging/ tests showed degenerative changes and other damages, even as everything was confirmed to be spreading like strands of spider web inside my body, wrapping its tendrils around my organs with the insidiousness of an invasive plant. When the pain reached the point of making it impossible to work more than on a part-time basis most weeks or having to be off sick every six months as I can't cope with all my multiple medical conditions.

“You don’t seem sick,” they said

This was the same line I was offered in school after extreme distress growing up caused me to lose more than 20 pounds in a single semester. But the school nutritionist thought I just wasn’t eating enough bananas. “You have such shiny, healthy-looking hair,” she explained, pinching a lock of it between her fingers as though I were a doll on display. “People who are sick don’t have hair like yours.” everything showed nothing visibly wrong, so the doctors treated me as though I was a hopeless neurotic. “Stop being so stressed and eat your greens" But by then I learned the hard lesson that doctors often erred on the side of disbelief when they couldn’t see something plainly… or even when they could.

I have heard an extensive list of reasons why I can’t be in as much pain as I say despite my test results… and besides my shiny hair, like: I am too young; I have everything going for me; I’m too Athletic to have any problems. Yet, these haven’t granted me immunity from illness, and they have not prevented pain.

Only recently has medical research started to catch up on what patients are suffering from chronic pain have long known. A  study discovered that pain can endure long after the illness or injury that caused its initial onset has been treated or healed, until it eventually evolves, or devolves, into its disease. That is, pain is no longer indicative of another prognosis — it is the prognosis, and a disabling one at that.

Specifically, under the strain of prolonged pain, nerves not only become super-sensitized to pain signals but begin amplifying them. Once these changes occur, they can be extremely difficult to undo. Meanwhile, most medical students are woefully lacking in training in chronic pain, usually receiving only a few hours’ worths in their entire education. Veterinarians receive more training on how to treat animals in pain than medical doctors do for their human patients. Unfortunately, without an adequate understanding of pain and its mechanisms, many medical practitioners are quick to downplay the experience of their patients as faking or exaggerating. What this translates into is denying a disability because it is invisible to the naked eye.

Wiser doctors needed

What would help me at this point would be to have practitioners who are not only more well-versed in chronic pain, but are willing to acknowledge its disabling impacts on their patients. In other words, doctors should start believing their patients when they say they are hurting. Validation is the first step toward a solution, or at the least, toward offering alternative adjustments and treatments that can accommodate a pain patient and bring them a better quality of life in the absence of a long-term cure.

Initially, it was just fatigue and pain. Today, it’s grown to encompass my entire life.

Chronic pain has left me in a prison of my existence, unable to escape. I spend nearly 24 hours a day on my back between the bed and the sofa when I am not forced to see the world as I struggle to even sit upright. I struggle to get down or up the stairs and my body aches constantly. My muscles sometimes give up on me in the middle of activity as simple as holding up my phone or bringing a glass of water to my lips. I have had a headache not a normal type headache ever since I can remember. I can’t make many meals for myself anymore, and my quality of life has decreased to barely anything.

At times, it hurts even to take a breath.

A visit to the local shops is a luxury. I have been on dozens of medications, spoken with dozens of doctors, had testing done, tried alternative therapies, and done everything I can afford. Nothing has truly worked at relieving the severe and constant chronic pain.

I am only 40 years old. So many of my interests — like home renovations, weightlifting, cooking, walking — I can no longer do. While my symptoms have grown increasingly intense,   I continually face alongside the more widespread pain. My body is slowly giving up on me. Though I continue to try to gain some control over it with my Neurologist and additional specialists, month after month, it has only gotten worse.

“Torture”

After years of trying to find improvements, I decided by realising that my quality of life was no longer there and that it would not return. After having spent almost a decade with this condition, I believe in my heart of hearts that this is going to be my life. I do not wish to be defined by my chronic pain nor do I want to spend 60 more years in this agony with no visible end in sight and only further complications awaiting me. I fear losing my job, and I have lost everything that made me smile. 

I have enjoyed sharing my reality with you and always remember you are not alone 💚