As I have gotten older, my skin has taken on more of an olive complexion like my Mother. My Father, on the other hand, could snow blind a person if they stared at his long, flamingo like legs long enough. Now I did get the long flamingo legs and when I was a child though not as snow white fair, I was much more prone to getting sun burnt then I am now. Growing up in Southern California, with a once a year trip to Pismo Beach….. along with numerous weekend trips and occasional spring break getaways….. I got more than my fill of sun burns.
So what does a sunburn and fibromyalgia have in common? Sensory overload. The best way I can describe what sensory overload is like for a fibro patient is to say it is like your senses have a bad sunburn. First let me tell you, from personal experience, what hell it is going through life as….. my husband Paul puts it….. with ‘super human senses’ without any sort of boost in stamina or strength. In fact if anything just the opposite is true.It is like having Superman senses with the energy of a cell phone on that last single bar before it poops out on you.
The best way to describe sensory overload in a simple way is to say everything is amplified. Every sound, taste, temperature, texture, light, odor and even the smallest thing that is not as it should be…. something that would not be noticed by the average person….. can be overwhelming to someone with fibro because of this strange and recently noticed quirk of this condition.
- SOUNDS: Paul and I have a ritual each morning. Now Paul has a small touch of TMJ so his jaw slightly clicks when he eats. Most people would not even begin to notice this slight click. But to me it is as if someone has a little ‘clicker’ right at my ear, with a mega-phone, and is clicking away at the rate someone can eat cereal. Then, of course, there is the crunch of the cereal. So our ritual is (him knowing and respecting it is me and not him) that we get some music going if it is not already on. I can also hear the neighbors….. I could even hear the last one below us snore (though in all fairness Paul could too at times). The worst is the night. When the insomnia is in full speed, the silence of the night is so loud. There is no silence for me. My silence is like a loud, high pitched, buzzing that never goes away. Basically, my silence is a loud, shrilling form of tinnitus. http://en.wikipedia.org/wiki/Tinnitus . Some say silence is golden…. I say silence is hell. For those that have had a chance to see a harrier jet in person, you will know those babies are loud! Before leaving my home state of California, we used to frequent air shows …. love them! What a rush! I saw this beauty of a jet…. and heard it. YIKES! (It was also featured in the movie “True Lies” with Arnold Schwarzenegger). The harrier can land and take off (almost) like a helicopter. It needs almost no runway. If I had then, what I have now as far as sensory overload, I would have bolted. Now, seeing the harrier would be unbearable. The other thing is balloons. Or should I say popping balloons. Now I am rounding up theories here, so pay attention, because in a few months I am going to take these theories and make a post out of them. Also pay attention to this statement very closely: I have always hated popping balloons. More than that, the tins you get with cinnamon rolls, pizza dough, etc that you unroll the paper and they “POP!”, I have always been scared witless of those and do not open them unless I have to. Champagne corks, firecrackers and even the 4th of July fireworks turn me into jello! My Dad used to tell me about the time I was a young child and they took me to the fireworks display at Bakersfield College. We had to leave shortly into it…… I could not take the loud popping of the fireworks.
- TASTE: Being from California where real Mexican food comes from, I love my ethnic cuisine. While I have never been a huge fan of overly spicy food, I was always one to like a bit of a kick to my food. Not anymore. Even the smallest amount of heat….. as in spicy heat….. ruins food for me. I just cannot take it. Foods that the average person would not consider spicy or maybe mild spicy, I consider three-alarm, off the charts spicy. Having to re-order food at eating establishments on more than one occasion (that the server has claimed are not spicy), I have learned to steer clear of anything that has the slightest description of even a hint of spice. I believe my taste buds are probably the most sensitive part of my body. Talk about sensory overload, there is just no adequate way to describe the way my taste buds react to food. Paul has become a big help in this department…… knowing if a dish would suit me or not. It was not always this way, but he has learned. He is almost as good at knowing what will suit me as I am. A good example is Totino’s pizza rolls….. the supreme flavor (with meat)…. they are too zesty for me. For most, they would not be hot at all, for me, I cannot take the seasoning.
- TEXTURES: As a kid growing up in sunny California, I went around bare footed nine months out of the year. Running with my friends on the 800 block of Woodrow Ave in the Oildale area of Bakersfield playing tag, riding bikes, playing hop-scotch, double-dutch jump rope and hide-and-go-seek 90% of the time I was bare footed. I stepped on 100 degree pavement, stones, burrs in the grass and everything else one might imagine. It did not faze me. I was never overly picky about the texture of my clothing or coats and gloves. My Great-Aunt would knit me winter scarves, hats and gloves and they came in various widths and textures. There was never an issue with any of these warm delights. As an adult, the only thing I was opposed to was ‘itchy sweaters’ and was never a fan of silk. Other than that, I was never fussy….. at least until my fibro took such a bad turn. When my senses got turned up to full blast, it was as if the receptors in my skin could feel every fiber in the clothing I would wear. Every glove, scarf, shirt, pants, sleep garments, socks, sandals, etc. I can no longer go bare-footed. I must even wear flip flops in the house because of the carpet fibers. It is like clothing touching skin when it is sun-burnt…… only it is the nerve endings. So I guess one could say you have ‘sun-burnt nerve endings’.
- SIGHT: “I’ve got sunshine on a cloudy day. When it’s cold outside, I’ve go the month of May…..”. Awwww…. I love that song; who doesn’t? It is, nonetheless, true for me. I have sunshine even on cloudy days. You will find me sporting my ‘Audrey Hepburn finest sunglasses’ most every day. Howbeit, it is not to look like a cool chick! No, it is because even in the dimmest of light my eyes are very sensitive to sunshine and all bright light. I also have issues with strobe lights, overbearing colors, etc.
- TEMPERATURE SENSITIVITY: This one speaks for itself. I cannot stand cold water. I do not get into the pool until we get our first good heat wave and the water temperature is well above 85 degrees Fahrenheit. Likewise extreme cold days as well as extreme hot, humid days absolutely shatter me. Growing up in the hot, dry desert of Bakersfield, I can bear 110 degrees at 10% humidity more than I can 85 degrees at 90% humidity any day! On the flip side cold is the absolute worst enemy of a fibro patient.
- ODORS: This is perhaps the most frustrating of all the senses that get ‘overloaded’….. especially with secondary conditions such as asthma and a severe nicotine allergy. For someone with such bad sinuses, I have the nose of a bloodhound. Bad odors can flatten me with nausea in seconds flat. I am often saying to Paul, “Do you smell_______?”. Many times he does not…. but some times he does. When we moved to town from living in the country, after my youngest daughter graduated from High School (I lived close to her Dad’s house to make it easy for her to go from house to house), we moved right above an elderly couple…. that had oxygen vented into their apartment…… and were virtual chain smokers. Because they had the oxygen vented into their apartment, they had to smoke on their balcony. They went in and out, in and out, in and out…. every 15-30 minutes from 6 AM until 10 PM at night. The management could not do anything about it because they were ‘free to smoke on their balcony’ and the man was extremely confrontational. They knew they were killing themselves (the ambulance came to get one or the other on more than one occasion the times we saw) but they did not care….. and the man said so! They loved their smokes and made no bones about it! We were prisoners of our home the first year…. unable to open our window except for the one week they went on vacation. I was never so happy to see two people move. This issue, in part, actually caused someone to dislike me before they ever knew me. I won’t go into what happened or who the person was that decided they did not like me before they ever met me. I was, nonetheless, a victim of prejudgement. It also caused that person the loss of respect of myself as well as my husband….. something that says a lot. Having sensory overload makes you so vulnerable physically, it opens you up to even more criticism than just having fibromyalgia alone does. One good way of putting it is: when you have all the crap going on involved with sensory overload; it is like you are a porcupine with your skin inside out!
Though each of the senses I described get overloaded, much of the time a fibro sufferer just feels like they are completely overwhelmed…. especially in a place where there is a lot of people, it is loud, there are a lot of bright lights or they are in a stressful/ nervous situation. It is much like that cliched part of every movie where the main character gets overwhelmed….. the music swells to a great dramatic suspense….. and the character bolts out of the room in heated anxiety! For a fibro sensory overload, that is exactly what a overload panic attack is like. You just cannot take it and you bolt. Since this is a recently ‘stumbled upon’ subject….. or should I say the elephant in the room that fibro patients are finally talking about (because we have enough stigmas with our condition as it is), the experts say removing yourself when you get overloaded is exactly the right thing to do! In fact to prevent overload, experts suggest patients that know they are going to a big event or situation that may cause overload adequately rest, mentally prepare and make sure they are ready to face whatever it is that may cause the overload. If there is a situation that you know will likely cause overload, the best course of action may be just to avoid it altogether.
Fibromyalgia comes with a bucket load of symptoms and annoyances. Though sensory overload is newly acknowledged, it has always been a part of the many struggles for the fibro patient. As if all the other difficulties of fibro, including the stigma attached are not enough, sensory overload is another obstacle to deal with. However, recognizing its existence, planning accordingly and removing yourself when things get overwhelming can help cope with this frustration. Until next time, K.