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Confront Fibro Challenges
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Craft a Positive Vision for Your Future
FM Profile Introducing...The Chronic Chronicles (Jade H)
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And He Said
by Joshua David
How To Paint a Positive Portrait With Words by Sue Ingebretson
14 18 by Jade H.
What If...?
by Melissa Swanson
Positive Thinking, Dream Boards by Tracy Rydzy
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Stop Spinning Your Wheels
Regular Features Regular Contributors What I Have to Say POEM – My Thoughts on Fibro Today by Melissa Swanson FibroModem Girl (Xmas Edition) FibroModem Girl (New Year’s Eve Edition) Product Reviews? POEM – A Normal Life by Simone Moszkowicz HOLIDAY Wish List
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Melissa Swanson daughter & 3 cats. email: fibromodem@fibromodem.com blog: fibromodem.com Facebook page: www.facebook.com/FMawareness Twitter: @Fibromodem Editor: Simone Moszkowicz FibroModem welcomes your feedback, comments and any appropriate contributions to further editions. If you wish to contact FibroModem, please use the email address: fibromodem@fibromodem.com © Copyright FibroModem 2013 The views and opinions expressed here are not necessarily those endorsed by FibroModem . Advertising policy statement FibroModem does not necessarily recommend the products and services advertised here. Please do not assume that anything advertised in these pages has been cleared, vetted or in some way approved by FibroModem. Please exercise your own judgement about whether the advertised service or product is likely to help you personally and, where appropriate, take professional advice from your doctor or health professional before purchasing. Advertisers Should you wish to advertise a product in this newsletter, please contact FibroModem at admin@fibromodem.com.
lives
with
her
husband,
In addition to Fibromyalgia, she has 10 of its “evil sidekicks” as she calls them. She works full time, is a Girl Scout leader, and chauffeur for a 12 year old. She loves watching her daughter play JO Volleyball. She also enjoys her Aqua Zumba & Water gym classes, her online support group, her Facebook Page and writing her blog. 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.
Diane-Marie Williams was born in Vermont, and raised in the Eastern Townships of Quebec, Canada. She is engaged to Michael DussaultJensen (the most wonderful man in the world). Diane-Marie was diagnosed with FM in 2010. She is the Executive Director of Administration for Moms for Marijuana International
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What I have to say
Lenore founded her own group called @SpooniesCouch on Twitter which provides not only hope to Fibromyalgia patients, but those dealing with many different kinds of medical issues. She does because otherwise you don’t. Lenore was in a dark place when she created it, but now, she is on a mission to help others in a nontraditional way to feel better… not necessarily in a pain sense but in overall way: spiritual, emotional, and with a very good social outlet which adds a sense of normalcy to our lives. Not claiming to cure or treat anything remotely like that, @SpooniesCouch’s mission statement is, “We Share Care and Support.” (no more no less). Oh, yes, and sometimes she suffers from a mean case of Bibro Frain!
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Confront Fibro Challenges: Craft a Positive Vision for Your Future When you have one of those moments when you take a long look at yourself and where you are in life, chances are that a couple more questions are going to pop up. Something like: Where am I headed in life? And what do I want? Whether a new year or a new chapter in your life, it’s hard to move forward if don’t know what you’re moving toward. Like a vision for what you want your life to look like. By Dr Gary (Fibromyalgia Connect) If you have a vision in place, what’s it look like? Something you’re motivated to work toward? Or something you hope to avoid? And if don’t have a vision, why not? Living with a chronic condition brings challenges into your life, a whole lot of them on some days. As a result, your vision for the future may not look quite the way you might have thought it would before your diagnosis. But that doesn’t mean your vision for the future has to be covered over in clouds. And can anyone know what the future might bring? Think about your vision as a work in progress, based on positive intentions for what you want your life to look like. Having positive intentions begins with deciding not to focus on what’s not going well in your life — the frustrations and disappointments. And instead focusing on what’s going well, being grateful, and expecting the best instead of the worst. Positive intentions are the building blocks to creating a vision that will motivate and inspire you, and keep you moving forward.
How to Create Positive Intentions Get specific with yourself. You may have a general idea of what you would like to have more of in your life, such as “to take better care of myself” or “to be happier.” That’s a start, but it doesn’t give you a lot to work with when it comes to creating a vision that you can start taking concrete steps toward making reality. So don’t let yourself off the hook too easily. For example, what does taking care of yourself mean? Diet? More activity? Compliance with your treatment regimen? And what about being happy? Does that mean more rest? More fun? A better relationship with someone close to you? The more specific you are, the more likely you will be to ….. Maybe even make a picture. You might want to consider creating a vision board. This is like a collage. Go through some magazines and choose pictures that illustrate your vision for yourself. Include pictures that symbolize how you want to feel, the things you want to be doing, the people you want in your life. Keep it someplace where you can look at it during those times when you feel like you have lost sight of your vision for the future, or when you need some inspiration. Act! Don’t wait to feel like it. I often tell my clients that if they want to feel like taking action before they actually start taking action in their lives, the two of us might be sitting for a long time. How trying the opposite approach: Taking action and letting the feelings catch up? Take a step, even a small step. Make a commitment, try something new, give yourself a push. Taking positive action creates more positive action.
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Look at what’s been holding you back. As you get focused on what you want to add to your life, and take a few steps in that direction, chances are you will also become more aware of what holds you back in life, in case you weren’t aware already. Some of these barriers may be internal, and some of them may be in your environment. Negative selfimage? Finances? Lack of time? Unsupportive people? And get help. You may have a strong sense of what you need to do to overcome some of the barriers that are getting in the way of your vision, but not be able to overcome them on your own. Or maybe you aren’t sure how to get started. So also consider what help you need. And who can help you, such as a trusted advisor. This might be the time to reach out to a mental health professional for some guidance. Don’t go it alone when someone might be standing by, and even eager, to give you a hand. Watch your self-talk. Human beings spend their waking hours in an ongoing conversation with themselves. What’s going in on yours? If you are constantly telling yourself how bad things are, and what you can’t do, then your positive intentions are mostly going to get pushed around by the voice of the big bully in your brain. When you find yourself going negative, using words like “can’t,” “won’t” and “never,” that’s a sign that the bully is talking. Turn the negatives, and the “yes, but,” into “yes, and.” Remind yourself of what you can do. Review your strengths. Look for alternatives. Expect the unexpected. And don’t be afraid to tell the bully to shut up. And watch what you say to others. It’s easy to get caught up in the limitations and negativity of other people who, when they’re complaining about how hard their lives are, they’re reminding you of how hard yours is. It can feel good to complain and commiserate, temporarily, but be careful about letting your vent session turn into a prediction of eternal gloom and doom. So while you’re telling yourself what’s possible, do the same with others. Give voice to your positive intentions, and mean what you say! Build in some accountability. No, I am not suggesting you need to be scolded like a child (though I have to admit, it was effective at times). What I am suggesting is that having someone to “answer to” in some way, who you can check in with periodically on your progress, or lack of progress, who can listen and even give you some coaching when you need it. This might be a friend, a family member, a healthcare professional. Accountability gives you an additional incentive as well as encouragement. And being accountable is a way of affirming that you are serious.
But What About My Fibro? Having a vision for your future is not the same as denying that you are living with a chronic condition. No, I am not forgetting you are facing the challenges of living with a chronic condition and promising you pie in the sky. I am not saying that wanting something causes it to magically appear. Accept your limitations and work with them, not against them. Grab onto a vision of yourself as someone who has positive intentions for the future by focusing on what’s possible instead of what’s doesn’t seem possible. Keep nudging yourself toward the plus column. Your vision is a work in process. Visualize your future. Get on the path and move forward with positive intentions. Sure, brace yourself for some detours. But keep an eye out for the pleasant surprises along the way.
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FM PROFILE introducing...Jade from The Chronic Chronicles
When you're in constant pain, it's very easy to focus on it. It can become all-consuming, and the more you think about it - the worse it feels. Some-one once suggested to me that I try crafting as a means of distraction. I have to be honest: I was a little annoyed - how would painting a pretty picture take my crippling pain away? It seemed a little dismissive. Plus there was also the fact I'd never thought of myself as a particularly creative or artistic person. At school even my doodled stick figures ran Jade is 26 years old, & lives in Essex, screaming in terror, and my art teacher made it England. clear it wasn't my forte, but I thought I'd give cardWhen Jade was 15, she developed making a try. chronic pain in one joint, then another, & I enjoyed making them, but they weren't that great. I'd look online at all the beautiful designs people were creating, and it just didn't feel quite like me. After I'd spent a fortune on card-making supplies, I decided to try my hand at jewellery instead, and in doing so found a new passion. A black & white watch featuring butterflies eventually into every joint & muscle in my body. It took eight years & a lot of money to get a diagnosis. In 2011, Jade discovered she had EhlersDanlos Syndrome; and, due to this, secondary Fibromyalgia, Postural Orthostatic Tachycardia Syndrome, Intestinal-Motility & Autonomic Dysfunction. Due to degeneration in her spine, Jade now uses an electric wheelchair.
The early days of In 2010, Jade joined the local Disability Access Group, & by the end of the year making jewellery was running it as the Chair. weren't easy - my In 2013, Jade had to stop working due to hands cramped up her health, but remains hopeful that she terribly, and I was left will find a way back to working on the with blisters all over services she is so passionate about. my skin. In time my I enjoy making jewellery, including dexterity improved & it helped strengthen some of the muscles hands. And it was disabilityin my awareness items for true ‘rare’ - when I'm busy concentrating on making a new item, my brainand is focused elsewhere. It conditions have a page on facebook to show my creations. doesn't make the pain go away; it just redirects my attention so I'm not thinking about it, which is really helpful. Once I joined the world of crafting - I found more & more other people with disabilities were also there, and finding an outlet in art - by painting, woodwork, ceramics, photography or anything in-between. For example a friend of mine makes 'pain monsters' from felt when she's having a bad day, which helps her create a visual representation of what she's feeling. It took me quite a long time to find out what was wrong with me. Many years of fighting & pleading with the medical community to stop shrugging their shoulders, and to do something. When I was told I had Fibromyalgia, it came as something of a relief. I felt like I
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wasn't alone - there were other people with this stupidly long list of symptoms out there. I wanted to commemorate the end of that fight in a way that also informed people about the condition. I made my first Fibromyalgia awareness bracelet not long after, and then began to receive requests to create ones for other conditions - including some I'd never heard of before. People liked the more personalised feel to the more generic rubber bands that are usually sold. My biggest seller was for Marie Charcot Tooth Disease, and eventually the national charity began to order from me so they could sell them on their website. I also auctioned lots of my bracelets off for the Fibromyalgia Association UK, and also for Ehlers-Danlos Syndrome related charities when I was diagnosed. It made me feel like I was helping, even in one tiny way. An Ehlers-Danlos Syndrome It's very common to walk into a bracelet featuring zebra stripe shop & see a row of pink coloured beads - the symbol of the items for Breast Cancer awareness. condition Yet there are so many other conditions that people often haven't even heard of before, let alone understand what they entail & what it's like to live with them. People have often told me when wearing one of my awareness bracelets, it has sparked conversations with friends & family who had never asked about their health before. The colours of the bracelets are usually the existing awareness ribbon colour, and if there isn't one, then the colours of the national organisation/charity for the condition. Sometimes there are obvious symbols that can be used as charms. Fibromyalgia has an association with butterflies, Autism with jigsaw pieces, Charcot Marie Tooth Disease with hands & feet. Sometimes a spoon charm is added, inspired by "The Spoon Theory" by Christine Miserandino, to which many people with chronic illness relate. My most oft used charm is a silver ribbon with the word ‘hope’ - as I
A crystal Fibromyalgia awareness bracelet
believe that's something we all need in some form. In April this year I had to stop working due to my health continuing to get worse. Being able to make jewellery even if it's only for twenty minutes in the middle of the night when I'm struggling to sleep, has helped keep my spirits up and creativity flowing.
FM PROFILE If you are interested in seeing more of Jade’s jewellery and awareness items you can find her under Sparkly Place Jewellery on Facebook. Jade also writes The Chronic Chronicles, a blog on disability awareness/campaigning, and general pieces on living with chronic health conditions. A beaded Fibromyalgia bracelet featuring butterflies, a spoon and a hope ribbon.
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Many of us with FMS/CFS cannot hold down a job. My previous article detailed how this affects the male ego. Many of those negative effects, however, have no boundaries; whether you be male or female - we suffer the same. Though a large number of us are unable to work, we still have a full time job: Life. Getting through every day is work; it’s a full-time “job.” Although we aren’t accountable to a specific superior for our actions, we often suffer the ill treatment from the worst boss of all: ourselves. Truth be told, were a secular boss to mentally, or emotionally, treat us the way we treat ourselves, one of two things would happen: he/she would be fired or we would leave that job. If we won’t accept that treatment from someone else, why should we accept it from ourselves? We spend so much time in pain, fatigued, depressed, the last thing we need is to mentally beat ourselves up. I’m reminded of the battle of the sexes, men vs women. Arguments often start with a statement that a woman can’t do what a man can, or vice versa. I’m sorry to disappoint anyone but that is an inescapable fact. No woman has ever bench pressed over 1,000 lbs. No man has ever had a baby. Our biology is different, our abilities are different, our value is not. Take either sex out of the equation and mankind wouldn’t go on. Whether men and women are more or less capable at this task or that has nothing to do with their value as human beings. Would you argue that? Probably not…yet often we are guilty of devaluing ourselves because we are physically different. Are we less valuable? Hardly. Our abilities differ from the masses but we are no less valuable. However, I bet that your brain is often processing thoughts and the end result is a judgment about your value. How can you enjoy the level of ability you have if you think you are a “bad” person? You can’t. There is a big difference between surviving and thriving. In order to “thrive” we need balance in our lives. Balance physically, mentally, emotionally. How we achieve those goals will be different for all of us. I’ll cover the physical in another article. A large impediment to us thriving is our thoughts. They are often also the hardest to control because we have tens of thousands of them in a day. Ironically we do it without thinking. Teaching ourselves to monitor and alter our thoughts to our benefit doesn’t come easy…neither does bench pressing 1,000 lbs.
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Our thoughts are often directed for us, by pain, fatigue, etc. No matter how hard we try to keep our mind off it, we keep coming back to those thoughts. Try and reverse that…I mean literally, reverse it. If you are having intense pain, allow yourself to feel the pain. I’ll give you an example: I get a specific sort of pain that I can only describe as “bone pain.” The pain feels like it’s in my bones, or running around the outer edge of them. It feels like the bones are in a vice, clamping them in directions they don’t naturally go, like they are being crushed. Today I experienced that pain. However instead of trying (and failing) to take my mind off it, I tried to think specifically about the pain. What I could compare it to? How high I would rate it on the pain scale? Where it is affecting me? How I would try to describe it to a normal person?
Before I knew it I was listening to songs on the radio and thinking of ones that would be good for certain contestants on the show “The X-factor.” My brain didn’t migrate back to the bone pain. The very thought process at which we often fail, the one that often irritates us so much…we can use that to intentionally “fail” with our negative thoughts. Forcibly dwelling on our pain or any negative thought often results in being distracted by good thoughts, brightening our day. Another negative thought which often overtakes us is endlessly thinking about our list of things to do. We have to get things done, we’ve woken up to another bad day, and that list of things to do grows longer. As that grows the urge to obsess over it can become stronger. The outcome is a negative judgment of ourselves, anxiety, stress. Nothing good comes out of it. A way to deal with this is simply to be logical about it. Why do we keep going over that list that just results in negative thoughts? Are we going to forget? Hardly! We KNOW the list. We’ve gone over it a hundred times in our head. We don’t need to call it to mind, it’s detrimental to do so, and we aren’t going to forget it. Stop regurgitating the list…at least that list. Make a new list. But put this one in writing because this list you will tend to forget. The list should be substantial and consist of: things about yourself that make you happy, accomplishments you are proud of, things in your life that make you happy, things that make you laugh (when my dog passes gas and then gets up to lay in a different spot) anything uplifting. You now have two lists. One list is easy to recall and negative, the other – hard to compile, hard to remember, hard to repeat, but beneficial. Swap out the lists. Actually visualize being at a ticket counter somewhere and handing your negative list over to a person and they hand you back your positive one. Picture yourself reading it and the emotions that will show on your face as you read it. Adjust this as you see fit, what’s important is swapping your negative list for the positive one. Techniques like these can often improve our attitudes, completely change our outlook each day we report to work, which is every day. Earlier in the article we talked about working for a “jerk” boss. Would you enjoy that job? Of course not. Would you be that kind of boss, treat people in that manner? Unacceptable. It is no less acceptable to be that kind of boss to yourself. You are your most valued employee. If you aren’t “Employee of the Month”, every month?…it’s most likely a “boss” problem, not an employee problem. Find a new boss, you’re worth it.
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My Thoughts on Fibro Today Fibro people are like snowflakes Not one is the same. Each person has their own aches Searching to find what will help them like it’s some sort of game. The aches and pains – “How did you hurt yourself?” What did you do? A physical therapist is where we should send you. The tests show “You are fine” Those are the words that are said “You’re imagining it” – “It’s all in your head” They prescribe meds for the pain, anxiety, insomnia & to stop being sad I feel like a yo-yo, Just want to scream and get mad. First your mind is racing like a pinball game or as if you are trying to get through a maze Then it goes blank and you are in a foggy daze. Gone is the phone numbers you have dialled for years You can no longer remember and it brings you to tears. Ahhh, forgetfulness – you are told It’s just a sign that you are starting to get old. How can a syndrome that makes you feel every ache and pain so much Also, create a numbness so that you can’t even feel your fingers to touch. You are simply stressed out – you need to relax If you are not careful you will have another Fibro attack. So very exhausted – can’t keep your eyes open Just a few hours of painless sleep is what you are hoping. It hurts to move and it hurts to sit It doesn’t matter either way you feel like shit. Who cares if you’re stiff, sore and tired Daily trips to the gym for a quick swim is required. These are a few of the obstacles that can create the daily strife If you have fibromyalgia in your life.
Are you Fibro?
a
man
with
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 13
Sue Ingebretson is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia editor for the ProHealth website community. Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™ - a therapeutic stressrelieving tool which provides powerful healing benefits with fun and whimsy.
Have you ever felt crushed by the hurtful things said to you by someone else? Why is it that the sting from angry words lasts longer than the sweetness of those that are kind? There’s a natural human tendency to react to and dwell on the negative. It’s there as an instinctive response to keep us safe … and that’s a good thing. We should be more aware of things that are potentially dangerous or harmful. This knee-jerk safety reaction, however, becomes a problem when it applies to the intangible effects of words. Even though words are intangible, the negative effects that stem from them are not. Negative emotions, fears, and anxieties have a direct physical impact on the body. In fact, the body feels every thought we have. That’s why it’s so important to tackle negative thinking in a very real and powerful way.
Words can hurt – and, they can also heal. To help you begin your healing journey with words, here’s a craft project that’s simple for anyone to create. It’s basically a standard vision board – with an easy twist. Rather than using photographs, images, and graphic designs, use words to create a Word Portrait! Create a Word Portrait of your desired personal health goals or lifestyle dreams using words and phrases that have special meaning to you. You can “paint” a picture to serve as a daily reminder to put yourself in a positive frame of mind. And, the best part? There’s no artistic talent required. To begin, decide on your desired theme for your Word Portrait. Do you want it to have one main theme (i.e., health, nutrition, fitness, etc.), or a combination of themes? Next, gather
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old magazines, newspapers, ads, coupons, catalogues, and junk mail. Grab a pair of scissors and sort through the printed items looking for words that grab your interest. For example, search for words such as - health, healing, joy, lifestyle, nutrition, love, wholeness, family, travel, life, bliss, miracle, transformation, renew, laughter, etc. Of course, cut out words that fill you with a sense of positivity and hope.
Feel free to cut out pictures and images, if they help to carry out your theme. This project is all about creating a visual portrait of what you want, not necessarily what you have right now. What changes would you like to envision for your life? What are your dreams and goals? Keep these positive thoughts in mind as you flip through magazines and advertisements. When you’re in a positive frame of mind, you’ll be surprised at the abundance of titles, headlines, and positive words that jump out at you. The final step in this project is to arrange your clippings onto a poster board, cardboard, or any thick paper you happen to have on hand. If you like, create a border first with ribbon, wrapping paper, or anything interesting from the ads or magazines. Don’t worry about laying out everything “just right.” There’s no such thing. Simply arrange the words on your backing board placing the larger clippings down first and then adding in the smaller ones as you go. Use a basic all-purpose glue and affix your clippings to the board. Again, don’t worry if you’re not a particularly artsy or crafty person. This is YOUR Word Portrait and the only one it needs to please is you. When I facilitate health and healing workshop s, it’s always exciting to see the variety of finished vision board projects. It amazes me to see how the attendees marvel at their own creations. You see, each one began the project convinced that it wouldn’t “turn out.” But, it always does. Keep this in mind as you start. Just jump in and see what evolves. Your Word Portrait will help you to feel happy, energized, hopeful, and positive about your future. Consider making it a family activity so you can support each other’s dreams, goals, and plans. Are you ready to paint a positive portrait of your future? It’s as simple as finding the right words.
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by our regular contributor, Melissa Swanson. Please see her biography on pg 4.
What if? Using those two words in front of almost any question can have a very powerful effect. Throughout the years you are presented with so many what if questions. Some can be answered without so much as a single thought – others will take time, thought and effort. It was so much easier when we were younger & the what if questions were so much simpler. What if you didn’t look right? What if someone spoke to you? What if you didn’t pass a test? What if … add all social questions… These questions were devastating for a shy girl in school. They seemed like the wrong answer could ruin your entire life. During the past 2 years, I have begun to pose the what if questions to myself. When the symptoms began to appear, the questions were “What is this? “Why can’t they find out what is wrong? Could this really be in my head? Why can’t someone find something to stop the migraines?” I found a doctor who was willing to take the time, listen to me & begin running tests to eliminate some of the possibilities. It left me with more questions. This is when, after talking to my family, I found that most of the conditions they were trying to rule out were in my family history. The researcher in me spent hours looking online. Googling the symptoms. More ?’s. I was finally diagnosed ~ Yeah ~ an answer to my questions. This should have been such a relief. The only relief I felt was that I had proof to those who doubted my symptoms were real. I had proof it was not in my head. That relief only lasted for a short time. After that I searched for blogs, chat rooms, articles and websites where I could read more on Fibromyalgia. I have met the most amazing people who have been living with Fibro and all of its other conditions for years. I have had many questions answered by them. They too are still dealing with trying to find answers to questions. Fibromites are always struggling for answers: Will this medicine be the one to help? What side effects will I get? What happens when the fog or the physical pain is too much to bear? Will I lose my job? How can I stay active in my child’s life? What if I can’t walk anymore? It was so much easier as a child – Does so & so like me? I used to complain about the question “What is for supper?” I always wished I had a crystal ball ~ showing the answers to all my questions. I have changed my mind ~ as difficult as this questioning journey has been for me. I would not have grown to understand unseen disabilities. I would not have been brave enough to start my blog & share the site with others to read. I would not have gone white water rafting. I would have stopped asking myself what if questions & I would have just lived with “this is my life.” I would not have decided that the dragonfly’s existence should be everyone’s life motto “live life to the fullest”.
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This article has been reprinted from the website Oh! What a Pain in the... with the permission of the author, Tracy Rydzy, MSW, LSW. Tracy began writing about life with chronic pain, but has branched out to look at life with all sorts of pain – physical, emotional and mental. Pain is Pain.
Anyone who regularly reads my blog knows that this year, the last few years, I have been in an emotional & physical hell. Over the past couple weeks something has changed. I am still in pain. As a matter of fact, I ended up needing an emergency root canal & had a severe allergic reaction to the antibiotics they gave me that caused my throat to start to close which landed me in the ER where they tried to tell me I was having a panic attack. My health is still in shambles, my marriage is still over & my bank account is depleted, but here is the strange thing- I am happy! I have recently realized something I have always known, if that makes any sense. I am extremely negative & have spent my life waiting for bad things to happen to me. By doing so, I think I really have brought about negative things. Now, granted, I have recently been very positive & bad things are still happening, but wonderful things are happening as well. My spine is degenerating & no amount of positive thought is going to change that, but I am finding my reaction to bad things is slowly changing. Don’t get me wrong, though, this is taking an immense amount of work & energy. I have to make a CONSCIOUS EFFORT not to be sad. A couple of weeks ago the reality of my life hit me. My husband is not coming home. BOOM. I am getting a divorce. BANG. I will be fighting with pain for the rest of my life because there probably is not a cure. SLAM. These realizations hit me one by one as I drove home from the gym, crying. But then something wonderful happened. I accepted it, especially the things in relation to my marriage & an amazing thing happened - the chains were gone. The chains that had been wrapped around my heart & my mind for months, years even, dropped. How did it take you so long to realize you were in pain? you might ask. It didn’t, I know I am in pain, but I finally accepted this is just something I am going to have to live with & figure out. In other words, this is something I have to control rather than let it control me. With this acceptance, I took a deep breath, wiped away my tears & said out loud, “Done with that.” It’s time to move on. From everything, the relationship that didn’t work, the pain I can’t control that will always affect me, the depression that keeps me wrapped up in chains. Will I never be depressed again? Absolutely not. There have been times since this revelation that I had a memory or I heard something that made me sad & I wanted to be
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sad, and I will be on some days because I don’t believe in fighting emotions, but right now I told myself, “Okay, that is sad, but try to hang on to the happiness, if you can.” Giving myself permission to “just try” means that it’s okay if I can’t hold on to the happiness. So far, I have been successful. This new sense of freedom of happiness has also broken a pattern of isolation I have had for months. I made it a point to make plans for a few hours every night of the week until tonight. I saw my friends for a couple hours, went to a meet-up, dinner with family, whatever. The more I do, the less time I have to think. I also looked up an article about making a dream board because I need a visual reminder of the things I want in life, the things I need. I am starting to understand that what you think about, you bring about. I read “The Secret” years ago & I wasn’t in the right place to understand it. I thought it was over-hyped, but it’s true. If I keep going, saying how much my life sucks, my life is going to suck. But if I try to believe things will get better, I think they will. I hope this helps someone, anyone. I have seen a lot of comments and I know the place so many of you are in, I have spent most of my life in that place & I am clawing my way out of it. It’s a hard fight. I don’t mean to make any of this sound cliché, easy or as simple as pasting some magazine pictures together & thinking happy thoughts. I know what it takes to even think one positive thought when pain is tearing at your body. Because of that I also know the reward if you can grab even a few minutes of that happiness.
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by Jade of The Chronic Chronicles. For more info about Jade, please read our introduction to her on pg 8.
In the next year some of you may be pondering the decision of whether or not to use a wheelchair, if you're finding walking painful or exhausting. It's an incredibly difficult decision, and there are often a few reasons why this hesitation happens. For some it can feel like giving in, that's you've stopped fighting. It can sometimes feel like you're sacrificing your mobility - that if you have a wheelchair you won't push yourself walk at all anymore. There can be a stereotype that wheelchairs are for people who cannot walk at all, or just for older people. It can feel Jade’s electric wheelchair an Invacare TDX embarrassing, or like you're making a big deal out of your situation. There are lots of valid (& some not so valid) reasons that can make that step a hard one. The main suggestion I put to people wrestling with this decision is - are you avoiding going to places because you struggle to walk around? Have you stopped going out for a walk with your family, going on a shopping trip or not even considering an evening out with friends? That's the position I found myself in a few years ago. I was simply avoiding those activities because walking was so painful. One day someone offered to push me around a supermarket in a manual wheelchair they had available for customers. I hesitated - they were for people with disabilities! Eventually I gave it a go, and the difference it made was incredible. I could spend time looking at what I wanted, browsing through the aisles something I hadn't been able to do for a long time. My attitude changed, and I began visiting shops or places I knew had wheelchairs or scooters for customer use. (I also accepted I was one of those people with disabilities during this time.) I did find being pushed in a manual wheelchair very odd though, but it was my only choice as I'm unable to self-propel. It feels like you're giving all of your independence over to the person pushing you, and it’s hard to explain what this feels like - as an adult who has been making their own decisions for years. That person has the power to decide where you go & what you will do, and you have to trust them implicitly. It’s also a physically exhausting job for them. There are lots hazards you don't really consider when walking such as hills, pot holes & curbs, plus generally poor accessibility like having no ramps, tight turns, advertising boards on the pavements & other street furniture. The strain it put on the person pushing made me feel very guilty. The cost of a wheelchair or scooter can also be difficult to afford. I was provided a manual wheelchair on the NHS, but as I couldn't use it independently & didn't have anyone to push me around 24/7, it mostly sat gathering dust. The decision for upgrading the manual was taken out of my hands by damage to my spine that means I can now only walk very short distances. As I was working at the time I was able to apply for grant funding for an electric wheelchair & a hoist for my car that was available to help disabled people in employment.
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Continued from previous page Other options include schemes to lend a chair or scooter for a short period of time, charitable grants or medical insurance that may help towards a purchase. A decent wheelchair will be costly, but it's also worth considering buying secondhand through private sellers or online outlets. However, getting a wheelchair changed my world overnight. I've been able to go on family outings, visit local parks & enjoy trips out to local shops. It means I can save my energy & pain levels from increasing through walking & use them on enjoying myself instead. I still sometimes feel awkward around family & people I haven't seen in a while - but if they can't accept your need to get around without agonising pain - that's their problem. So if you're sitting at home still trying to make that decision & thinking of the negatives - try to think of all the positive things you could do that you haven't been able to do in some time if you've struggled with walking. A wheelchair could open more of the world to you.
LHJ194
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Product Reviews It never hurts to have an array of products to combat Fibromyalgia. We need all the help we can get because relief cannot always be found in a prescription. I’ve lost my reviewers, so I’m looking for people to review the great (or not so great) products you have used. It’s not a paying position (sorry!) but just think of how you’ll be helping other people just like you. Tell us about the product and give it a review out of 5 butterflies. Send your product reviews to FibroModem.
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I remember when life was normal…
A Normal Life 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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10M Purple 100-LED Christmas Fairy String Light $11.68 - available at http://www.lightinthebox.com
Plush Purple Monkey $12.85 - available at thepurplestore.com
HMDX Jam Plus Portable Speaker - $46.95 available at amazon.com
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A CURE - PRICELESS
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Wish
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