When I began my very first treatment for Bartonella I had mentally prepared myself. I knew my symptoms would flare, I knew I would experience herxheimer reactions, and I knew that while on treatment things could be unpredictable. But the key here is that I knew why all of that was going to happen. Therefore when my symptoms did inevitably flare I understood that my pain was a direct cause and effect of treatment, and therefore I was prepared & educated. Somehow on a mental level that helped me get through it.
It's a little bit like getting your ear pierced. Let's say we have Person 1. While her ear is being prepped she is told that she will have a few moments of quick pain as the piercing gun goes through, and then afterwards there will be some soreness. Person 1 is prepared with all the info needed, and surprisingly the piercing isn't so bad. Then you have Person 2. She is blindfolded and can't hear, but she's just minding her own business kicked back on a couch relaxing. Then suddenly out of nowhere a sharp stab goes through her ear and it begins to throb and ache. Person 2 is frantically trying to figure out what just happened, how to make the pain stop, or what to do. The same exact thing happened to both people (their ears were pierced), but one was prepared & knew WHY the pain would come. Which person do you imagine would report the highest levels of pain for the same procedure? Yup.. Person 2!
Now that was a silly example, but it was the closest real world comparison which I was able to think of. Mentally, knowing that pain is coming, or even knowing WHY it's happening makes it more bearable. I've experienced this phenomenon time and time again. I've been up against some of the most brutal herxheimer's during my time in treatment, and my family can attest that I pushed through them like a boss. I was physically exhausted and going through the ringer, but I was mentally still swinging. I had a purpose & there was a cause for my pain. I understood that, and even if it just took an ounce of the edge off, it helped.
But then there's the other type of pain.. the pain which doesn't have answers. The pain which comes unannounced and doesn't respond to any of the usual methods of relief. The pain which you have to spend hours researching online to find the cause & try to stop it. The pain which is not tied to any kind of direct cause & effect which you can see. The pain which brings you to your knees mentally. This is the pain which exists without the WHY, and it exists in such a powerful way that you wonder if you will survive it. You wonder if you're slowly dying on the inside. You begin to wonder if you're going crazy or if something is seriously wrong and you're just missing it. Tears are shed; from frustration, from fear, from the unknown. Suddenly nothing feels like it makes sense, and your only purpose is working backwards to find the puzzle pieces which will stop this pain.
Sometimes I feel myself crack underneath my strong exterior. I feel the sadness levels rise as they pull me under the waves of helplessness. And those times are when I'm living in the world of "Pain without the WHY." My mind starts to lose steam when it doesn't have any concrete answers to fuel it. Pain feels much tougher to bear when it doesn't come with an expiration date. When will it end? Why did it start? How can I ease it? What triggers it? Living in a world without the WHY is like living in a snow globe where the same song is playing over and over but you can't escape. You're simply trapped with the unidentified pain searing your body on repeat.
I have yet to find a good way to cope when I'm stuck in the land of "Pain without the WHY." I wish I could say some prayer or meditation get me through the long months between answers. I wish I could say anything actually does it for me, but truly the only way I keep going is by never giving up investigating. I put my detective cap on & I start to hunt down the clues my body gives me. I pair that with test results & gut instincts until somehow it starts to translate into real world results. I've learned that no one else is going to fight for you if you don't do it. No one else is going to solve your worries, your pains, your fears. Mentally it's just you. And ironically the very thing which breaks you (the pain), is the very thing which won't stop until you put the work in to make it stop. Living in the "Pain without the WHY" is a lonely locale. Table for 1 please. It's isolating to be on a deserted island fishing for answers, and sometimes it wears on the soul.
But I know that the one thing I'm not alone in is this feeling. If you've experienced pain then you know the difference between pain with a purpose vs pain without answers. They live on different scales, and it feels like they exist in different realms. It's a mental game through & through, and only the strongest survive. So here's to strength... strength in the darkest hours, strength in the longest months, and finding enough strength to keep the boat afloat until it lands back on the shore of certainty.