March 2015
Volume 4: Issue 1
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This Issue What I Have to Say The Mask: I’m Fine Training the Brain to Beat the Pain The Unspoken Truth: Fibromyalgia and Sex A Normal Life Advocate and Educate In Search of That Special Mechanic Feeling Alone And He Said
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FibroModem Heather Tolley Norman Doidge Julie Ryan
14 Simone Moszkowicz 15 Amy Mulholland 18 Anita Wheatley 20 21
Shelley Joshua David
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email: fibromodem@fibromodem.com blog: fibromodem.com Facebook page: www.facebook.com/FMawareness Twitter: @Fibromodem Shop at: cafepress.com/fibromodem Editor: Simone Moszkowicz FibroModem welcomes your feedback, comments and any appropriate contributions to further editions. To contact FibroModem, please use the email address: fibromodem@fibromodem.com © Copyright FibroModem 2012-2015 The views & opinions expressed are not necessarily those endorsed by FibroModem . Advertisers To advertise a product here, please contact FibroModem at admin@fibromodem.com.
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I’ve been sad. I’ve been very sad. I was so sad that I didn’t want to infect you all with my sadness so I asked Melissa Swanson to edit this magazine. I was sad and cynical and bitter. I know you know exactly what I’m talking about: the lock-yourself-away, pray-for-neverending-sleep, wonder-why-you-bother-to-wake-up type sadness or, when you try to think positively and tell yourself that there are always people who are worse off, you wonder if you are THE worse off (some-one has to be, right?) Anyway, I think I have dragged myself out of it BUT, although (logically) I know that most, if not all, of us suffer from these feelings; at the time it felt like no-one could ever have felt the sadness that I was feeling. So my way of reminding all of us that we are not alone is to choose a theme for this issue that resonates so completely with us: Invisible Tears. And after reading the articles that our wonderful writers have contributed for this theme, I must say that this was an inspired decision. You will not find all of these articles cheerful and positive – some are downright gloomy – but you will find yourself thinking about the authors’ words and thoughts. Remember if you have any views you’d like to share about the magazine, please send your opinions to contributions@fibromodem.com I really hope you enjoy reading this issue as much as I have enjoyed putting it together.
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Heather Tolley is an artist and photographer residing in the beautiful valley of East Tennessee. After receiving a dual diagnosis of ME/CFS and Fibromyalgia and being laid-off from her career, she returned to something always beloved – photography. Building a collection and portfolio, she began ‘Finding Focus’ and opened a storefront at online retailer Etsy.com while sharing the trials of maintaining normalcy in life on her blog. With the support of her loving husband, she works to merge components of multimedia style and photographic skill, and is currently in the process of creating a collection specifically related to living with chronic illness and what it means to be a “Spoonie”.
Living with chronic illness is one of the most difficult things I have faced in my life. Please understand – I am in better shape than a lot of people out there and for that my gratitude knows no bounds. There are days, sometimes several in a row, my life resembles that of someone who is completely normal and pain-free. At other times, however, I’m not as lucky. As many dealing with the same issues, the discovery that my body had gone haywire was a shock and to say it has been an adjustment would be a huge understatement! I’ve lived in this body my whole life and gotten to know its rhythms and functions… what it’s capable of and what limitations it faces. Going from a healthy individual to someone living with Myalgic Encephalomyelitis (more commonly, and unfortunately, referred to as Chronic Fatigue Syndrome) and Fibromyalgia has been a challenging journey, wrought with frustration and anger, confusion and sadness. A life full of light and energy has been reduced to days, months and years of life filled with caution and conservation. Each action must be weighed and adapted now, and dreams that were once attainable have been put on hiatus or abandoned completely. No one tells you about the added costs of invisible illness, but the price is much higher than just the medical bills and lost wages. The past year brought a great deal of darkness… days I felt unable to reach the light no matter how brightly it shone. There are a lot of days like that. Although I don’t mean to resort to acting the hermit, it happens at times. Those who genuinely know me are aware of the adversities I face and (hopefully) understand any given day can bring physical challenges that make it easier to remain in one place trying to recover or conserve energy as needed. While that is the single biggest reason I fall off the grid for days at a time, it isn’t the only hardship that prevents me from being a social butterfly, unfortunately, and lately I’m more hermit than human. Chronic illness can help a person master a kind of deception – what I think of as being able to wear the mask of “I’m fine”. Ask anyone you know that endures continual pain or physical ailment and they will probably tell you that dealing with those circumstances helped them, at least at some point, become more adept at “I’m fine”. When I have to go
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somewhere on a less than healthy day I usually try to act livelier than I really feel. Admittedly, it is a risk… The energy necessary to pull off “I’m fine” will often significantly reduce the duration of my outing, but it keeps uncomfortable questions at bay. ME/CFS and Fibromyalgia have taught me how to keep a lot of things inside – mask the dreams these disorders have forced me to postpone or relinquish. The more recent weight on my shoulders and in my heart is not as easily disguised, to my chagrin, and necessitates that I stay away from people in any capacity or be willing to deal with uncomfortable questions firsthand. It doesn’t allow for masks and hides from no one. The face it wears is evident no matter how much makeup applied, how expertly crafted the smile put on, or how clever the tactical diversions I employ. It is the face of a woman who has not been able to have children of her own. The face of a woman who grew up in a large family, dreamed of creating that with her husband, and wakes up every morning alone. One who goes to bed without having kissed tiny hands and feet or listened, exhausted, for plaintive cries in the middle of the darkest night. I am that woman, this is the reality I have come face to face with this year, and the revelation has broken something within me that I fear will never be whole again. There is no way to tell people you can’t leave the house because you cry each day. Heck – my family and friends know I’m an incredibly sensitive soul that cries about many things anyway, so normal ‘sensitivity’ tears would hardly be a reason to stay home. It’s just who I am. My heart is so tender that each wedding I work gets me choked up just standing behind a camera doing my job… even though I didn’t meet the people before that day! More sensitive than just about any person I know, it’s not unusual for me to get teary over things that others dismiss without a second glance. Yet those tears, no matter how embarrassing, I typically don’t mind sharing with the public eye. It may not always be socially acceptable, and I definitely receive strange looks sometimes, but knowing the sensitivity is there, unavoidable, also lends me a certain kind of strength. Will I cry about things no one will understand? Yes, but it’s happened my whole life, is even expected under certain circumstances, so I just accept it and go on. The recurring nature of it has built its own layer of callus as a type of self-preservation. The crying I’ve been doing lately is different. Not for sharing and not due to sensitivity, it’s the kind of crying that can only occur alone, where no one can hear the anguishing, choking sobs that happen at the drop of a hat watching a diaper commercial on television or looking at someone’s family pictures on social media. Alone… where no one else has to see the ugliness of it. And it IS ugly. This isn’t a lovely, lone tear rolling down my cheek calling to mind comparisons to Demi Moore à la Ghost. This kind of tears requires solitude. The type only attainable while heartbroken in my pajamas at noon thrashing and wailing with no one is awkwardly waiting out the emotional display to hear “I’m fine”… Because I’m not. Chronic illness has taught me to mask much of the heartache over what it has stolen from me but this refuses to be buried and most certainly is not fine. So please understand that I didn’t want to miss your baby shower. Please know I really did want to come see you in the hospital after you welcomed a beautiful bundle of joy to the world. My heart is full of happiness for you and your family! I mean that with all
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sincerity. However, please understand that simultaneously, my heart is breaking. That heartbreak can, at times, prevent me from sharing these moments with you while maintaining any sort of grace or showing courtesy. There is a hole in my life that nothing else will ever be able to fill. Not the all-encompassing love I feel for my husband, not the joy I receive for working hard for an achievement, not material possession or adventurous experience, not even the ecstatic way I feel when my body allows me to have a semi-normal day. Some life experiences can be substituted for others, but this is an exchange rate that will never balance in my favor. In my heart I hope you understand that for each time your bladder felt ready to burst or your pants wouldn’t fit, I have placed my hand upon my tummy and tried to accept that it will never feel a baby’s kick… For every feeding when you dragged yourself awake, I was also probably awake, lying in the black of night listening to the silence of my house. Sure, I’ll never have to worry about childproofing and vaccines and choosing the best childcare, but I will also never feel the joy of having a small child cling to my leg and call me mommy. Never feel soft, chubby hands pat my face with utter devotion, never kiss boo-boos or sing “ABC’s”, never rejoice and cry and worry for a child of my own. I will never hear a toddler’s laughter or see a teenager’s angst between these walls, and this year has been about coming to terms with that. Sometimes I have to think, if being a parent is the hardest job in the world… being a mother without a child must rank right up there. So, if I have seemed distant or missed an important milestone in your life, please be patient with me. I’m working on a new face that is quite a bit more difficult than the last and I don’t have a template to go from. Nothing I have experienced has prepared me to wear something like this and nothing in my closet seems to match. It’s transparent, you see, and makes no apologies for things that cannot be changed and hurts that cannot be hidden. This mask is merely my face as I learn to live with this new view for the future. And although I’m not fine right now, I hope someday I will be….
The scars you don’t see are the hardest to heal 8
adapted from an article in The Australian, January 31, 2015 by Norman Doidge
THE BRAIN TRAINING TO BEAT THE PAIN Michael Moskowitz (no relation) is a psychiatrist turned pain specialist who has often been forced to use himself as a guinea pig. Moskowitz spends most of his time immersed in the chronic pain of others. Their agony is unknown to most people, in part because they are often so drained by their pain that they stop wasting what little energy they have to express distress to those who can’t help them. Chronic pain may be invisible on a patient’s face, or it can give its victim a drawn, ghostly presence, because it sucks the life out of a person. Moskowitz and another psychiatrist turned pain specialist, Robert Hines, set up a pain clinic in Sausalito, California, which treats patients with “intractable pain”: those who have tried all other treatments, including all known drugs, “nerve blocks” (regular anaesthetic injections) and acupuncture. “We are the end of the line,” Moskowitz says. “We are where people come to die with their pain.” Moskowitz came to pain medicine after working for years as a psychiatrist. He has all the professional and scholarly credentials: he was on the examination council for the American Board of Pain Medicine; he is a former chairman of the education committee of the American Academy of Pain Medicine; and he has an advanced psychiatric fellowship in psychosomatic medicine. But Moskowitz became a world leader in the use of neuroplasticity – using the brain’s own structure and functioning in response to activity and mental experience – for treating pain only after making some discoveries while treating himself. After a water-skiing accident, Moskowitz often experienced an 8/10 pain level (10 being dropped into boiling oil), on many days making it impossible for him to work. It soon dominated his life as no pain ever had. Morphine and other heavy-duty painkillers, and all the known treatments – physical therapy, traction, massage, self-hypnosis, heat, ice, rest, anti-inflammatory drugs – barely touched it. That pain haunted and tormented him for 13 years, becoming more severe as time passed.
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When he hit rock bottom, he began researching the discovery that the brain was neuroplastic. The idea that chronic pain was caused by a neuroplastic event of the brain had been proposed by the German physiologist Manfred Zimmermann in 1978, but as neuroplasticity would remain generally unaccepted for another 25 years, Zimmermann’s idea was hardly known, and its applications to treat pain unexplored. Acute pain alerts us to bodily injury or disease by sending a signal to the brain, saying: “This is where you are hurt – attend to it.” But sometimes an injury affects both our bodily tissues and the neurons in our pain system, including those in the brain and spinal cord, resulting in neuropathic pain. Neuropathic pain occurs because of the behaviour of neurons that make up our “brain maps” for pain. The external areas of our body are represented in our brain, in specific processing areas, called brain maps. Touch a part of the body’s surface and a specific part of the brain map, devoted to that spot, will start to fire. When the neurons in our pain maps get damaged, they fire incessant false alarms, making us believe the problem is in our body when it is mostly in our brain. Long after the body has healed, the pain system is still firing. The acute pain has developed an afterlife: it becomes chronic pain. Moskowitz defines chronic pain as “learnt pain”. It not only indicates illness; it is itself an illness. The body’s alarm system is stuck in the “on” position because the person has been unable to remedy the cause of an acute pain and the central nervous system has become damaged. “Once chronicity sets in, the pain is much more difficult to treat.” Wishing to take charge of his own pain, in 2007 Moskowitz read 15,000 pages of neuroscience (I had enough trouble reading this article – how are you doing?). He wanted to better understand the laws of neuroplastic change and put them into practice. He learnt that not only can one strengthen circuits between brain areas by getting these areas to fire at the same time, but that one can weaken connections by making sure areas don’t fire in synch. He also learnt that in our use-it-or-lose-it brain there is an ongoing competition for cortical real estate, because the activities the brain performs regularly take up more and more space in the brain by “stealing” resources from other areas. He drew three pictures of the brain that summarised what he had learnt. The first was a picture of the brain in acute pain, with 16 areas showing activity. The second was of the brain in chronic pain, showing those same areas firing but expanded over a larger area of the brain, and the third picture was of the brain when it is not registering pain at all. As he analysed the areas that fire in chronic pain, he observed that many of those areas also process thoughts, sensations, images, memories, movements, emotions and beliefs when they are not processing pain. That observation explained why, when we are in pain, we can’t concentrate or think well; why we have sensory problems and often can’t tolerate certain sounds or light; why we can’t move more gracefully; and why we can’t control our emotions very well, become irritable and have
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emotional outbursts. The areas that regulate these activities have been hijacked to process the pain signal. Moskowitz’s inspiration was simple: what if he could use competitive plasticity in his favour? What if, when his pain started – instead of allowing those areas to be pirated and “taken over” by pain processing – he “took them back” to their original main activities, by forcing himself to perform those activities, no matter how intense the pain was? What if, when he was in pain, he could try to override the natural tendency to retreat, lie down, rest, stop thinking and nurse himself? Moskowitz decided the brain needed a counter stimulation. He would force those brain areas to process anything but pain, to weaken his chronic pain circuits. Years as a pain medicine specialist had fixed in his mind the key brain areas he was targeting. Each of them could process pain and do other mental functions, and he listed what each did other than process pain, so he would be prepared to do those things while he was in pain. Moskowitz knew that when a particular brain area is processing acute pain, only about five per cent of the neurons in that area are dedicated to processing pain. In chronic pain, the constant firing and wiring together of neurons lead to an increase, so that 15 to 25 per cent of the neurons in the area are now dedicated to pain processing. So about 10 to 20 per cent of neurons get pirated to process chronic pain! Those were what he would have to steal back. In April 2007 he put his theory into practice by using visual activity to overpower the pain. A huge part of the brain is devoted to visual processing, and it couldn’t hurt to have it on his side in this competition. He knew of two brain areas that process visual information and pain, the posterior cingulate (which helps us to visually imagine where things are in space) and the posterior parietal lobe (which processes visual input). Each time he got an attack of pain he immediately began visualising the very brain maps he had drawn, to remind himself that the brain can really change, so he’d stay motivated. First he would visualise his picture of the brain in chronic pain – and observed how much the map in chronic pain had expanded neuroplastically. Then he would imagine the areas of firing shrinking, so that they looked like the brain when there was no pain. “I had to be relentless – even more relentless than the pain signal itself,” he said. He greeted every twinge of pain with an image of his pain map shrinking, knowing that he was forcing his posterior cingulate and posterior parietal lobes to process a visual image. In the first three weeks he thought he noticed a very small decrease in pain and he doggedly continued to apply the technique, telling himself to “disconnect the network, shrink the map”. After a month he was getting the hang of it and applying the technique so conscientiously that he never let a pain spike occur without doing some visualisation or other mental activity to oppose it. It worked. By six weeks, the pain between his shoulders in his back and near his shoulder blades had completely disappeared, never to return. By four months, he was having his first totally pain-free periods throughout his neck. And within a year he was almost always pain-free, his average pain 0/10. Moskowitz started to share his discovery with his patients. His first “neuroplastic” patient was Jan Sandin, a former nurse in her 40s at Sequoia Hospital in Redwood City, California. An accident at work had left all five of her lumbar (lower back) discs damaged, and the bottom one slipped and pressed against a nerve root. Surgeons told her there was too
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much damage in her lower back to operate. After several brave attempts to return to work she was declared disabled. By the time she got to Moskowitz, she had been disabled with chronic pain for a decade. He introduced her to the idea of training herself using his neuroplastic technique. “He told me to look at the brain pictures seven times a day. But I sat in the massage chair and I looked at them all day long, because I had nothing else to do. I would visualise the pain centres firing, and then I thought about where my pain was coming from in my back. Then I would visualise how it went into the spine and then into my brain – but with no pain centres firing. In those first two weeks, I had moments when there was no pain… It wasn’t profound, because I felt, Oh, it’s not going to last. Then I thought, Oh, it’s back again – don’t get your hopes up. “By the third week I was starting to have a couple of minutes a day without chronic pain. By the end of the third week, the time without pain seemed to increase. But it happened for such a short period of time that, honestly, I never really thought it would go away. By the fourth week, the pain-free periods were up to 15 minutes to half an hour. I thought, this is going to go away.” And it did. Next, she started going off all her medications, terrified the pain would return, but it didn’t. “I wondered, Is it a placebo? But the pain still hasn’t come back. It has never come back.” Unlike medication or placebo, the neuroplastic technique allows patients to reduce its use over time, once their networks have rewired. The effects last after patients learn and practise the technique over hundreds of hours. “I don’t believe in pain management anymore,” says Moskowitz. “I believe in trying to cure persistent pain.” Once he made his discoveries, he slowly began to wean many patients from their long-term opioids. A key to success was to lower the dose very slowly, thereby giving the neuroplastic brain the time it needed to adapt to being without drugs, so the patient wouldn’t experience any “breakthrough pain”. Tapering slowly, down to 50 to 80 per cent of the original dose, could break the cycle of opioid-induced pain sensitivity. Many clinicians would, at that point, have focused the rest of their career on teaching visualisation, because so many patients responded to it. However not all did, and that left Moskowitz dissatisfied. Perhaps some needed approaches other than visualisation to compete with pain. He was helped by Marla Golden, an emergency physician who specialises in chronic pain. Golden also trained in osteopathy, a hands-on practice using touch, sound and vibration. Together, they have pioneered a true mind-brainbody approach to chronic pain in which patients receive simultaneous neuroplastic input from the mind and body to influence the brain. The Brain’s Way of Healing by Norman Doidge (Scribe, $35)
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Fibromyalgia and Sex There’s a dirty little secret about Fibromyalgia that those who are affected don’t like to talk about; we’d much rather pretend that we aren’t affected, that all is well. That dirty little secret is the way that Fibro affects our sex lives. It is funny how sex is one of those topics that we all assume everyone is on the same page about; if we aren’t having it we still assume everyone else is and we are the oddball. The truth is that few people are having sex nearly as often as the rest of think they are, but those of us with Fibro actually are having sex less than most people think we are.
Julie Ryan is a freelance writer and student. Julie was diagnosed with Fibromyalgia in 2010. Despite that and other chronic illnesses she is working towards her degree in Psychology, and hopes to graduate in December 2015. Through her blog she strives to both educate and inspire those living with chronic illnesses including Fibromyalgia, Endometriosis, Migraines, and thyroid disorders. You can find out more about Julie and check out her blog at Counting My Spoons
There are a few exceptions, those lucky couples who figure out the perfect way to enjoy sex without adding to the chronic pain of Fibromyalgia; therefore, finding that the endorphins created during sex actually reduce pain (even if just for a short time). For the majority of those suffering from Fibromyalgia that ideal position hasn’t been found yet. Instead, they find that even cuddling adds pressure on already painful joints and tender spots, and often sex creates pain in sensitive areas that can otherwise be avoided.
During the five years that I’ve suffered from Fibromyalgia our sex life has had as many ups and downs as a roller coaster (even if they’ve been small ups and downs). Early on I just hurt too much to even think about sex; sex was the last thing on my mind, even if that wasn’t the case for my husband. I felt guilty that he was not having his needs met in that way, but at the same time I knew there wasn’t really anything I could do about it without feeling worse. I believe at times that guilt and the knowledge of how my chronic pain was affecting my husband (not just related to sex but overall) added to the depression that I lived with. When I finally got the chronic pain of Fibromyalgia under control (thanks to some major diet and lifestyle changes) our sex life started to improve. Life was just starting to return to
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normal for us when something new happened, I began experiencing abdominal pains for no apparent reason. They plagued me at random but also during sex. Needless to say, feeling like you are being stabbed in the gut is not a huge turn-on. Other sex-related pain appeared as well and after many doctor visits and an exploratory laparoscopy I was diagnosed with Endometriosis. Two surgeries later all of the Endometriosis had been removed (as far as we knew) but the pain persisted. It wasn’t always there, but often enough that it I’m sure it added a bit of psychological terror to the idea of sex. I think that’s the hardest part about the pain related to sex that comes with Fibromyalgia and Endometriosis, the psychological aspect. The pain isn’t always there, but it appears with certain activities (like sex) often enough that it really affects you psychologically. You worry that if you have sex the pain will be there so you avoid sex to avoid the pain, even though there’s a good chance that the only feeling will be one of enjoyment. The problem is that we don’t know when the pain will come, and those who don’t live with this type of pain can’t really understand why we’d avoid something so pleasurable when there is no guarantee that it will hurt. It would be different, they think, if it hurt every time and knew it, but isn’t the pleasure of sex, and the emotional closeness it provides a relationship, worth the risk of “a little” pain. Perhaps if it was only a little pain that might be the case. We have all worked through a little pain when we knew the reward was worth the pain, unfortunately the pain associated with Fibromyalgia or Endometriosis (and definitely not both together) is NOT a little pain. It is a big pain, a large excruciating, agonizing pain that affects us not just physically, but mentally.
A Normal Life I remember when life was normal… When I wasn’t sick When I had a future so bright When I loved my job When I didn’t cry to sleep each night When I didn’t wake up to a handful of pills And go to sleep with another When I had friends who cared When I was still loved by my father When going out was fun When I chose who, when and where When my highs were high And I just remained there When I wasn’t trying to kill myself By drowning in this self-pity
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Amy is the owner/author of The Fibro Fog, as well as the correlating Facebook page. Her blog has been voted as one of the top 15 Fibromyalgia blogs of 2014 by Healthline, and has received this honor for 3 consecutive years. The blog has also been certified for medical accuracy by an M.D. through Healthline. She also was featured in articles by Dr. Sanjay Gupta in both January and February of 2014. Amy presents a motivational seminar full of tips and tricks for living with a chronic pain illness. For more information about the seminar or to book her for a public speaking engagement, please see her blog. Amy is a 43 year old single mom to four now-grown children, and suffers from Fibromyalgia along with several other chronic conditions. She's getting ready to undertake the task of writing a book about the daily trials of living with chronic pain and fatigue illnesses.
This quarter's theme, Invisible Tears, is one that conjures up a lot of emotion within me. Those of us who suffer with Fibromyalgia have to dry up so many invisible tears because of all of the DHAC's (the people who Don't Have A Clue) out there. People that aren’t in our "Fibro Club" just don't realize the kind of physical and mental pain we go through due to our illness. They can be staring us right in the face, and our tears are invisible to them because they just don't have a clue. Think back to when you were healthy...before you were diagnosed with Fibromyalgia...if someone said to you "I have Fibromyalgia" what would you really have thought? If someone said "I have a horrible headache. I have Fibromyalgia" what would you have thought? I'll be honest. What I would have thought is "Wow. Suck it up. Everyone has headaches. I just had one last night". I probably would've inserted an eye-roll too. Another thing that I would have thought is that Fibromyalgia is just something that doctors tell hypochondriacs that they have. Yep, I really just said that because that is what I thought about Fibro back in my early twenties. Why would I think that Fibro wasn't a real condition? A real illness? Because what little I'd heard spewed on TV, or read in a magazine said so. I didn't know any better. I wasn't educated on the subject. Therefore, a person could have been standing right in front of me consumed with the pain and agony of Fibromyalgia and yet their tears would have been invisible to me. Now unfortunately, I know first-hand how horrible and debilitating Fibromyalgia really is. When I was first diagnosed I left the rheumatologist's office in tears. I was mad, as in downright pissed, because he said I had Fibromyalgia. I knew something was really wrong with me. My pain and fatigue was real and not just something I'd made up in my head. I read through the pamphlet from the American Arthritis Association about Fibromyalgia while my husband drove. I thought to myself "Well, this organization seems to say that it really is an illness". I got home and hit Google like it was my best friend. I read articles and blogs and health
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forums and research journals. I read all of this stuff for weeks. For months. I still read it all. I educated myself on the condition. I cannot begin to stress enough the importance of education and advocacy. Generally speaking, people are not going to just sit down and truly educate themselves about an illness that they don't have. It's up to those of us that do have the illness, to educate the general public about it. If people do not understand what our illness entails, they aren't going to care about our illness. It takes people caring about it, to get donations for research to find a cure or a universal treatment plan that actually works for everyone. I find that a lot of us with Fibro are angry about the way the non-Fibro world thinks of our illness; of us. If someone doesn't know about something, how can we hold them accountable? That would be like holding a kindergartener accountable for not knowing how to do long division. It isn't their fault because they haven't been taught yet. Those of us with Fibro are the teachers. We have to teach society about our illness. The ball is in our court. It's up to us to educate every person that we possibly can about what it's like to live with Fibromyalgia. If we want people to start seeing our tears; if we don't want Fibromyalgia to be invisible anymore, we have to create awareness. We have to show people that our struggles are real. Every day millions of invisible tears are shed by the unfortunate members of the Fibro Club. Together, let's change that. Let's educate and advocate, until people can see our pain. Let's show everyone how real our illness is. Let's stand together, and show the world what Fibro truly looks like, tears and all. I absolutely love Dr. Seuss; I'm going to leave you with a very true quote:
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Anita Wheatley is a fellow Fibromyalgia sufferer. As a writer and blogger, sitting and typing on the computer for long periods of time is challenging; but Anita just released her first book Choice for Change: Reflecting More of Him and can attest to what a pain it was to write (literally!) The book is available at Amazon.com, Barnes and Noble, and Family Christian Stores.
The drops of water streaming down your face somehow validate your pain. They give people the right to come to your aid…to express comforting thoughts…to sympathize with your pain. But, what about your Invisible tears… The ones that water your heart The ones that tell you your pain is real The ones that tire from explaining to others Invisible tears… cannot be wiped away I remember the first day of my invisible tears as my tour of a variety of auto shop facilities began. The odometer ticked up the count from the endless journey of mechanical referrals. Everything was normal…or, so they said… they indicated I just needed to veer off the highway at the next rest stop. Obviously, they implied, my excessive career speeds were wearing down my engine. Cooling down my engine was their diagnosis. However, that was not an option for me. I was not about to come to a screeching halt. So, I pressed on. There were still so many scenic views to experience. A good friend of mine tried to map out directions for my unscheduled journey. Although I know she meant well, I was not about to let a “minor tune-up” cause me any delays. I was comfortable in my life navigating the familiar roads and never let anything inconvenience me. Yet, the more miles I logged, the more I was convinced that something wasn’t right. It became harder to get my motor running in the morning, negotiating sudden turns that presented themselves, and obviously, my speed was diminishing. My invisible tears convinced me that I needed the help of a diagnostic machine.
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Since I felt my mechanics had let me down thus far, I needed to continue my search to find that special one who could correctly diagnose my “auto”-immune system. If only the owner’s manual had been clear on this subject I would not have traveled so far in this disrepair. What about you? How many invisible tears have you shed on your road trips while searching for a correct diagnosis? You are not alone. There are many autos sitting on the side of the road broken down as they search for answers to their condition. Be encouraged. Nowadays, thankfully, we have access to “Triple A” (Auto “Amune” Analysis). After all Fibromyalgia is an autoimmune disease and was finally recognized in 1987 by the American Medical Association as “an emerging condition”.1 Realize your invisible tears are part of your internal warning system. Others around you are not in a position to sympathize because they cannot see “under your hood”. They may think you are fine, but you know differently. When you see the “tear drop” warning light come on, don’t ignore it. Get yourself serviced. You may not run like a brand new auto just driven off the showroom floor, but don’t let it define who you are or how others see you.
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Scope. http://scopeblog.stanford.edu/2013/08/13/fibromyalgia-living-with-a-controversialchronic-disease/
Shelley (aka Chronic Mom) lives in Texas with her husband and two children. She was diagnosed with fibromyalgia in 2011 and now spends her time trying to find humour in the sometimes ridiculous situations that she finds herself in as she battles illness and parenting at the same time.
As you wait silently you feel the biting cold of the metal chair permeating your body. You hear the footsteps of the doctor echo as she comes down the hall. It doesn’t take long to hear the words you expected but hoped you wouldn’t be forced to endure. There is nothing wrong, you are probably just depressed or trying to get attention. While the only words you hear in your mind are: you’re crazy. You shrink inside yourself, bow your head in shame and walk out of the room. You don’t know if you can take this anymore. Can you be strong enough or will you crumble? You feel like you’re on your own. You’re only human, you can only handle so much pain and disappointment. You’ve built this unbreakable wall between yourself and everyone else so that they don’t see that you’re actually falling apart. On the outside it looks like nothing has changed, but you’ve lost friends, had to quit your job, and you can’t find a doctor willing to listen. As the bad news piles up your wall is starting to crumble brick by brick. Your defenses are coming down and there is no one there to fill the breach. You walk down the street with a heavy heart. You are barely aware of the people around you as your struggle to keep the tears from falling. Everyone looks so happy and normal, is there anyone else out there that is carrying such a heavy burden? You feel as if the whole world is passing you by as you struggle with the weight of your afflictions. It’s as if a fog has crept in and slowly begun to blur your view of all others. You are on one path and everyone else is on another. The paths have diverged and the others keep getting farther and farther from your view. You are breaking into a thousand pieces. You feel alone. You stumble home feeling like your body is completely drained of life. How can you be expected to go on like this? Your wall of defenses has collapsed and you can no longer hold the tears inside. You lay your head on the table and sob; it seems like there is no reason to go on. You have lost everything and everyone that was important. No one else can feel your pain. You feel broken and feel so alone. As your tears begin to dry you feel something grow inside you and you find a small spark of strength within. There is no going back to your old life; you know you can either give up or you can keep on fighting, and you choose to fight and to win. You know there will be days when you feel utterly alone, and you know you won’t be able to control what happens to you, but you can control your reaction. You realize that you are not the only person out there suffering; there are people who have been there who will understand you. You know that you will find them. There is hope and you are not alone.
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For this theme, I thought I would write about what damage we as men can suffer from this disease... ones we may tend to hide. As damage that may manifest itself in other ways. If the disease has disabled us, we have seen the damage done to our checking accounts. It’s the guilt we carry, feeling that we have become a burden, which we try to hide. This feeling of being a burden is enough to crush any man. Coming to terms with a new reality, one in which we are no longer considered “valuable,” is a monumental task. We are depressed about the past, and anxious about the future. We need to find “the present,” and try to live in the goodness we find in each moment. Talk Therapy can help you do that: learning different patterns of behavior to exhibit and working to reframe your thinking in a more positive light. This disease has the power to destroy you, if you let it. You probably take medication for certain symptoms, think of talk therapy as medication for your daily life. There are those of us who are still able to work, but it’s becoming tougher, who have the added pressure of knowing that they are being depended upon. Anxiety about the future will eat you up if you let it. All the “what ifs”, and hypothetical scenarios we create in our head do us no good. Here, if medication is necessary, by all means use it. It would also be good to get some professional help, to learn how to better deal with anxiety. Meds can do wonders for us, but understanding cause and effect, how it is operating in our brains can help us to make changes so the daily load doesn’t feel quite so heavy. I don’t want to undermine whatever method of help a person finds to help them successfully deal with their problems. However, I think that understanding what is going on in your brain before, up to, and during those moments where we begin to become anxious will helps us understand how we can help ourselves become less anxious. Anxiety may not manifest itself directly with anxiety attacks. Some of our everyday actions may seem to take a turn. Are we tending to fixate on something more than usual? Are we devoting more or less time to things we didn’t previously? Is perfectionism or social anxiety becoming an issue? It’s common for OCD to manifest itself at a time like this. More studies are becoming available that link an early physical or emotionally traumatic event with Fibromyalgia. PTSD has no timetable or demographic. What reaches the definition of “trauma” is different for all of us. Sometimes there is an expectation attached to PTSD - that your “trauma” must be outrageous if you claim to have it. It can leave those
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dealing with more common events, such as a divorce, feeling as if they haven’t “earned” a PTSD diagnosis. That’s the wrong way to look at it. Mention it to your doctors if you think that this may be a contributing factor.
Who doesn’t need more SPOONS!
Isolating yourself is often a way we choose to handle the changes we are going through. Men tend to isolate in order to think. Be careful we are not isolating because we think no one understands. No matter what the pressures you’re feeling, others like you have dealt with the same situation. Don’t isolate yourself - seek others like yourself to speak with. People to whom you can vent, who truly understand what you are going through. They can be found all over the internet on all kinds of forums. Find a forum where you fit in and become part of a community. It’s helpful to have a place to go where you are not alone…especially among people suffering the same ailments as you. Invisible tears? Men have a lot of them. It’s ok to cry about them once in a while.
Are you a man with Fibro? Do you want to talk to other men with Fibro – about how they cope every day, what helps them, etc? Join the closed, private group For Fibro Men 23
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