It is here! It is that one day for ‘us’…. those of us with the ‘invisible’ illness… condition…. disease….. however you want to define it; that which would be known as, fibromyalgia. As a near twenty year veteran of this soul-crushing malady, what would I want to choose to make people most ‘aware’ of if I had center stage and full attention of the world? If the world were my audience and I had the biggest bullhorn known to human-kind… what would I make them aware of regarding this…. this….. fibromyalgia! This is the thought I have been kicking around and that is the direction I am taking this blog post. I have the attention of billions of people who did not know much, if anything, about fibromyalgia! Here I go!
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: 24/7, NON-STOPPING PAIN: Pain is the obvious symptom, forefront of fibromyalgia. My first symptom, many, many moons ago was numbness in my hips. As a new mother of my beautiful, amazing (youngest) infant daughter, I did not realize that the very thing that triggered my fibromyalgia; getting the chicken pox aka the Varicella Zoster Virus, at 18 weeks pregnant, and then getting the shingles (same virus) 4 weeks later would leave me “never feeling the same again”. I have said this before and I will say this again: I in no way, shape or form blame this on the pregnancy. I would have gotten the chicken pox pregnant or not. The fact that I was pregnant only served to worry me sick that I had in some way harmed my unborn daughter. The running joke now… because she is as close to perfect as it gets is….. If it wasn’t for those testy chicken pox, she would be giving Sheldon Cooper (“The Big Bang Theory”) a run for his money. Instead of a gifted double majoring (College) flute player, she would be a super nuclear scientist in some lab somewhere. Naw, too boring. I will take my delightful, colorful, talented daughter just as she is 😉 (and you all know this is a joke!…not that she is gifted…. that I would take her any other way than just as she is… back to the point). The truth is, I got the pox, I was more worried what they would do to her (nothing), and they are what started the fibromyalgia (I was never the same after getting them). In any event, the pain that we with fibro have it…. it never stops. It sometimes lessens, but it never goes away. If you are a non-fibro patient reading this, imagine having a headache, flu or being sore after exercising. Now imagine that never stopping. Never. Not a day. Not an hour. Not a minute. No relief. Ever. That is the life we lead with our pain. It goes on and on. The medications we take? They do not make the pain go away, they simply dull it….. a little bit.
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: THAT I HAVE A HEADACHE EVERY SINGLE DAY: I would say that about one third to one quarter of my month would be labeled as bad headache days. The rest of those days I just get ‘day to day dull headaches’. I do, in any event, always have a headache (note I did not say ‘get’ because there is no get when there is no beginning or end… it is always there). It is rare to find any given moment in time when I do not have some form of headache. Whether it is small or pounding, my head always hurts in some fashion. It does not matter if I have gotten a good amount of sleep or if I am sliding by on just a few hours, my head will be hurting. Most fibro patients have the same problem. Headaches are one of the most common shared problems among those of us with fibro. While I understand headaches are a very common problem in society as a whole, this is a very good common denominator to share with people. Imagine as a normal person struggling with headache you are also aching all over, having issues with your gut, every light is too bright, every smell is overwhelming every single thing you touch is over stimulating and you have to watch everything you eat because even the mildest of spices sends your taste buds into total over-reaction. Now imagine all this is going on and you are nervous and anxious. On top of this you cannot sleep properly. To make matters worse, you are being labeled and judged. This is not just a ‘run of the mill’ headache anymore. This is a headache on top of a roaring, angry volcano. Some of the headache days are migraines (I had an eight day string up until just a few days ago). I average about three to eight migraines a month. Migraines are bad enough alone, but add everything else and…. well, I need no further explanation.
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: THAT MY ‘GUT’ IS ALWAYS HAVING ISSUES: Most fibro patients suffer from Irritable Bowel Syndrome. I will try to keep this from being a ‘TMI’ moment, all the same, I would be doing a great disservice if I sugar coated what a messed up middle area I have. Nearly every fellow warrior in this condition of catastrophe can attest. I don’t know that I am acquainted with a single fibro friend that does not have IBS or other stomach/intestinal issues. Many have things that are tangible (show up on scans, blood tests, etc.) such as ulcers, diveriticulitis, Chron’s, etc. Nausea is very common and in fact I take anti-nausea medications on a daily basis. Some symptoms overlap. For instance my nausea can be worsened by headaches or disequilibrium (related to sensory overload) thereby making the nausea coming from more than one source. So along with pain and headaches, the gut gets its share of the attention.
- I WOULD CHOOSE TO MAKE PEOPLE AWARE:
THAT MY SLEEP PATTERNS ARE UNSTABLE , MY SLEEP QUALITY IS POOR AND MARKED BY SIGNIFICANT INSOMNIA: I am, at times, a walking zombie. I know years back there are those that thought I was ‘over medicated’ and there were those in my life that talked behind my back regarding this matter (did they really think I was not aware of this?). I was not over medicated then and I am even less medicated (and in much more in pain) now. Then, now: it stinks! I do not go to bed after the 11 PM news and go to sleep for the night like 90% of the population. I do not go to bed and read a good book until I start drifting off to dreamland (I am thinking of every TV show in existence when wife is in bed with her book and husband is talking over their current situation for that episode). No, 99% of the time I fall asleep on the couch. I have an amazing husband who rubs my neck, shoulders, arms (the last several months my arms have really been giving me high pain levels), or he does reflexology on my feet. ‘He’ is by far my most relaxing ‘medication’. At some point I transition to bed. Sometimes my transition is when he is going to bed between about 12 midnight and 1 AM; other times it can be as early as 2 AM and as late as 6 AM. If it is any later than 6 AM, I do not usually bother going to bed or if I do, I just lay on top of the comforter with a throw rather than ‘get into bed’. I wake up every few hours wherever I slumber. Always. Sometimes, depending on whether my neck is not doing well or if I am getting a headache, I have to come back to the couch and try to finish sleeping the rest of the night in a sitting up position. I never sleep straight through the night laying in a bed. I am going to repeat that. I *never* sleep in a bed for a full night, go to bed, lay down, sleep for several uninterrupted hours and awaken in the morning with maybe one bathroom wake up in the night. Unless I am at the point where I have hit the wall with complete and utter physical exhaustion, going to bed and sleeping the night through does not and has not existed in my world for many, many years. Now, of course I have a pesky recurring nightmare that wakes me; heart racing, adrenaline pumping and very glad to ‘know it was all just a bad dream’. I need to call the “Dream/Nightmare Busters” I reckon. Nonetheless, unstable sleep patterns marked by bouts of insomnia are the rule and not the exception (I am typing this at 5:07 AM and have been awake since 2 AM) . This latest ‘addition’ of my recurring nightmare (most likely due to some repressed memories I am now, well, remembering from my childhood) are making getting quality sleep even worse! I won’t elaborate on this other than to say it just adds insult to injury….. I have a tough enough time attacking the sleeping monsters. Now with this recurring nightmare, it just adds one more obstacle to getting some good zzzzzz’s.
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: WE ARE ALSO MORE PRONE TO DEPRESSION AND ANXIETY WHICH INCLUDES EXTREMELY ESCALATED SUICIDE RATES:
I, along with most of my sisters and brothers in this walk known as fibromyalgia, suffer from depression and some of us also suffer anxiety. If you hurt every moment of every day, did not sleep for more than two hours at a stretch, had a stomach that was either upset, cramping or causing some sort of intestinal ‘issue’ aka IBS (meaning you could not be far from your bathroom) and if your senses were totally overloaded meaning everything from light , smells, sound, tactile, etc were turned up to the top, super max ‘volume’……and to top it all off you were labeled as ‘having an invisible illness’ or being ‘negative’ because you choose to inform and raise awareness, I can guarantee, you would be depressed too. I have not even touched on how the serotonin in brain and how that relates to people with fibro…..at least in most people with fibro (because thinking on it is shifting to it being a neurological based condition rather than in the muscles themselves) so that means the serotonin is likely off kilter. If you add all the sensory overload, you also have a greenhouse for anxiety. Most people I know who have advanced fibro have both depression and anxiety. I don’t think it needs further explaining. All the same, it does bear mentioning with the stigma we already have with this condition, having depression and / or anxiety added just makes it all the more bleak. One study I looked at, on “Reuters” cited, “Danish researchers looking at death rates in women diagnosed with this chronic pain condition found that the risk of death from suicide was ten times higher than in the general population.”
- http://www.reuters.com/article/2010/07/16/us-fibromyalgia-suicide-idUSTRE66F3JJ20100716 Another study in “Phoenix Rising” http://phoenixrising.me/archives/12027 cited suicide rates as being eight times higher. Though I know I cited this in my last blog, this is sad but while there are a lot of ‘studies’ as in college research papers and fellow bloggers, there are not a lot of real hard core studies like the Danish study and Phoenix Rising. 🙁 We need more studies! People are dying BECAUSE of this…. maybe not FROM IT but they are DYING OF IT in a round about way! WAKE UP! BE AWARE! And while flattered to have found my own blog hit number 2 in the google search (looking for suicide rates), it is sad that more people are not A*W*A*R*E enough that FIBRO patients are THREE TIMES more LIKELY to COMMIT SUICIDE Than the general population!!!!!!! (*thirdage.com).
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: BRAINFOG:
Imagine going about your day. Imagine going to work, cleaning your house, tending to laundry, running errands, cooking dinner and even partaking in things you enjoy…. hobbies, music, etc…. only everything you do is through a dense, soupy fog. Every thought you think is muddled. You cannot find the words… though you consider yourself the luckiest woman alive because you have a husband who understands this so well and can fill in a word for you when you need it on a dime! Imagine everything you do…. from the smallest, most minute task being a challenge. Welcome to the life of BRAINFOG/ FIBROFOG!
Now I told you I was collecting theories here for a later post so (theory check) in place for later. First and foremost, NO, WE ARE NOT OVER MEDICATED! I want to nip that one first off the bat. I know a lot of people love to ‘think that’ but sorry to spoil your theory… it just is not the case. In fact my fog is worse than it has ever been and I am less medicated now than I have ever been. In any case, my Dad was the Post It king! He had post-its everywhere and it worked for him! For true ‘absent minded’ people like my own husband…. things like post-its and other reminders are great! For true brain/fibro fog, it is a totally different world! I can tell you birthdays of three of my closest friends in school….. May 20th and April 5th for two grammar school friends and November 19th for my best friend in High School. My step brother is a Halloween baby and my step sister checking in a few years later and a week or so shy on October 23rd, I believe or very close. And no, I did not go look it up on their Facebook accounts. In fact three out of five of those people do not even have Facebook and / or I have lost track of them. My long term memory is great! Fabulous! Finding a word I need for my next spoken sentence….. finding what I need when I walk in the room! Reading! Oh do not even get me started on reading! I am desperately trying to get back this one thing fibro has taken from me! Fibromyalgia has robbed me blind! It has taken so much from me! I can read online until the cows come home and plow out 3 blogs with new posts every ten days. However, sitting down and opening a…… book…….I do not know what it is about it. I read five, maybe ten pages top and I am asleep or get distracted or…. or…. or…. or________.? Anything, really. I have already typed over 2,300 words for this blog post and I am about 2/3 done. I have hundreds of more words blazing to fire out of these fingers. All the same, you sit me with a gorgeous, wonderful book and …. insert that cheesy Clint Eastwood “Spaghetti Western” music and the book and me having a stand-off at high noon!If fibrofog could just give me reading back, I think I could live with having to have Paul fill in every 5th word to running interference when even the smallest things don’t go right. A perfect example is the Friday night he came home from his 2nd job and found me sound asleep with my dinner, uneaten, on my lap. I was sitting straight up on the couch and my dinner was right there, cold and uneaten. You know when people say, “Just push through it!” Well see, that is what happens to me when I ‘push through it’. I ‘pushed’ too hard and by the grace of God the pot of Mushroom Stroganoff did not burn up! That is why I cannot push through it! I literally collapse in exhaustion. But see, I am not ‘you’ or ‘you’ or ‘him’ or ‘her’ and this is what people need to be aware of!So fibrofog / brainfog is very frustrating and time consuming. I would estimate I spend a good 2 hours a day just over compensating for the obstacles that brain fog throw at me. In spite of the ‘fog’, I do what I can to maintain and do the things I love. Though I cannot work anymore, I try to remain active in my hobbies. I am trying to find a way to get back to the 70+ books I want to read and I am a very stubborn person so I am sure I will find a way! I am also intent on making people aware about this monster aka as Fibromyalgia and Chronic Fatigue Syndrome.
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: WHEN WE GET AN EVERYDAY VIRUS IT ATTACKS US TWICE AS HARD AND TWICE AS LONG:
Any cold, flu bug, any little bug that is going around…… if someone with (especially progressed) fibromyalgia. I know people think I am paranoid about ‘germs’ but if they knew…. oh if they knew. My last ‘ordeal’ was front and center of my Facebook in tandem with a blog post as I was having some ‘all-nighters’ due to not being able to sleep because of being so uncomfortable from the cold/flu virus that set in with my husband as a ‘mild, one-day cold’. Mild cold for him = 8 days of utter misery for me. On top of it, I had an abscessed tooth which actually sent me to the Emergency Room one evening.
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: ABOUT FLARES Probably the worst of the worst thing about having fibromyalgia is when you ‘flare’. All a flare really is is what you already have; AMPLIFIED!!!!!!!! Your body is saying , “Hey there! You over did it!” In any event a flare simply means; we with fibromyalgia pushed ourselves too hard. We over did it. We just plain should not have done whatever it is we did to the extent that we did it…. or at the very least we did do what we knowing good and well we would, well, flare. Sometimes we make that choice…. because it means we have gotten out and LIVED. Going out once or twice a month for three to four hours (after careful, calculated planning and a lot of resting…. believe me, because when I know I have plans, I do rest and take other measures… no errands or appointments the day before, only THAT activity that day, etc)…. anyway, resuming…. when we go out ONCE for three or four hours, and then flare for a week, it does NOT mean we can work 8 hours a day, 7 days a week. Think about it. We would be in the hospital with exhaustion in a matter of days. When I flare, I usually walk hunched over like a ninety year old woman for the first 1/2 hour of the day. Every inch of my body hurts…. worse than just normal fibro pain; intense throbbing pain. My intestines are in fits and I cannot go far from home because I need to be near my ‘facilities’. My last flare had me in an IBS flare for eight days and feeling like “Cousin Guido” took the brass knuckles and gut punched me a few times. My head pounds. I generally ‘crash and burn’ (the night Paul found me sitting upright, sleeping sound with my uneaten dinner on my lap is the perfect example). My fingers ache…..I mean ache to the deepest depth of the bone! My arms ache and throb. I swear, my hair hurts! I get hoarse. You can always tell I am flaring if I am hoarse! This has caused me more grief in trying to plan calls to people…. especially my Uncle David in California!…. because I literally have no voice! I have called Uncle David and literally had my voice disappear over the coarse of the phone call! So who says this is ‘all in my head’…. how do you fake that one!? My muscles knot up. You can physically see them…. how do you ‘fake’ muscle knots? Paul is amazing. He just rubs and rubs and rubs them until his fingers are sore. When his fingers get sore, we have a little plastic three prong massage device he uses to apply pressure to the knotted area.
A lot of people assume ‘we’ are over-medicated at the time of a flare when usually just the opposite is true. I tend to back off my meds as much as possible when I know I am going to go somewhere that requires a little extra ‘physically’, hence, setting me up even more for the dreaded, flare. Assumptions are just as bad as any illness.
- I WOULD CHOOSE TO MAKE PEOPLE AWARE: ABOUT THE JUDGMENT AND STIGMA WE CARRY EVERYDAY AND EVERYWHERE WE GO.
Having fibromyalgia is so much more than just hurting, chronic headaches, brainfog and depression with anxiety, etc. As if all of that were not enough, we are the “Lepers” of current day! We are the most judged illness and the only illness I know where an actual Facebook page *was* (I say was because we got two… not just one but two name changes for this ignorant troll deeming himself a ‘hypnotherapist’). It took a lot of us sending in numerous reports on a daily basis. I have nearly 400 Facebook friends and I would say nearly 1/3 of those have pain issues! Yet trying to get this page reported was like fighting a lone war (well not true there were over 100 of us ). This man was just mean. Yes! That is sure the way to get my attention! Say my illness is all ‘in my head’ and that I am a ‘whiner’. Good job….. not! No, he just proceeded to piss me off and in the process make me for fervent in my quest with Facebook that if a page existed that said, “Stop the whining, diabetes is all in your head!” or “Stop the whining, cancer is all in your head!” that those pages would be yanked in a nano second. However, Facebook *finally* saw it for what it was, yanked it, the guy had to change it twice and I won’t give him credit, so I will *not* be saying what it is called, but it is not demeaning, though if he were the *only* health care ‘provider’ on earth, I would go without because anyone that is treating someone and they treat their condition in such a disrespectful manner is not ethical in any way, shape or form. He is just one example, sadly there are thousands more like him! People that think we are ‘lazy’, ‘over-medicated’ , ‘whiners’ who just ‘don’t push through it’ and need to ‘tough it out’. OK, well, you can pay my next round of hospital bills when I ‘push through it’ and collapse. I am busy trying to figure out how to pay the co pays for the over $150K I am still trying to pay off with the emergency surgery and various tests (CT, MRI’s, x rays, etc). I do NOT want pity! I just want fairness and recognition in my illness. I want people to know my pain, shattering fatigue, flares, IBS and other gut issues, headaches, brainfog, sensory overload, etc. are real and are absolutely soul-crushing! People are taking their own lives… in women up to 10 times over the average rate! If that is not real, I do not know what is! The stigma associated with this must stop! It stops here and it stops now! So me and my bullhorn would say all of that and probably a whole lot more. Albeit, if I had the world’s attention….. knowing how people’s attention spans work….. I would want to get in the important things. Now what can people do, really? One thing hit me the other day, this being graduation season. I was reading about Mayim Bialik (formerly “Blossom” now known as Amy Farrah Fowler on “The Big Bang Theory”, mine and Paul’s favorite comedy… absolutely inspired!). In real life, like her character, she has a PHD in neuroscience. Her dissertation was an investigation of hypothalamic activity in patients with Prader-Willi syndrome. Now what does that have to do with fibro? Nothing. However, dissertation did get my wheels a turning! Why aren’t college kids all over fibromyalgia? It is moving from the school of that that it is a muscle issue (look for a later blog post on this) to a neurological disorder! I searched and found that companies are willing to write a dissertation for you if you pay them. What? I thought the point of the sacred dissertation was to show them “what you’ve got!” Why would you pay someone to write a dissertation for you! I also found a few…. that you could pay to view. Why would I pay $25 to view something containing information I can get on Google for free? I did find one from 2007… and I do not say this to be mean, but I could have written it! Seriously, I thought, “This is the sacred dissertation” ? It was adequate, but it just looked like a ‘term paper’ as we called them back when I was going to college; back when dinosaurs roamed the earth and we walked a mile to school in the 100 degree heat, barefooted. It was also lacked passion, in my opinion. One other thing…. it cited a study: with ten women. The urine of ten women. Really? Ten women? The writer is going to do a study using ten women? Real, true and tried studies involve hundreds of people. As I have said time and time again, while women are the highest percentage of fibromyalgia patients, men, teens and children are not immune. Nonetheless, even if she was choosing to just use women as a control group, no good study can come of just ten women. Then to further add she claims depression as the underlying factor. I am insulted. I propose …. no I plead! We need studies! We need college students to embark on true, from-the-heart dissertations. I would love to Google search in two to three years and find pages and pages of wonderful, informative and well thought out dissertations. So I make a plea to parents of kids embarking on a career in medicine, psychology, physical therapy or anything even remotely related: I challenge you or your rising college student to do their dissertation on fibromyalgia…. in any manner they choose to word or present it. It is with continued studies and awareness that then and only then will a CURE finally be found! And that is the golden ticket all of us with fibro wish for on our wishing star each and every night!May 12th is not just Mothers Day and though Mothers Day is very important (I am a Mom, and I know all too well how precious any contact…. a call, a text….. anything is cherished on that day), it is also a day for us; those suffering from this life-sucking parasite known as Fibromyalgia/ Chronic Fatigue Immune Deficiency Syndrome. Won’t you please take a few moments in the next few days to become enlightened to our lives, or lack thereof. We live life on the sidelines for the most part, plucking bits of happiness where we can find it. Our isolation is compounded when we feel left out, labeled as ‘negative’ (when we just need to vent)…. think of a pressure cooker or boiler needing that valve to release some of that pressure so it does not explode. We need to be the ones to say what we ‘can and cannot do’. Please do not say, ‘Oh, well, you should not be babysitting/ going there/ doing that, etc because of your fibro’. We know what we are capable of and we are our best guides for what is best for us. I feel so alone and isolated more than anyone would know. So give it up and be aware! Take a stand and become informed! You never know when someone you love or worse could end up with a chronic pain disorder. Happy Mothers Day to Moms and to my fellow travelers down this long, grueling and lonely road, Happy Fibromyalgia Awareness Day, 2013! Godspeed to each and everyone of you! I now implore you; BEG YOU to watch this short ( like 5 minute video), all of it, please. If you do nothing else for me or anyone in your life you may know now or sometime in the future that suffers from Fibromyalgia and/ or Chronic Fatigue Immune Deficiency Syndrome (I suffer from both, to be technical here, something I am not sure I have ever clarified). The singer is quite ‘pitchy’, but it does not matter for this song had me crying within two minutes flat. I don’t mean just a few tears, I mean that deep down sobbing kind of crying that comes from the gut. My nose was running and my face was as wet as if I was in the shower, but I was motionless. My feelings, thoughts, words were captured by someone else! No, this singer isn’t going to be signed on for the next contract at MGM or RCA, but what this song did for me was more powerful than anything Beyonce , Pink and Adele combined could do! Please watch, you will see why! Though the video was made for Fibromyalgia Awareness Day, 2010, it does not matter. Little to nothing has changed since then. Watch and be part of what we live for a few minutes:
Here is one more I found later….. it is also SO worth the watch! http://www.youtube.com/watch?v=StXhLLiC63k
Until next time, K.