Well, I decided to go to the movies with a girlfriend yesterday, and, boy, did I pay a steep price of admission! And I’m not just talking about the $10.50 at the door. It was one of those nights where my body set up revolt against me as soon as I returned home. I know, I know! The nerve I had engaging in an activity where I sat for 2 hours. How the heck did that “strain” weaken my body?
But, it did. I just never know what is going to trigger an avalanche of unpleasant symptoms. It’s the enigma of my disease. And, I like puzzles, don’t get me wrong; I’m just reaching my limit on how many more twists and turns I can handle from my own body. This time, it just didn’t respond well (big understatement!) to being still and stiffened for a prolonged period. But most likely it was a culmination of all the stress and strain I have endured over the last two weeks; all those tiny little fissures in my carefully balanced everyday existence.
So, last night, I come home from watching The Heat, still chuckling at the crazy antics of Melissa McCarthy. I was feeling positive that I nurtured my mental health with a little laughter therapy with a friend. But as soon as I settled on to the couch, I could feel “The Change” coming on. It sounds like I am The Hulk, but in some ways that’s exactly how I feel! My body loves to play Jekyll and Hyde on me, and I never know when this painful transition will occur.
It starts with a deep fatigue settling into every fiber of my being and I begin to feel separated from my conscious mind. Then the nerve sensations strike up their marching band… this last development being the worst. “Nerve sensations, what’s that?” you may wonder. It’s the hardest to explain, but I’ll give it a go: imagine feeling like you’ve just been plugged into a socket and electrical impulses are shooting up and down your arms, and even worse, up and down your spine. Then the “creepy-crawlies” start, like minute bugs crawling beneath your skin. Your skin stops being able to regulate its own body temperature and you fluctuate between feeling hot and clammy and cold and goose-bumpy. You may experience the sensation of “walking on hot coals” and/or numbness and tingling in your extremities and down your arms. Your joints become stiff, your balance is off, and you lose all depth perception. Sometimes a little vertigo is thrown in the mix for good measure- yeah! Then something called “hypergelsia” kicks in. This literally means: “Hyper-Sensitivity.” The skin on your body reacts to the slightest touch as if you are being burned or stabbed… think of something extremely unpleasant! This “touch” can come from another person, but it can also come from the whisper of a breeze on your skin, or even worse, just the touch of the couch beneath your body.
Last night, my body was in the throes of all of the above! The only thing I gratefully escaped was the vertigo, but I had a killer headache in its place. It is so difficult to explain to someone else what this is like. As you can tell from my description, it’s all very abstract… “Plugged into an electrical socket? The feel of a blanket, hurting you?! All sounds pretty wacky to me!” But, I hope you can suspend belief for a short bit, and try to just get a glimmer of an idea about how this must feel for many of us with autoimmune disease (like mine, Relapsing Polychondritis), chronic fatigue, fibromyalgia, migraine disease, Lyme disease, etc… These are not just the “silent diseases” they are also ones that just at the beginning of last century would be labeled “hysteria.” And you can see why… it sounds like I am hysterical.
But, what is actually happening is that my body was exposed to too many stimuli and it is attacking itself. It no longer has the natural defenses to process multiple stimuli, stress, environmental toxins, bacteria and viruses. It sees everything as the enemy. And when my body feels attacked, it attacks back. Unfortunately, somewhere along the journey, it lost the ability to distinguish between harmful elements that need attacking (from the flu to cancer) and those things that are naturally occurring substances that are vital to my body’s health. It now attacks anything and everything. The things most often in its path?: my own body, cells, nervous system, bones, cartilage, internal organs, etc.
For me personally, this attack can look like anything from my colon perforating, to having a heart attack, to my kidneys failing, to full body rashes, to histamine reactions (like I’ve been exposed to an allergen), to destruction of my cartilage, to degenerative spine, to full body hyper-sensitivity. And, surprisingly, the most difficult thing on that list is the last one. Because doctors, for the most part, know how to treat the “bigger,” more concrete reactions. But how to treat a crazy list of symptoms like the ones above?! Therein lays the mystery.
So, that brings me to last night where I was writhing on the couch like a drowning worm. Struggling to find a comfortable position; changing my positions as often as one madly clicks through a hundred channels on the T.V. I was groaning and crying. Whining to the Universe, “I just can’t take this anymore!” Absolutely nothing helped… not even “knock you out doses” of valium!
And my husband sat helpless to help and I sat helpless to ask for help. He kept saying, “What’s going on?” and “What can I do?” With each repeated question, his anxiety levels rose and his voice became more and more agitated. And I felt increasingly powerless in how to explain what was going on. I know his frustration wasn’t at me but at my illness and his inability to find a “solution.” But the only answer to “fix me” was TIME. I just had to wait out the storm. And in the meantime, having him rub my spasming spine and hold my hand until I fell it to a fitful sleep was the best medicine. To know I wasn’t going through this completely alone.
And I made it through the night! Which makes me want to cry in relief. I still feel almost hung over and like my body was in a car accident. But I’m able to sit here and type, so I must be doing better. Now the tricky part is taking care of me over the next couple days so that my body can heal. And does this mean that next time I’ll skip the movies? No way. Because unfortunately the trigger to these episodes is always different. But, I guess that’s a gift in some strange way. Because I can’t predict what will set me off, I also won’t keep myself from truly interacting in life because I am in fear of the “what if.” This doesn’t mean that what happened last night doesn’t scare the bejeezus out of me. It does! It just means I’m not going to let that fear rule my life.
I am going to keep on living today, no matter the consequences!