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Why I Am Done Trying to ‘Fix’ My Pain

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I am done trying to fix my pain. This is not a popular decision — even my doctors don’t like to hear this. However, I am exhausted trying to fix it. Let me explain.

I have had a headache for over 40 years. That is not an exaggeration. I mean, literally, I have had a headache every day as long as I can remember. I am 45 now. My mom confirmed I would complain about a background headache as a tiny girl. It was “mild” most of my life, usually about a 3 or 4 on the pain scale. I could tune it out pretty easily. I told my doctors in my 20s and when they didn’t worry about it, neither did I.

Then in May of 2013, at 38, it escalated. I had an allergy attack while shopping. Dizzy, nauseated and with hives I went home, took an anti-histamine and a nap. I woke up at an 8 for pain and it never went back down. I spent the next few weeks trying to find something to take the edge off. I tried every safe combo of over-the-counter meds I could. I would find a closet at work to sit and cry in the dark. I finally broke down, a month later, and went to my doctor.

She was properly upset I had not come in sooner and immediately sent me for an MRI. Fortunately there was no brain tumor, but it would be another four months before I would find out I had something called intracranial hypertension. I had high pressure inside my head that was caused by too much spinal fluid in my system. (It used to be called pseudotumor because it has all the symptoms of a brain tumor, but no tumor exists.) Prior to imaging, surgeons would even perform brain surgery looking for this fake tumor.

Today, I live at an 8/9 on the pain scale all the time. Seriously: all the time. I’m allergic to most pain meds, and I don’t get relief. Sometimes it escalates to what I call a 10, where I can no longer function at all. It feels like my skull will literally shatter into my head, or like a vice is squeezing my head tighter and tighter. I had my tonsils out at 43 and did not need pain killers because the pain never came close to the amount I already live with.

In the six years since my pain escalated, I have tried almost every treatment that western medicine has to offer. I have also tried numerous alternative options. I live in Colorado, and even the magical marijuana has not helped; in fact, it causes pain to get worse for me.

Each time I try something new, I hope for a different outcome and after months of trying, I have to stop and accept that this new treatment isn’t helping. Spinal taps help. I have had 15. Removing the excess fluid from around my head provides relief for a couple days. My doctor would like me to have a shunt, which means brain surgery, to help reduce fluid on a regular basis. I am still refusing for a multitude of reasons including its failure rate as a medical device, it’s failure to consistently help with pain and my prior immune reactions to silicone.

At this time, I want to stop trying to fix it. I am tired of the constant cycle of hope, failure and depression when trying something new. I need to accept this is my life. I need to figure out how to balance my physical and social needs. I need to remember that I am OK and have to value exactly as I am.

I am tired of the questions about what I have tried, tired of repeating the extremely long list of everything that has failed me. I am tired of listening to the suggestions from other people of what I should try. I am tired of justifying the decision not to have a hole drilled through my brain. I am tired of explaining why I need to accept my journey.

So, let me say this again: I am done trying to fix my pain. Please do not confuse this with giving up. I want to be better, I want the pain to end. I can’t even imagine how I live like this every day for the next 40 years. But it is my reality and I have to learn to live with it.

Learning to love my life right now is the opposite of giving up. Embracing what I have is about hope for the life I can live. I expect to have a lot of life left; I may have to spend them in pain but I don’t want to spend my limited energy fighting my disorders. I want to find ways to be happy and experience every bit I can. And when I get to the place of acceptance and love, I’ll try again. When I know that a failed attempt won’t set me back, I’ll try again. But now, right now, I just need to press pause for a moment and that is OK.

Image via Liz Biermann.

Originally published: November 19, 2019
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