June 2014
Volume 2: Issue 3
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What I have to say And He Said - Josh David Relaxing with Watsu - Julie Ryan Introducing...Haullie Volker May 12 Blog Bomb Observations on M.E - Leigh MEaning of life is.... - Alexi Dinks Art in Illness - Erin Fromkes My ME Story - Elaine Stammers Capturing the Essence - Sarah Caddick Complete List of May 12 Blog Bomb links
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Melissa Swanson lives with her husband, 3 cats and her border collie named “Ewe Bet I Can”. email: fibromodem@fibromodem.com blog: fibromodem.com
In addition to Fibromyalgia she has 13 of it's evil sidekicks as she calls them.
Facebook page: www.facebook.com/FMawareness
She works full time, is active with her teenage daughters sports teams and is enjoying getting back into the dog world. She enjoys Aqua Zumba and Water Gym classes, her online support group, her facebook page and writing her blog.
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 2012-2014 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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Melissa runs a Facebook page called Fibro Warriors ~ Living Life and, if you enjoy her writing, please visit her blog: This is My Life ~ Surviving Fibromyalgia
Joshua David is a 34-year-old Boston resident and copywriter who was diagnosed with FMS and CFS at age 26. Joshua enjoys poetry, pottery and dog training. He can be found at Squidoo, his Wordpress website, Facebook, Twitter, and the Men with Fibro Community. With a beautiful wife whom he adores, a dog and cat, Joshua finds his hands, heart and days, full and satisfying. Joshua will now be writing regularly for us, from a man’s point of view.
What I have to say This issue was supposed to be themed Feeling Groovy. It was supposed to give you (and me) ideas about how to make ourselves feel better. Despite confirmation from nine regular contributors, I only received 2 articles for this issue. Hmmm...that’s not going to fill a magazine. So the remainder of the issue has been filled with International Awareness Day activity reporting. For the first time, I felt that I HAD to put this issue together – not that I wanted to do it. The only reason this issue is out is because I had previously said it would. This particular issue was one of the hardest projects I have had to do: it made me feel isolated, useless and like all the activities I do are a waste of time. I felt that, at every turn, obstacles were being placed in my way: problems with the cover, the articles, the contributors, the replacement articles; and, of course, as with all Fibromyalgia sufferers, I had my own problems. I began all the different FM ‘things’ (see? I can’t even be bothered linking them here anymore!) that I do to develop a community, a place where we can all support each other (...blah, blah, blah – stuff that everybody seems to be doing now so I’m kinda redundant); except I don’t feel like I’m getting that anymore. I feel stuck here...while everyone else is moving on. I have already stopped creating new FibroModem Girl cartoons (although you can still find them all on my website) as there doesn’t appear to be enough interest. And I can’t do this all by myself (I can’t even do the nagging all by myself) anymore... Sourcing articles has become a battle. There has been no interest shown in sharing your thoughts or ideas. And there has been an influx of similar sites, e-zines and FB pages. ...so, for a short while (I hope), I’m taking a break.
I apologise that this is not a fantastic issue to pause on but, at least, it explains why I need to take this pause. I hope to see you all again soon.
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Life-altering physical disabilities may often bring mental challenges such as depression, anxiety… - the list is endless. While we have little control over the physical, the mental can often be changed with a few simple adjustments. So without further ado… Definition: cognition (kɒgˈnɪʃ(ə)n) 1. The act or process of knowing; perception. (This definition is closest to a verb) 2. The product of such a process; something thus known, perceived, etc. (This definition is more of a noun)
In other words, outside of any neurological limitations, cognition is what we make of it. The word ‘perception’ is used in both definitions. Perception is the reality we create. We have at least some control over our cognition, which means we have control over our perceptions. So many of us are led down a path of negative and harmful thought patterns because of our perceptions: perceptions we created! So, our thinking influences our perceived reality. What is your perceived reality? Is it a healthy and positive one? Or is it a destructive and harmful one? Remember, your body is already giving you destructive and harmful feedback - do you really want your mind sticking it to you, as well? For many of us negative thinking overtakes the positive. Don’t get down on yourself for that. Your entire life has become something very different than how you imagined it would be. This throws even the healthiest of people into the depths of despair. The fact that you are here now, reading this, shows that you are looking for ways to help yourself. That’s a positive response to a negative situation. That’s healthy thinking. You are already on the right track. There are two ways to approach the cognition vs. perception relationship. In previous articles, I’ve discussed how to adjust cognition to change perception. But we can also adjust perception to change cognition. Think of it as a “ground up” approach.
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A way to accomplish this is to test our perceptions. For example, when I became sick I was riddled with feelings of worthlessness. I was no longer able to bring in a meaningful income. I was no longer able to be the socialite that I once was. I was no longer able to help people in ways that I did before. All these things meant a great deal to me. Now I felt like a burden to my wife, I felt as though my friends thought I didn’t like them anymore, I felt people who asked for my help thought I was lazy. How could I possibly feel worthy when this was the reality I was living in? Test your perceptions. Talk to people you trust, long time friends, relatives, etc. It takes courage to put yourself out there like that. Do it with people you trust. I asked my wife if she felt as though I was a burden now that I struggle with this disorder. Her answer was “No. We have had to make some adjustments but I feel in some ways they’ve helped us grow. I still love you just the same.” Wow. Here I was thinking she wanted to divorce me, find a man who could provide for her and regretting her decision to marry me. That was not reality - that was just my perception. Without asking her about it, I never would have known how she really felt. What she values in me is different to what I thought she valued. I spoke to my family and friends and had similar experiences. Nothing that I perceived as true in my head was even close to reality. I had created this parallel universe in which my loved ones were better off without me. Speaking with them helped me realize how very wrong I was. Thus, a new reality began. With your perceptions altered, more closely matching how things REALLY are, changing your thought processes becomes easier. With a jolt of encouragement you begin to think of ways you CAN contribute to these relationships, instead of beating yourself up about ways you can’t. My wife appreciates a hug when she gets home and asking how her day was. I make it a goal to do that every day. That is part of what she considers being a good husband. Even on my worst days I can do that. You will find your own thought and behavior adjustments, but first you must join the reality that exists outside of your head. You’ll often find you’ve been living in your own little twilight zone - not a fun place to live. You don’t need to be beaten up any more than you already are. That is what you are doing if you are adding to your mental angst with false perceptions. I have seen some rather unattractive people who think they belong in a magazine’s Top Ten Most Beautiful People. Good for them. I’ve also seen some very attractive people who perceive themselves as ugly. They inflate every flaw and magnify every imperfection. But that is not how others perceive them. Might you be doing the same thing to yourself? The flaws you are amplifying probably carry little weight with the people who care about you. It’s ironic that our lives turned out differently than we imagined. Yet, now we fall into the trap of imagining them differently than they are. Perceptions are a funny thing, sometimes they are so real to us we don’t even realize it’s a fabrication. Occasionally I’ll have a dream so vivid that it takes me a few minutes to realize it was all in my head. I didn’t miss my finals, I didn’t drop out of high school, I didn’t fall off that building. Once I fully wake up, I realize everything is so much different than I thought it was. The same thing can happen with perceptions…it might just be time for you to wake up!
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Julie Ryan is counting her spoons and sharing her journey with FMS, TMJ, Endometriosis, Migraines, and Cluster headaches, along with all the various issues that come with them at Counting my Spoons When I was diagnosed with Fibromyalgia, my doctor recommended water-based physical therapy. I had no idea what that meant and assumed it was just water aerobics. Luckily, I was wrong. Shortly after beginning physical therapy I was introduced to Watsu, a type of massage that is quite different. Performed in a pool of warm water, this massage was often the only thing that gave me any relief during my worst days of Fibromyalgia. Most people are aware that a warm bath can help ease many aches and pains. While cold water may cause you to tighten up your muscles and add tension, a warm (or hot) bath can help you relax muscles and decrease tension. Watsu takes the idea of a relaxing warm bath up a couple of notches.
What is Watsu?
Watsu is a type of massage given while floating in a pool of warm water. The water is typically at body temperature so that as you float you can actually "melt" into the water in a way that makes it at times hard to tell where the water ends and you begin. The term Watsu comes from the combination of the Pro tip! words "Water" and "Shiatsu". Shiatsu is a type of massage where Wear earplugs to the massage therapist applies pressure to various pressure points avoid the feeling of throughout the body to help relieve stress. Watsu takes the basic water going in and idea of Shiatsu (pressure points) and takes things a step or two out of your ears. further by taking you off the massage table and putting you in water.
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What Should You Expect? During the session, the massage therapist will support you while allowing you to float. They may use floatation devices at your knees or back, or they may simply support your neck in the cradle of their arm while you float naturally. The natural movement of the water and the quiet environment aid in relaxation. Typically, the massage therapist will start by gently moving you back and forth in the water, allowing your body to gently and naturally release tension, and allowing your spine to elongate and stretch. Your joints will also loosen and be able to move more freely. Unlike other types of massage there is no set routine that the therapist works through. There are close to 400 different movements and positions that can be used to guide the body through a form of gentle relaxation. The therapist works with each client individually and focuses on their body's specific needs; taking into account the clients own verbal description of how they are feeling on that day, as well as the body's non-verbal feedback given throughout the session. On a particularly bad day the massage therapist may only be able to hold you, while allowing you to gently float back and forth with the natural rhythm of the water. While other days they may be able to use more pressure, or a combination of pressure and specific movements to work different areas of the body.
Does It Help? Definitely! If there is one type of treatment I'd recommend to anyone who is dealing with chronic pain of any kind, and especially the pain related to Fibromyalgia, it would be Watsu. On my worst days it was the only thing that helped. In addition to being relaxing, Watsu increases flexibility and circulation, and opens neuropathways. Watsu loosens your tight muscles and joints and allows you to move more easily, and can decrease the typical aches and pains that come with Fibromyalgia and other disorders.
Where Can You Find Watsu? While the use of Watsu is spreading, the availability is still slim in some areas. If you have a spa with a pool you may find that someone there offers the service. Also, many pool-based physical therapists offer Watsu as part of their therapy services. If provided by a licensed physical therapist, it will likely be covered by your insurance as physical therapy. However, if you receive the service at a spa or in some way that is not covered by your insurance you can expect to pay typical massage prices or higher; an hour of Watsu may run you about $150. Watsu is a unique type of therapy that many are unfamiliar with. However, if you can find a provider, you will likely agree that it is worth the money and the time. For those of us with Fibromyalgia, we need every option we can find to help us learn how to better relax our bodies and release tension. Check your local spas and physical therapy providers to see if you can find a Watsu practitioner near you. Editor’s Note: After reading this article, I immediately did a Google search for Watsu practitioners in my area – I really want to try this!! I am waiting to hear back from one as we speak.
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My name is Haullie, and you are not alone... I have Fibromyalgia and Post Traumatic Stress Disorder (P.T.S.D.) On a good fibro day I'm fun, loving, can crack a joke, can walk and play with my child. The pain of living with Fibromyalgia is still there, but I can function through it like everyone else the best way that I know I can. I have dreams and aspirations. I have goals I still would love to achieve and I have people who love and support me when they see me handling it the best that I can. I appreciate almost anything that comes my way, and I enjoy the little things in life that others don't really take a second glance at. But am I still in pain on a good day? You bet! In fact I don't think there's a day that has gone by in over 14 years where I haven't felt at least some pain throughout my body. I have Fibromyalgia, I have daily chronic pain. On a bad fibro day I'm pissed off, can't focus or concentrate, only crack jokes to keep myself from going insane from the pain, can barely walk from my bedroom to the bathroom because the pain is so intense - I just want to die, and forget about playing with my child or engaging the way every mother dreams of doing every single day of their child's life. On those very bad days, all my dreams are shattered, the goals are broken, and all I have to hold on to is hope. Hope that some new treatment that I haven't tried yet will come along, hope for a cure, and hope that I won't end my life because I am hurting so bad. Every day is a challenge and I have to face a new set of obstacles each day to go with the challenge of living with this horrible chronic illness. For 12 years I went without a diagnosis...without proper medication to help ease the pain...without a support system to help me relate to anyone - I just sorta lived in my own madness and thought I was the only one going through this kind of unique pain. I would discuss pieces of it with people but over the years it gradually got worse so in the beginning my discussions never really went further than the fact that this all began with headaches and migraines and there wasn't a single doctor out of countless, even specialists, who could find out what was wrong with me or even help me with a medication to combat the pain.
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I was put on anti-depressants and anti-inflammatories and all they did was make me more depressed and in more pain. I tried over 35 different types of medications for pain, nausea, high blood pressure, migraines, depression...for over 14 years. I have seen a primary doctor, a chiropractor, a headache specialist, a rheumatologist, an endocrinologist, a therapist. I have had 3 MRI's, a cat scan, lumbar puncture, experimental botox injections, fioricet injections in my back, X-Rays, and ultrasounds to peek on the inside and figure out this mystery. I have been on every elimination diet I can think of to figure out whether it was a food allergy or not anything that eliminates the pain completely for a day. I've been on trips to the E.R. for cluster headaches, kidney stones, abnormal heavy menstrual bleeding and even had to be put on a gurney and rushed by ambulance because my back locked up and I could not get out of bed because the pain was so intense. In every sense of the word, I feel helpless to stop the pain but determined to not give up anymore because I know how easy it is to want that; and giving up is when this illness wins and we just can't let it. This pain has affected everything in my life. I can't say I'm much of a housewife but I try. My mothering is great but, there are times I am just so tired I rely on my husband to take our child to school or get him dressed, give him a bath or cook him food when my energy and strength is just zero to none. My family has to suffer because I am suffering. I think that is the hardest part about dealing with Fibromyalgia: I don't want to make them suffer for my lack of energy. Because I can't drive a car; because I can't keep up with my son's school projects; because I need quiet time when the migraines are bad, everything adds up and, of course, I feel the kind of guilt any wife and mother would feel even though I shouldn't feel that way and I try not to daily. Intimacy, or lack thereof, is also an issue that we can never seem to get through due to the medications stealing my willpower. So that stresses my marriage out. Sometimes the pain is so bad I just get angry and I want everyone to leave me alone and I don't really want to be one of those people but my body and mind leaves me no choice. Sometimes my fibro fog (brain fog, cognitive dysfunction) gets so bad people think I'm not smart or that I can't figure out information the same way they can. Sometimes I think people take advantage of me because they know I have it so when they forget something they can blame it on me and that only causes me more stress when there are times I genuinely can remember something. And I am always doing really awkward things that make no sense because of it, like going to the mailbox and not being able to find my box, convincing myself the manager must have changed all the mailbox locks until I almost get home and realize I wasn't putting my key in the right box: it was another apartment number. How can I forget my own address? Why do I always forget my
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own telephone number? Or I'll put the salt in the refrigerator, make two cups of coffee and have no idea how my toothbrush made it under my pillow. I also get words mixed up or anything that has to do with math which is scary and embarrassing sometimes. It seems like my long term memory is fantastic and my short term comes and goes with the tides. I can remember dates very well for some reason, and people's names and faces. I can even remember some birthdays and details in movies or songs. But anything that has to do with information in general like day to day issues or things gets lost in the fog and I can't always explain it very well. The pain also comes and goes, as well. Some days I feel “functionable.” I can do those dishes, make the beds, cook the food (reasonably) and I can get things done. For the most part, I always take small breaks but I get stuff done when and if I get the opportunity and, even if I want a day to just hang around, I do that, too, because relaxation is important. Other days I feel like I’ve been beaten with someone's baseball bat. I feel bruised all over; my skin hurts and stings, I can't adjust to temperature, I'm sweating in my sleep until I'm drenched and changing clothes three times at night. I can't take a normal bowel movement because my I.B.S. (irritable bowel syndrome) is so bad I am literally screaming on the toilet about to rip the shower curtain down. Before I discovered the drug Topamax, I was twitching and it felt like pins and needles were poking me constantly. Now, with the drug, thankfully that has been cut down to about 75-80% so that helps. But it doesn't stop completely, I still have bouts where I twitch and it's not the kind that people can always see. In fact, hardly any of what I am going through can be clearly seen, that's why they call it the invisible illness. The Topamax doesn't stop the migraines even though it is meant for migraines. It feels like I have a headache that never stops no matter what I do. The only thing I can do is take the edge off by taking Motrin every day which only does damage to my liver. But I have no choice - it's either damage my liver, or deal with a pain that I can't deal with. And I do have a chronic pain management doctor now who prescribed me Percocet, but I can't take that every day either because it can cause a body addiction and makes me feel sick to my stomach and tired so it's a bad trade off. So I am extremely careful to only take that when my back is in extreme pain. Or when my neck occipital neuralgia pain is so intense I can't tolerate it any longer. This is my life with the other 'F' word. In the beginning Fibromyalgia was manageable. It was just headaches. So naturally I thought it was something else. I remember years of going online and doing research, never finding anything that helped and thinking ‘oh, I must have this’ or ‘I must have that’ because there were no doctors giving me any diagnosis or interest. I would never have imagined that what was wrong with me was Fibromyalgia as I had very little knowledge about that particular illness. But it seems like every year that went by I developed a new symptom. And they would start overlapping each other and never going away so it wasn't like when you catch a cold and suddenly you have a chest congestion and then two weeks later the cold has run its course so you know the congestion was brought on by the cold. My new
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symptoms came on and never went away except that they would happen in flare ups. Bouts of time, sometimes days, sometimes weeks where the pain was more intense than the rest or the intensity of the pain would move throughout my body to a new spot so trying to explain that to any physician was extremely difficult. Then both of my biological parents passed away in 2007, only 4 months apart from each other and the shock of losing them both to illnesses I was barely aware of sent my body into chaos. I couldn't deal with the stress of the grief. I'm not saying the stress caused my fibro to become more severe because I will never know, but I think it was the start of me not being able to tolerate it any longer. The thing is: my stress began years before those headaches ever started. I am also a survivor of child abuse by a few family members. The abuse was physical, verbal and mental. There was also some sexual abuse at the age of 11 years old which is still difficult for me to discuss in detail. But mostly it was domestic violence and verbal abuse that I suffered, and being groomed to fail. There were good times but it was tainted with a lot of horrible darkness and a lot of really bad memories. That was our way of life and I really didn't know any better but I thought ‘oh if I just get out of this, one day, everything will be fine. I'll get to live the life that I want and they can't touch me anymore and life will be wonderful.’ That didn't exactly happen as I always carried around that burden until I sought emotional health in the trauma community for many years. This helped me grow from my past abuse. I was able to face it head on and learn new ways of coping so that it didn't affect me every day and now to this day, thanks to that community, I can say that I have many days where I don't even think about it. But that doesn't mean the effects of it don't still linger. My head and body were beaten many times because of the physical abuse. Studies are linking trauma, genetics, viruses, accidents and stress to whatever flips the switch to the cause of fibromyalgia. That doesn't mean that's what fibromyalgia is and that is still up for debate by many scientists right now, but it is a strong link. Whether we ultimately know what caused it or not is not even important to me. What's important is how I live with it. How I choose to view it with a positive attitude and not every day is great, but it's how I make the best of each day that is great. I don't think being positive means you should ignore all your problems like they don't matter. Of course they matter, every story matters. I think having a positive frame of mind means to carve out a better path than the one that was torn up in front of you. It's about making the best of a bad situation and finding greatness in yourself again. Right after my parents passed away I discovered that I was pregnant. I was extremely happy to discover that I was having a child because we had planned for it and I always wanted a boy and I got my boy. I just had no idea about the effects the pregnancy would have on my body which is why I have elected not to get pregnant again; so I can focus on not being that sick again to raise my son. My pregnancy almost killed my body: it was that hard. I had hyperemesis gravidarum and preeclampsia - two major high risk complications during my pregnancy that made my term extremely uncomfortable. It was so difficult to
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move, difficult to eat, I threw up sometimes 3 times a day sometimes, I was depressed, I couldn't get any physical exercise so I just sat down all the time, couldn't sleep well, had to pee constantly, had to be put on an in-home IV drip for the proper amounts of fluids and even haemorrhaged a few days after giving birth to my son, who I didn't get to take home for 9 days because he had to stay in the NICU due to jaundice and low blood sugar. So I was having separation anxiety pretty badly and the stress caused many back spasms. But for some strange reason I had a lot more energy. It was like my body was fighting to keep it together for my son who needed me. I finally did it...I was a Mommy! It was the greatest time of my life. And the beginning of some of the most painful, as well. It was after the birth of my son in 2009 when my Fibromyalgia pain became so bad I felt all was lost. I developed so many more symptoms I could not understand for the life of me what I did to deserve this. The pins and needles feeling became constant instead of just every couple of days; the stabbing pain, sciatica pain was there every day; my lower disc in my back started drying up like a sponge according to an x-ray years later, and locking up; my joints hurt every time I tried to move them and felt arthritic; and, my fingers, face and toes would go numb touching or picking up things. It was hard to even grasp a spoon or a pen without them going numb. My hair started falling out more and more to the point where it's so ridiculously thin now I feel like going out and buying a wig. I have to fake it in photos by pushing my hair as much forward as I can so it doesn't look thin when I am taking pictures. I shouldn't have to do that. I even broke down and bought clip-in hair extensions. I have gained so much weight over the years it hasn't helped. I could blame some of it on the medications but, the truth is...some of it is also due to immobility caused by pain, not being motivated due to depression and the cost of healthy food sky-rocketing to a cost that is so unaffordable it's a cosmic joke! Fibromyalgia has taken just about everything out of me and then some. Just a simple trip to the grocery store can, at times, take too much out of me; taking a shower takes too much out of me; getting dressed and ready for the day takes too much, and then some, out of me. I really got tired of feeling alone in this so I sought out help online in the form of Facebook communities that took me under their wing. Thanks to them I was inspired to create Voices of Fibromyalgia as a way to show people campaigns that I felt were important, projects that had never been done before, and to motivate people to take an active interest in their illness, to show themselves that they are important and that their voices matter. It's a way for us to share what's going on with each other, and it's a way for me to share my tips, stories, stories others have sent to me, questions, graphic art campaigns, projects we or others are doing, the latest news about Fibromyalgia, and, as I'm
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also an artist and musician, sometimes I enjoy sharing my art and creative spirit on the page as well. I find that running the page helps me get through the Fibromyalgia. I can be more of a patient mother and wife. I'm not constantly bombarding myself with feelings of guilt (even though they are still there sometimes, they are not there as much which is steps away from where I used to be.) I have also learned better ways of communicating my illness to those I love, especially my husband and child who has Aspergers so he is learning a little slower than expected but he is definitely making strides and I am so proud of him. We are a happy family and my husband takes great care of me. We have our ups and downs like any family but at the end of the day we are here for each other no matter what is going on. I personally don't claim to know all of the answers about Fibromyalgia. That's not why I created this website and Facebook community. I created it because I want people to find each other, the way I needed to find someone once. A story can save a life and once upon a time it was someone's story that saved mine. I've had many people do amazing, wonderful things for me over the years: from a woman who gave me twenty dollars on a train when I had no money and I was on my own and hungry many years ago before I met my husband, to being able to interview some of the most amazing people in the world who have overcome incredible plights that inspire me daily just like the people who visit the page every day. Dreams do come true if you sway the pendulum in your direction. I created Voices of Fibromyalgia to enlighten people's spirits, uplift confidence and self-esteem and promote self-awareness because that is what this journey is all about. It's about sharing, learning, being yourself, finding connections and developing inner growth. I may not have the best doctors, but I have a great chiropractor, and a great support system thanks to the community. Thank you for reading my story and thank you for being a VOICE of Fibromyalgia. It's never too late for a new beginning.
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May 12th was International ME/CFS and Fibromyalgia Awareness Day. Among a great many activities worldwide was the May12BlogBomb – an initiative by Sally Burch that invited bloggers to write a short post describing their own story, and how illness has impacted their ability to function in society (or, if preferred, another illness related topic)...... Following are some of the blog posts from the day that I found particularly interesting PLUS the links to the others posted on the days (some others have been added since).
Observations on M.E by Leigh Observing ME from the inside and from the outside can tell very different stories. As a sufferer or carer you are acutely aware of every limitation, every pain. Many of us take great efforts to lie to ourselves about the true severity, but when it comes down to it you can’t avoid facing the limitations faced on your life. If you’re simply too ill to dress yourself, you can learn to appreciate the loungewear you’ve been in for the last week but you can’t convince yourself you were able to get dressed. As a friend or acquaintance, you don’t see that side. On the torturous days when the sufferer wonders if they will even make it to the next morning, the outsider can only see their absense. There is no way to tell just from that the severity of the reason for it. On the days when the sufferer is as good as possible – perhaps they make it to work, or they are able to sit up and feed themselves, or able to tolerate a moments touch – the outsider can only see what they are managing in that moment. One who isn’t there all the time doesn’t see what’s going on all the time. That’s why what’s portrayed in those surface glimpses gives such a wrong impression of what’s really going on. I only know that those around me who are suffering are truly in such bad states because I’ve been there myself. I may only speak to them rarely, and always when they are well enough for that, so I don’t see what they are really going through. I see just that but I can’t deny the reality of how awful their situation is – because I know what it’s truly like, I’ve been there. But for those on the outside, those without that intimate knowledge, what impression do they get? When you think of it like that, it’s easy to see how people jump to wrong conclusions. They can’t know how much payback will occur from such ‘simple’ actions, how much careful planning has been expended for the possibility of flicking through a magazine. One who hasn’t seen it rarely dares to imagine the true state of a life with ME. That’s why the job of telling people, of raising awareness is utterly vital – why those who are campaigning the best they can to let people know about this awful disease are doing such an important thing.
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MEaning of life is.... by Alexi Dinks the worst ever flu' with nose and eye snot - then times it by 100 bed after Songs of Praise and calling it a night on the tiles looking like Noddy on smack - without the smack being plugged into the National Grid and looking epileptic
Who doesn’t need more SPOONS!
staggering off a roller-coaster and puking on new trainers your memory foam mattress feeling full of rocks a mole wearing shades "papped" by a thousand flash bulbs walking a tightrope after 20 tequila slammers gorging on chocolate with Mississippi mud pie for afters having 70lb dumbbells attached to your arms all day every day getting up after Bargain Hunt to get an early start the sleep deprivation of a million new mums IM /texts scrolling on their own because you are so bogeyed always getting your muckin' words fuddled up trying to pluck your eyebrows wearing goalkeepers gloves the accumulative hangover of 365 uni fresher days running a marathon attached to a bungee rope knowing last nights vindaloo was not a great idea screaming at the churchyard mouse for making a racket slapping the git who said "no man is an island" leaving your libido on that gut-wrenching roller-coaster ride morphing into Worzel Gummidge on a bad hair day calling a NATO peace-keeping force to open a yoghurt carton waking up paralysed and finding it isn't a dream grappling with buttons and zips on The Krypton Factor discovering the true meaning of IBS - inevitable bum squeak Mindfulness Empathy Compassion Forgiveness Serenity (ME/CFS) having these talents and using them with wisdom and humour
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Art in Illness by Erin Fromkes Chronic illness causes one to experience life in an extraordinary way. As with many artists the creative nature comes from a combination of internalized experiences and imagination. When I am able, I cannot resist the opportunity to paint my interpretation of the medical and psychological happenings through which I’ve lived. My pieces have a tendency to cry out. They have a trapped spirit within that wants to be seen, heard, to reach another. My works are portals that connect me to an outside world. One style of my work is short-lived. These temporary pieces, captured through a series of photographs, are created using pills, pill powders, teas, tinctures and medicines. The use of these familiar substances, which I must consume regularly, serve as mediums bringing forward strange figures and ghostly portraits. Temporary works, arising to disappear, reflect a philosophy of my illusive symptoms, disease, life, time, and existence. These dark visions aim at releasing elements of my illness and strive to capture a visual essence for my viewers to experience. Along with these are emotions of fear, frustration, anguish, loneliness and a eerie desperation to be recognized.
Alongside my pill creations, I’m drawn to create mixed media works. Using materials that are personal and readily accessible, I create paintings that combine acrylics, oil paints and torn papers. My backgrounds are a collage of letters, notes, lists, old prescriptions, doodles and other papered moments of my life. These fragmented scraps make for interesting backdrops and quickly become more intriguing once an image is painted over top. Areas of the background are left untouched for the viewer to see, allowing little bits of information to be gathered, processed and interpreted. This layers myself into each piece and lets the inquisitive viewer learn more about who I am. Connecting to an audience in such a way is therapeutical, for this art helps me to feel less detached, acknowledged, and somehow important, if only for the briefest moment.
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My ME Story by Elaine Stammers In 2005 I began an unpleasant autoimmune illness called Lichen Planus and while covered in itchy spots for months, I began to feel run down and excessively tired. I was in the middle of a terrible stressful life event which went on for 5 years. So began the point that I think of as the start of my own personal journey with ME. In fact looking back I can point to at least 5 years before becoming aware of a poor immune system, and even further back being diagnosed hypothyroid. I can see other markers on the way further back still. Now 9 years on from the Lichen Planus outbreak, my journey with ME has taken me through various points both up and down. I was able to start a new part time job in 2007, but in 2009 after a serious eye op produced a relapse, followed by a worse relapse less than a year later after catching whooping cough, I felt unable to return to the busy working environment and have never been back to work since. I have spent 4 years trying out various approaches to getting better, and some have helped, though none so far has transformed things for me in a reliable way. The nature of ME is that it fluctuates and that I find the hardest part to live with. Some of it is now managed better, especially my severe food intolerances – and eating differently has improved my migraines too. However I still have immune dysfunction and get frequent cold viruses that really drag me down, and give me setbacks. I feel I have come to the end of things I want to try out though, and much of the treatment has been private, and therefore expensive. I am very lucky that I have my 62nd birthday in June, and therefore I will get my State Pension later this year. I feel that the benefit changes have affected so many people with ME for the worse, though even in that I have been lucky to stay in the ESA Support Group for the last few years while I have tried to recover. I learned a lot about the benefits system, and spent 3 years helping and advising other people to navigate their way through, via an online support forum. If I had been pushed by anyone to prepare for work again, then I fear it would have been another relapse both mental and physical. It isn’t that I didn’t want to work, but much of the stress I had before I was diagnosed was caused by the Jobcentre process and that is much worse now for people with the sanctions policy.
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Capturing the Essence by Sarah Caddick How to make the most of life when faced with great restrictions due to severe ME I have been living with severe ME for several years. The restrictions of ME have meant that my level of activity has ranged from lying on the bed all day, unable to stand, only just able to sit up in bed and chat for a few minutes – to moving around the house and garden in an electric wheelchair, riding a mobility scooter for 20 minutes, chatting for an hour and a half. Before the illness I led a very active life – as is the case with most ME sufferers. I was a fulltime infant teacher and I played the piano at our school. I acted in amateur dramatics and played the flute in a concert band. I swam, walked, went on foreign holidays, regularly played Bridge and had a full social life. What a change from all that! I have had to come to terms with living a very different sort of life now. Most of my emotional stress comes from yearning to do the things that I used to do and feeling frustrated with the limitations that now dictate my life. When I am able to truly “be in the moment” appreciating what I have right now, however limited, then I am at my happiest. Obviously this is difficult to sustain. One of the most difficult traits of this illness is the way it allows you to begin to get your life back, and then cruelly snatches it away again. I’m continually trying to find ways to create the best quality of life I can, whatever stage the illness is at – to really savour the few minutes activity between rests, to make the most of limited energy and concentration by doing something I really enjoy. That was how I developed the idea of “capturing the essence.” Put simply, it’s about identifying the enjoyable essence of a favourite activity and trying and to find a way to give ourselves that experience – despite the mental and physical limitations. With some activities it’s possible to do the same activity as before, but for a shorter time. I have often had one course in a restaurant and taken the dessert home to have later, after resting! I have also seen several first halves of plays, and sometimes the second half two days later – and at the matinee, as I cannot be out late in the evening. Our local theatre now gives me complimentary tickets for the second performance. Maybe the day will come when special two-part ME tickets are available! Some activities, however, seem impossible to do anymore. This is where “capturing the essence” works best. Here are some ideas and ways to re-create the essence of the experience depending on the severity of the illness at the time. • • • • • • •
Activity – walking by the sea – the essence is being by the sea, moving, fresh air. Lie on the bed with the window open listening to sea sounds on a CD. On the bed look at pictures of beautiful seaside views. Watch a TV programme like “Coast” and imagine being there. Sit by the sea in a wheelchair. Get pushed along the sea front in a wheelchair. Ride a mobility scooter independently by the sea.
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Activity – being an infant teacher – the essence is being with children and helping them to learn. Have friends’ children to visit and lie on the bed reading stories to them, sharing books, hearing them read, singing. Do writing, drawing, cutting and sticking activities with them on the bed. I’ve found that children love being on the bed with me! Have a sand and water tray in the garden for friends’ children.
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Teach piano for a few minutes to a friend’s child. Go into the school where I used to work for regular short visits to read to the class or listen to children read.
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Activity – amateur dramatics – the essence is performing, learning a script, being part of a team, working on something creative with others. Learn and recite poetry with family and friends Read a story to a friend Record a CD or video reciting poetry Play scrabble, Pictionary, charades etc with others
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Activity – playing music in a group or orchestra – the essence is creating music with others and performing Play duets at home with a friend Perform the duets at home for family and friends, even if only for 5 minutes! Activity – swimming in the sea – the essence is the sensation of floating in water, smelling the salt water on my skin, being in the sea Paddle in the sea from the wheelchair – not easy, but it is possible! Paddle in a bowl of seawater on the prom or even in the garden! Splash seawater over my body Lie in the bath and imagine……… Use a hoist to get into a swimming pool and use floats if your muscles cannot keep you afloat Activity – gardening – the essence is being outside, feeling the soil, making things grow Have raised beds that you can reach Use pots raised to suitable height Plant seeds and bulbs in small pots that are manageable to lift
These activities may not be your favourite hobbies. However, I hope that my idea of “capturing the essence” may encourage you to be creative and to find ways to adapt your chosen activities in order to give yourself the best quality of life possible – no matter how the ME is behaving! Concentrate on what you CAN DO NOW. Don’t compare yourself to when you were well. Focus on your quality of life NOW, whilst keeping a balance of rest and activity. Prioritise, and get help with the necessary personal and household tasks, so that all of your energy doesn’t go on merely surviving. PACE yourself, PRAISE yourself, be POSITIVE, PATIENT and PERSEVERE!
AAMI Park, Melbourne, Victoria, Australia
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BC Place Stadium, Vancouver, Canada
Langevin Bridge, Alberta, Canada
St. Patricks Centre, Downpatrick, Northern Ireland
Brighton Sea Baths, England
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Ability for Agility: Why do I use Wheels? A Life Within an Illness: It's time I 'fessed up... Allan Dickinson: Another Door Closes. An Endless Yearning: International CFS/ME and Fibro Awareness Day Angelsong: M.E. A Day in My Life A Path Through The Valley: Observations on ME Artifacts of ME: May 12th for ME Awareness All About ME: M.E Awareness Week #may12blogbomb Being the Imperfect Mom: I'm not just a Survivor Brainless Blogger: #May12BlogBomb Carole: May 12th ME Awareness Day Cheering from the Sidelines: Tethered Butterflies Chronic Mom: We Were People Too Chronicles of a Chronic Illness Sufferer: Twas the Night before May 12th ChurchMag: M.E. Awareness Day 2014 #May12BlogBomb Cinder Bridge: ME Awareness Day - Free Karina Hansen Crazy Purple Mama: The Significance of May 12th CurranKentucky: Letting The Past Go Dannilion: ME Awareness Day 2014 Dr Courtney Craig: A CFS Story Elizabeth Turp Counselling and Training: The Impact ME/CFS has on Life Edward Court: My Story - Living with and Recovering from CFS Experiment Number One: This is CFS 2014 Fibro & Me: Fibromyalgia Awareness Day Fibro & Me: Timeline Project ..Fibromyalgia Awareness Fibro & Me: Timeline Project - Video Blog Fibromyalgia... My Own Experience: May 12th Blog Bomb Freckles & All: About ME Get Up and Go Guru: This is ME - Guest blog by Katherine (and links #This is ME) Growing Insights: ME/CFS/Fibromyalgia Awareness Day 2014 Healing from CFSME: Chronic Fatigue Syndrome ME - Photos of my experience Hayley-Eszti - Life, Love and Fighting ME: M.E awareness day! My story Hello Kitsune: This is ME - ME/CFS Awareness Week 2014 If I were you I wouldn't start from here: To a first approximation, I'm dead. Info Freak: About ME James Cooper: This is ME
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Jess' ME/CFS Blog: Why does Awareness Matter? Jess' ME/CFS Blog: #This is ME Blog Chain Event Just ME: Why NOT Exercise? Just ME: Guest post from Alexi Dinks - MEaning of Life Just ME: Guest post from Elaine Stammers - My ME Story Just ME: Guest post from Erin Fromkes - Art in Illness Just ME: Guest post from Holly - My Daughter and ME Just ME: Guest post from Penelope - My ME Story Just ME: Guest post from Rosie - A New Me... My Fibro Life Just ME: Guest post from Sarah: Capturing the essence Just ME: Guest post from Wendy Boutilier - ME Awareness Katherine and M.E. : ME Awareness Day 2014 Kealie Mardell: SeeME: Guest post - We desperately need your help Kealie Mardell: SeeME: My M.E. Story for May 12 International Awareness 2014 Kelli A Ellis: Thunderclap!! Today is May12th ~ The International Awareness Day ... Laura's Pen: A Day in the Life of M.E. Learning to Live with ME/CFS: International ME/CFS Awareness Day 2014 Life with ME whilst Studying: Revising ... Or not as the case may be Limited Capability: Why does stigma still surround ME? Living with Fibromyalgia: Fibromyalgia Awareness Day 2014, My Update Mama Chill &M.E: LP - Is It All Spin? Me and My ME Journey: Reflection - Behind the Mask Me, Michael and ME: M.E. Awareness Week: #may12blogbomb Me, Mine and Other Bits: I'm no Florence Nightingale Me, Myself and I: Life for a Young Person with ME Me, Myself and ME: This is ME Me, Myself and ME: But This is ME Montague Mouse: This is ME Awareness Day 2014 Mrs KP Place: #May12BlogBomb My Chronic Life Journey: A letter to my illness Nonsense from my Sofa: #May12blogbomb “This is the face” of M.E. No Poster Girl: My Gallery of Dead Possessions Occupy CFS: On it or in it? One Mad Woman and ME: I really can't be bothered any more Ordinary Miracles: Three Days in the Life... Peak Rambler's Ramblings: Bell's Palsy, Flu and Lymes Disease
Project 52: I want to talk about... ME Pajama Daze: The Uncivil War - confusion and controversy over ME/CFS/Fibro Real Life Sisyphus - Student Life with CFS/ME: CFS/ME Awareness Day 2014 Sand's Life: My Story Sarah Amelia Xandria Whining: ME Awareness Day Sarah at Saje: ME Awareness day 2014: Strength in Unity Sa Ya Ha: What is ME? ( post in Japanese) Sa Ya Ha: We are not alone: It's all about ME (post in English) Sisty Quilts: All About ME Sleeping on the Edge of Sleep: International ME/CFS & FM Awareness Day Slightly Alive: May 12 - My 20 Years with Myalgic Encephalomyelitis Smoothie Spoonie: ME Awareness Spooncast: Today is ME Awareness Day Take These Broken Wings: He Calls Himself ME Tanteros: Misattribution The Huffington Post: Am 12. Mai ist der internationale ME-Tag (post in German) The Life of the Live, Love, Laugh Girl: ME Awareness - The Origin of Sleeping Beauty The Life of the Live, Love, Laugh Girl: ME Awareness - What Lies Beneath Snow's Beauty There's No Such Thing as Perfect: ME Awareness Day The Other Side of The Stretcher: The Other Side of The Stretcher The Get Up and Go Guru: My 5 Fave Ways to Connect ... The ME/CFS Self-help Guru: 10 Things Everyone Should Know about ME/CFS This is My Life ~ Surviving Fibromyalgia: Fibromyalgia’s impact on my life Three Quarters Full: #May12BlogBomb Tips for ME: May 12 Blog Bomb - Fairy Story of the Truth Two Wishes: Life with Chronic Fatigue Syndrome What Will Happen to ME: M.E. Awareness Day Wheeling Along 24: Me & My ME Wishful Thinker 77's Blog: My Struggle with ME/CFS Wolf Dreams: Chronic Fatigue Syndrome - It's an Illess!
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