LIVING WELL with FIBROMYALGIA December Volume 1: Issue 3 by Fibro modem

Volume 1: Issue 3 December 2012

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This Issue 9

PERSONALLY Sheila Crawford shares her FM story

Good Communication

Introducing...Fibro For Men

Neat NAET Nambudripad's Allergy Elimination Techniques

HAPPY HOLIDAYS 21 23 25 27

FM Profile

20 32

Anxious for the Holidays Wishing you a Fibro-Friendly Christmas Find the Essence Within Lighting up the Holidays… Cannabis for Stress and Anxiety Christmas Wish List

Regular Features 3

What I have to Say

SHORT STORY – One Day by Rebecca Thomas

FibroModem Girl

What You had to Say

POEM – Butterfly by Melissa A. Hernandez

Research News

POEM – Recovery by Melissa A. Hernandez

POEM – by Emma Avery

Happy New Year 33 Where are You Going in 2013? 35 Celebrate

37 43

The Valentines’ Day Sealed Section Valentines’ Day Wish List

What I have to say

email: fibromodem@bigpond.com blog: www.fibromodem.wordpress.com Facebook page: www.facebook.com/FMawareness2012 Twitter: @Fibromodem Shop at: www.freewebstore.org/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@bigpond.com ÂŠ Copyright FibroModem 2012 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 fibromodem@bigpond.com.

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ONE DAY

by Rebecca Thomas

The blackness of slumber lifted and she stretched to greet in the morning, but quickly recoiled. She hurt: her head hurt, her neck hurt, her shoulders hurt, her back hurt, her arms hurt, her hands hurt, her hips hurt, her knees hurt, even right down through her feet. Lying on her side, curled up in the foetal position, she shut her eyes and wished for the blackness to return and take the pain away. But there was no comfort and no more sleep. Time to rise, she guessed, and confront the day. Yet another day. Sitting cradling a mug of coffee, it was time for the next daily ritual. The cardboard boxes lined out in front of her, she opened them one at a time. Two tablets from that box, one from this. Gulping each down with a swig from the mug. They helped, she was certain of that after missing the plethora of starch buttons, but only to take the edge off her misery. It would probably be a further two hours until she had the strength to move and take on the day, until then she made herself as comfortable as possible on the sofa and turned her attention to her laptop. Silly applications and games are what she took on to pass the time. To think a year ago she was sitting exams for the final year of a degree, something that she couldn't contemplate now; most of the time she didn't even know the day of the week. Forgetfulness, the fog that encroached on everyday being, accompanied the pain and lethargy as sure as salt goes with pepper. There was no escaping it, the cloak of grey that hung like a curtain blocking out continuity of thought. So what did the day hold. A diary was a must. Everything listed, from the housework to highlighted appointments that mustn't be missed. It didn't mean she'd do it that day, but then she had her life and nothing was that important.

Being a better listener is a great start to better relationships, says Dr Charmaine Saunders Communication is a two-way street and the listener is just as active a participant as the speaker. We often forget this and come to believe that as long we are talking, we are getting our point across, and the listener automatically understands us. Nothing could be further from the truth. Poor communication is the single most common factor in relationship breakdown, and learning to communicate effectively, not just talk, is a vital skill in getting along with others - people we live with, work with, are related to, are friends with, or meet on the street. Further complicating the process is that, in the moment it takes for an utterance to leave a speaker's mouth and enter the listener's hearing, it is already translated into the listener's code, and that is why so much misunderstanding occurs between people. For example, you might ask a simple question which can be heard as an attack, you could pay a genuine compliment and be accused of being flattering, make an innocent comment and have it totally changed to something sinister in the mind of the listener. All this happens in seconds and is mostly unintentional. The best illustration of this process is the child's game of Chinese Whispers, where a chain of people repeat the same phrase or word over and over but the last person often finishes up with a message that is completely different to the original word or phrase. This is often a fault of listening rather than speaking. So, how do we help the people we love to listen better, and by doing that, improve our chances of being heard and understood?

Some general tips for better communication:  be a better listener yourself and always speak clearly and concisely  make sure you have someone's attention before you start  establish eye contact  ask for confirmation that you've been heard  approach every exchange in the same way; not one way for requests, one for criticism and one for general news  minimise the chatter when you have nothing special to say, as people tend to tune out if you talk incessantly  don't be too subtle as hidden, or double, meanings can easily get lost  always communicate with love, even if you're angry, as verbal attacks simply put people on their guard or cause them to reciprocate with similar unhelpful emotion

There are some basic requirements for effective communication that will help you achieve the desirable and important aim of being heard.

The most important requirements for effective communication are: Self-esteem: Without a strong sense of self-worth, it will be difficult to find your own voice, let alone ensure people listen to it. Know that you have a right to speak up, that what you have to say is valid, and then speak without fear. Empowerment: If you wait until someone asks for your opinion or allows you time to be listened to, it might never happen, so hold your own power and ask for these things and feel confident to offer your views. Boundaries: Have clear and firm limits that you are sure of and have outlined to others. Saying no is difficult but vital at times; not taking on issues and problems that belong to someone else; letting your family know you have individual needs that also merit priority. Assertiveness: The rules of this most crucial life skill are simple: speak softly but firmly; say it once; walk away after speaking or change the subject - don't stop to argue. Yelling is an ineffective way of trying to get your point across, and it's not good to be passive either (nor is it useful to give in all the time). Assertiveness is the balance between the polarities of aggression and passivity. Let's look at a specific example where you are trying to get your partner to go out on a date with you. Nagging and shouting won't work because they feel justified to disobey when requests are presented negatively and sound like harsh criticism. An assertive approach might be something like, 'To enable our relationship to grow, time together is important and I'd like to go out with you on Friday', without further additions or embellishments. If they sense it is important to you, because of your assertive manner, they might be more likely to oblige. Conversely, with someone close to you who's trying to get you to do something you really don't wish to do, a gentle but firm no with a brief explanation is the way to go.

Complaint, request and news In relationships there are three types of communication that are commonly used, to varying degrees of success: complaint, request and news. Complaint: This form of communication needs to be avoided as the listener can easily turn off from their partner, as they experience the complaint as criticism or contempt, all of which do nothing to build an interpersonal relationship. Request: If you want to go to a certain place for a holiday or make a household purchase, state your case and offer your reasons and helpful information. Some people like to keep conversations simple and if they're given the facts clearly, they're more likely to consider your request seriously. Remember you are an equal partner in your marriage and therefore have a 50% vote in all decisions. News: Do not to go on endlessly about a topic you know will bore your partner, for example, your boss's wife wore a new outfit to the office or a new recipe you've found. A good rule is not to tell news but to share news - ask about your partner's interests and their day, as well as talking about what you want to. Discussing daily events and news is an important way to learn about your partner's life, struggles and feelings. As a general rule, don't repeat yourself, negotiate arrangements to the minutest detail or allow people to ignore you. After a request ask, 'Do you know what I want?' After a criticism

ask, 'Do you understand my point of view?' Sometimes, it's also necessary to double check with, 'What did you get from what I said?' In this way, they realise you won't let things slide. Your time and energy are precious and you don't want to waste them on useless speech make every word count.

Conflict resolution Instead of waiting for anger to erupt, possibly leading to a fight, try to discuss disagreements and differences without emotion. You and your partner should each bring your separate issues to the table, listen carefully to each other and then be prepared to brainstorm solutions. Compromise, of course, is essential. Once a strategy has been agreed, it needs a trial period, after which it can be reassessed. This may sound tedious but it prevents a build-up of resentment over time. Prolonged discussions in anger are to be avoided at all costs. When emotions accelerate, one or both people should call time out. I'm often asked this question, 'Should I walk out if I can see the fight is building into a nasty exchange?' My answer is yes but not as a copping out. Storming out is not the answer. Calling a time out is, with the promise to re-address the contentious issues the next day when emotions have died down. A spirit of reconciliation and forgiveness is also essential as holding on to ill feelings, grudges and bad moods prolongs the quarrel and creates further resentment. Here again are the main ingredients needed for positive relationship communication:           

good listening and expressing patience self worth generosity of spirit/forgiveness stress management mutual respect resolving old baggage sense of humour acceptance and tolerance honesty conflict resolution

Be positive in your approach, expect to be heard, and you will be. Ultimately, good communication is a matter of respect, honesty, caring, and mutual effort the cornerstones of a good relationship. Source: Reprinted from http://www.novamagazine.co.nz/index.php?option=com_content&view=article&id=371:goodcommunication&catid=25:relating&Itemid=15 Dr Charmaine Saunders has been working in the personal development field for 20 years after a teaching career in English and Literature. Charmaine holds the following degrees: Associateship in Speech and Drama, WA, 1968 Bachelor of Arts (literature & psychology), WA, 1976 Diploma of Education, VIC, 1979 PhD (social psychology), US, 1983

Personally Sheila Crawford was a family law paralegal until a car accident in 2009 brought some major changes to her life. It took until 2011 to receive a definitive diagnosis of fibromyalgia. Sheila lives in Jupiter, Florida. She is a single mom to three children aged 25, 21 and 18, and her mother’s legal guardian. Sheila is currently the Director of Legal Services for a non-profit organisation called The Toby Center, and a public speaker on the subject of domestic violence. In February, 2009, I was stopped at a red light; when, in a matter of seconds, two cars collided & one car flew over the median strip & t-boned me. I had emergency surgery for my broken neck & a three level cervical fusion. My attorney kept telling me how serious my injuries were & the possible long term effects. My neurosurgeon explained to me that I would never be the same again. I was going to have flare ups, wasn’t going to be able to lift more than 5lbs, & would have limitations – for the rest of my life. I didn’t expect that the limitations he was referring to would be fibromyalgia. Since my surgery, I have had only problems with my health: chronic fatigue, pain, stiffness, headaches, insomnia, IBS & the list goes on. I just assumed these symptoms were normal & that they would go away. About 2 years after my surgery, I began noticing an increase in the intensity of muscle pain & stiffness, memory loss, and extreme fatigue. In 2011, I met with a rheumatologist who diagnosed me with fibromyalgia. I knew my life was never going to be the same & would consist of stress management, medications & lots of rest. Little did I know how badly it was going to affect the only option I had to support myself & my family - my employment.

I had been a paralegal for over twenty years working primarily in the area of family law. I worked for high profile, heavy litigation firms, which required long hours & weekends. It required sitting hunched over a desk from 7am until sometimes 2am, without taking breaks. When I was diagnosed with fibromyalgia, I didn’t tell my employer immediately. She knew I was often tired & had trouble concentrating. She was a stickler when it came to attendance &, in her mind; sickness meant you were having problems in your personal life. I was able to work for about 8 months after my diagnosis. The medications were helping with pain & muscle spasms but not with the exhaustion or brain fog. The day finally came when she asked me what was wrong with me: why I couldn’t lift a trial box; why I was wearing pain patches; why I couldn’t walk without limping. I told her about my diagnosis. She appeared sympathetic, telling me that anything she could do to accommodate me, she would. She agreed to allow me to take a lunch break on the days I needed to go to the doctor & I agreed to schedule my doctor’s appointments late in the day.

The following day I noticed that my employment duties had been increased to include lifting, bending, pulling & longer hours - all the things she knew were difficult for me to do. When I reminded her of my health issues, she & another employee in the firm started laughing at me about my ‘fake’ disease & my ‘quack’ doctor. She told me she did not hire me to be lazy & she was not falling for this ‘excuse’ that I was giving her. I was completely in shock, & hurt that my honesty about my fibromyalgia was being turned around & used against me. My illness was now office gossip. Everyone was making fun of me. I allowed her to make fun of me & make jokes about doctors who will diagnose patients with anything to make a buck, without argument. Five o’clock would come around & suddenly, I was not permitted to leave. I had to stay late & complete all of my work - work that my employer believed I had not completed in a timely fashion because I was using fibromyalgia as a crutch. The economy wasn’t good and I couldn’t afford to lose my job, so I shouldered her abuse. Every single day, she made fun of me, told me I was getting old & arthritic, said I was lazy, overweight & an attention-seeker. Every single night, I would leave work, get into my car & cry my entire way home from work. The minute I walked in the door I was so stressed out from the abuse that I would fall asleep. My pain started to intensify rather fast. I was unable to get out of bed in the morning & would have to call a friend at 6am every day to come by & push on my back so that I could get out of bed. I couldn’t dress myself or shower due to pain. Yet, my mind dwelt on the

comments made to & about me. Shortly thereafter, I started having chest pains. I knew something wasn’t right with my body & I just assumed it was stress. I was taking Xanax to help with the anxiety & get me through the day. My immune system was going downhill & I was catching every single flu-bug around. The chest pains were occurring daily & I started having heart palpitations, even while lying down. I contemplated going to the E.R. on numerous occasions but I knew if I was admitted, I’d lose my job. Finally, one day, I asked if I could take a lunch break to go see my doctor. While at the doctor’s office, in tears, I mentioned the bullying at work. The medical assistant took my blood pressure & to my surprise, it was 180/118. I was given blood pressure medication & a heart monitor holster to wear during the day. The next day, I arrived at work, with my doctor’s note (the only employee required to provide one) & my heart monitor. My employer downplayed it & said that she also had to wear one &, if anything, I was probably not able to handle the job. I sat down at my desk; started working & then the bullying began again. In front of me, she & another staff member were talking about me & how my ‘quack’ doctor was just trying to make a buck. Before I knew it, the chest pains began. I was barely able to walk due to the pain & stiffness in my back & shoulders. I left work, went to my doctor & explained the situation fully to him. His diagnosis: my employer & work environment were causing me more harm than good. He suggested I find another job immediately before I ended up having a stroke. Once again, I presented my doctor’s note to my employer. Suddenly, my employer decided that everything I did was wrong. Further, had she known that I had a ‘disease’” she never would have hired me.

Personally – personal accounts of FM battles

I broke down in tears. I was told that she didn’t have time to deal with someone with health issues; & she knew she could not get into trouble for discrimination because the firm had less than 5 employees.

make the world aware of this condition & the lack of a cure. We are not looking for sympathy - we need understanding, acceptance & acknowledgement of our condition.

I ended up in my doctor’s office again. He suggested I file for emotional distress & quit my job immediately or take a medical leave of absence, which I did – for one week. During that week, I was informed that my absence was inconvenient so I would not receive paid medical leave.

Fibromyalgia is a REAL disease - you may not be able to see it like many diseases such as cancer, HIV & diabetes, but it is JUST as real & just as chronic.

OUR NEWEST PROJECT

I finally gave up & quit my job. I contacted an attorney & was told that I didn’t qualify for emotional distress due to the small number of employees at the firm. So, as a result, I was left with permanent high blood pressure issues & medication for the rest of my life, no insurance & fibromyalgia.

The Honourable Tanya Plibersek MP is currently the federal Minister of Health (in Australia). As Minister for Health, Ms Plibersek holds overarching policy & coordinating responsibility for issues pertaining to the portfolio.

I know that I am not the only one with fibromyalgia who has been or is being discriminated against. Discrimination, be it as obvious as my situation or less so, is not something we should tolerate. We have to do our part to make healthcare providers & the government aware of fibromyalgia & the seriousness of this debilitating disease. We should not have to tolerate people & situations which in turn, make our disease worse.

Our project involves demonstrating how ordinary people working together WILL achieve positive change: WE are the ordinary people; and we are encouraging our government to establish effective protocols for the treatment of Fibromyalgia.

In a perfect world, fibromyalgia would be a condition that, with diagnosis, would allow us to have better working conditions & additional time off, if needed. Not that long ago, chronic fatigue syndrome was a condition that was considered ‘all in the mind,’ instead of a real medical condition. Unfortunately, that’s where we are with fibromyalgia. Employers, no matter how many employees they hire, should be accountable for their actions if it exacerbates our condition or adds other complications. We have to join together to

As such, should we want to take our awareness campaign to a federal level, Ms Plibersek is the person to contact. Additionally, in her first speech, Ms Plibersek spoke of her strong interest in social justice and her conviction that ordinary people working together can achieve positive change.

Every single time that some-one signs this petition, Ms Plibersek will receive an email. If she, like so many others, has never heard of FM, she will now! Once you’re done, please ask your friends to sign the petition, or share it on Facebook, as well. Grassroots movements succeed because people like you and I are willing to spread the word!

What You Had To Say

Personally â&#x20AC;&#x201C; personal accounts of FM battles

I can so relate to Julie Raworth's story in the article titled "Personally". I too am a psychology major with an emphasis on Life Coaching. I should have started my college studies in psychology decades ago, yet life had a different plan for me at the time. Anyway, I have a HORRIBLE time trying to stay concentrated on what I am reading, I can hardly focus on the written word and would much prefer to hear it instead of reading it. I have FM and astigmatism which makes it all that more difficult to stay focused. The other ailments that are mentioned in this article [neurodiversity and Irlens syndrome] I have never even heard of and I will be looking into them in more detail. I tend to have more of a problem with the spoken word instead of the written word, although I do find that even when writing I find it difficult to think of the proper word to use. I will know the word but it just will not come to me, this happens with speaking and writing and is VERY frustrating. I found it reassuring to read about someone's life that seemed similar to mine. I have been working on my Bachelor's Degree in Psychology since 2009 and with some hard work and perseverance; I should graduate by the end of the 2013 Semester. Thank you so much for sharing Julie's story, it was so heart-warming and timely for me. Sandy

First just want to say congratulations on your brilliant newsletter! Just seen it thru the FMS email. That's amazing you've got all that info. And done all that work to put it together. Manda Great issue - so many resources and interesting articles that explore many different topics. Elissa

BUTTERFLY - Melissa A. Hernandez Delicate as a feather and strong asâ&#x20AC;Ża tree your story and journey has always amazed me. You grow from a larva so tiny and small and eat and eat and eat until you can't eat at all! Into a chrysalis you retreat for a nice long slumber and then you emerge full of beauty and wonder! â&#x20AC;Ż

There is nothing in a caterpillar that tells you it is going to be a butterfly. - Richard Buckminster Fuller

Personally â&#x20AC;&#x201C; personal accounts of FM battles

Introducing...Fibro For Men I have had pain & fatigue from Fibromyalgia since 1998. It started with pain in my lower right side around the ribcage. It was misdiagnosed as a bad gallbladder after 1 1/2 years of needless medical tests. I went through gallbladder surgery which did not help the pain that was now all over my right side including my hip & back. I was sent to specialists & surgeons for more tests which were all negative. I was about to give up when my mother who has Lupus talked me into seeing her doctor. After the blood work was drawn & I showed him where the pain was he did some trigger point testing. Then a new word that has changed my life forever was spoken to me for the first time. He said "I think you have Fibromyalgia." When you first hear it, you are scared but happy that they now know what it is & maybe they can fix you. Not so much. I was put in pain management after diagnosis. After diagnosis things change, you are not a priority to the medical field. You are just a person with some form of incurable something that will not immediately kill you & they don't know how to help anyway. I found myself in a sort of vacuum, I knew what I had but did not have the information I needed to help myself. I was desperate for any answers or information but everything I found was geared for middle aged women. Talk about confused....here was a guy in his middle twenties feeling like he was eighty & being told he has a disease that only women get. What do you do! By this time getting the strength to do anything took an act of congress. It was day by day & I had to plan way ahead to get anything done. Then one day a chance conversation with a complete stranger changed my life again. She asked me if I felt OK. I told her what I had & she happened to have Fibro, too. She went out to her car & gave me a book: Fibromyalgia & Chronic Myofascial Pain - a Survival Manual (2nd Edition). She told me to read it, learn from it, call her to return it, & then pay it forward to someone else with Fibromyalgia. That is why I created Fibro for Men. I started Fibro for Men to help men with Fibromyalgia & their families or friends learn about symptoms, treatments, support structures, & other males that have this disease. I wanted there to be a site for men so they would not have to feel the confusion and loss I felt when I was searching for answers. The response to my site has been positive. I am now in the middle of a campaign to put faces on our disease to show we are not invisible. The more people participate, the more visible we become to the medical world & the political world & the less they can ignore us & our disease: The VISIBLE ARMY - http://fibromodem.wordpress.com/the-visible-army/ My Support Network My biggest support would be my wife Cheryl, without her I could not function. I have one sister who is Bipolar/Schizophrenic. My parents live about 20 minutes away, & are raising my wonderful niece, who is learning about the disease. I have one nephew, who is very supportive &, is more like my little brother since my parents raised him, also. I have my

FM PROFILE 13

Personally â&#x20AC;&#x201C; personal accounts of FM battles

extended family of Aunts, Uncles & one grandfather still living. My mother, Regina has Lupus & some symptoms from Fibromyalgia so we support each other. My father, Henry is very supportive & I believe would trade places with me if he could because it hurts him greatly to see his son in pain. My close friends would help me at the drop of a hat. I have not felt the same support outside of this group. My friends at work are uneasy about the disease & some have told me they do not believe it exists. One friend's wife is a nurse & she told him that Fibromyalgia is everything they can't diagnose lumped together so it is not real. I am very lucky to have the support I do.

What has Helped Me Guaifenesin or the Guaifenesin Protocol. It gives me energy & relieves symptoms. I do have to use some pain management (Hydrocodone) when my flares get too bad, usually during changing weather systems. Things I Like to Do I was raised in the country & I love being outside: hiking, kayaking, fishing, hunting, swimming, watching wildlife, raising chickens; spending time with my family. I love being around other people & can find common ground with most. https://www.facebook.com/FibroForMen

Advice for Other Men with Fibro 1.

Don't be too macho. As men we are expected by society to shrug off pain & move on, but what do you do when the pain does not stop. Seek help, find out what's wrong, your pain could be something worse. Make sure to get diagnosed. 2. Search for new information on treatments & options for your pain & fatigue. 3. Listen to your partner, friends, or family. They see you in pain & want to see you feel better. 4. Don't lash out at others for their ignorance about the disease. A lot of people can't understand what they can't touch, see, or hear. It may take some time for them to understand your condition. Sometimes I find myself hurting so bad it is easy to yell or snap at someone, I have to reel my emotions back in when this happens. 5. Realize you will lose friends & possibly loved ones over this disease. It is hard sometimes to make people who are close to you realize what you are going through. They may see it as you are complaining too much & besides all the tests have come back negative, right? Wrong, there is something very wrong & to be a true friend or loved one would be to listen to the person who is hurting. At this point you must focus on yourself, to get in a better state. If you are used to balancing a lot at work, home, & outside, someone else may have to tend to some of those chores. With this disease you must find your inner light, that feeling inside that gives you self-worth. It will be your guide through the tough times because sometimes that is all you have. 6. Focus on what pulls you through. Whatever has helped you through tough situations in your life before & until this point. 7. Try new things. Try faith, meditation, acupuncture, massage, organic foods, alternative medicine, & anything else that might make you feel better. Just make sure to get totally informed on what you are trying. 8. Go at least one time to your local support group. It will be mostly women & you may feel like you don't fit in. Participate & ask questions, if you take away just one bit of knowledge that can help your suffering, the trip was worth it. 9. Find a Physician who treats patients with Fibromyalgia, Lupus, or Chronic Fatigue. Your regular doctor will not be of much help, sometimes they are starting off where you are.....having to collect information on the disease to try to treat it. Going to a doctor that knows makes all the difference & can put you ahead immediately. 10. Support Fibromyalgia Awareness anyway you can. Join your groups online, spread awareness because you are not alone - there are millions who need help.

Neat NAET

Personally – personal accounts of FM battles

Fran Elliott lives in Park Orchards, Melbourne, with her husband, Jeff. Together, they convert vehicles into wheelchair access passenger vehicles. They have 2 teenage kids and two deer hound puppies.

I was diagnosed with Fibromyalgia in October 2010. I have tried changing my diet, rehab (which worked for a while) physio, myotherapy, Bowen therapy (I get a bit of relief with this) but nothing was really helping. I may have Fibro to a lesser degree to some people and the reason I say this is I am still able to go to work. Now whether that is me being very, very stubborn and not giving in or the fact that I don't always have pain - I am not sure. After having a bad flare up, I went to see my Bowen Therapist and she does what she can to help me at the time, she also mentioned about a treatment she was undergoing for something completely unrelated. It’s called NAET and she said: Fran, I think this could work for you. Me being me, I put it off for a while and then I decided ‘oh well what have I got to lose, I have tried everything else I can think of and that has been suggested to me.’ I want to share with all who read this awesome newsletter what NAET is and how it has helped me...

NAET is a treatment that started in America – the initials stand for Nambudripad's Allergy Elimination Techniques. There are practitioners in Australia and the UK (Over here they are

not allowed to say it eliminates allergies for legal reasons) So, there I am I am looking up all this information on it, thinking that I don't have any allergies and how is this going to help. Well, guess what, guys? It works out that I do have allergies to foods and they are not helping my fibro. The treatment is not painful: there are no needles or anything put on your skin for a while to see if you have a reaction. It is purely having everything tested using Kinesiology. My specialist Maria takes a photo of your eyes and reads them using iridology techniques. She uses the information from the photos and the background information that I have given her to treat me. I am about 2 months into my treatment and already I am starting to have less flare ups. So far I have been treated for sugar, eggs, lactose (I knew I had an issue with that one!) and we are working on grains and wheat at the moment. Wheat, gluten and some grains can contribute to fibro flare ups but, with this treatment, it will mean I can eat these items if I choose to and not have to worry about having any pain etc. It can be frustrating how long it can take to pass some of these substances but it just means it’s a really big issue for your body.

NAETÂŽ was discovered by Dr Devi S. Nambudripad in November of 1983. Nambudripad's Allergy Elimination Techniques (NAET) are a non-invasive, drug free, natural solution to alleviate allergies of all types and intensities using a blend of selective energy balancing, testing and treatment procedures from acupuncture/acupressure, allopathy, chiropractic, nutritional, & kinesiological disciplines of medicine. One allergen is treated at a time. If you are not severely immune deficient, you may need just one treatment to desensitize one allergen. A person with mild to moderate amount of allergies may take about 15-20 office visits to desensitize 15-20 food and environmental allergens. Basic essential nutrients are treated during the first few visits. Chemicals, environmental allergens, vaccinations, immunizations, etc. are treated after completing about ten basic essential nutrients. NAET can successfully alleviate adverse reactions to egg, milk, peanuts, penicillin, aspirin, mushrooms, shellfish, latex, grass, ragweed, flowers, perfume, animal dander, animal epithelial, make-up, chemicals, cigarette smoke, pathogens, heat, cold, other environmental agents. It may take several office visits to desensitize a severe allergen.

I am finding after going through sugar which, for me, took 8 treatments, I feel loads better: I have lost some weight and when I have a flare up I know what has caused it. Itâ&#x20AC;&#x2122;s as though now that I have passed one or two items, I can pinpoint the trigger better now. With me, stress is a big factor and unfortunately, while I still work in a stressful job, I will continue to have flare ups, but I now know the difference between having a flare up caused by stress or by something I have eaten. I am not saying this treatment is the magical cure we have all been looking for all I am saying is if you are stuck, give it a go - it might just help to make it less worse for you. I know it has helped me.

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NAET utilizes Muscle Response Testing (MRT) which indicates kinetic imbalances in the body caused by allergens. It is safe for everyone from infants to the elderly. The best part is that the program is pain and side-effect free!

Research News Music Therapy Relieves Fibromyalgia Symptoms and Improves Patients’ Quality of Life

University of Granada researchers have shown that music therapy combined with other relaxation techniques based on guided imagery significantly reduces pain, depression and anxiety, and improves sleep among patients suffering from fibromyalgia. Thus, this therapy enhances patients' quality of life. This experimental study has shown that these two techniques enhance the well-being and personal power of patients with fibromyalgia. This research study was conducted with patients suffering from fibromyalgia from the provinces of Granada, Almería and Córdoba, Spain. They undertook a basal test at the beginning of the treatment, a post-basal test four weeks after the intervention, and another post-basal test eight weeks after the intervention, at the end of the study. Treatment at home The researchers applied a relaxation technique based on guided imagery and music therapy to patients, in a series of sessions conducted by a researcher. Patients were given a CD to listen at home. Then, researchers measured a number of variables associated to the main symptoms of fibromyalgia - as pain intensity, quality of life, impact of the condition on patient's daily life, sleep disorders, anxiety, depression, selfefficiency, well-being. Then, patients were given the chance to participate in their own treatment.

Fibromyalgia is a chronic condition that affects and conditions patients' social, personal and working life and requires a multidisciplinary approach developed by a team of physicians, physiotherapists, experts in physical activity and sport, psychologists and nurses. According to University of Granada researchers, the art of relaxation with guided imagery and receptive music therapy could be considered effective in the alternative symptomatic treatment of this condition. The low cost, easy implementation and the fact that patients can get involved in their treatment at home are some of the advantages of this technique. Researchers state that "further empirical research studies are needed to address other physiological variables associated with the well-being generated by these two techniques, and that analyze patients' self-efficiency and personal power to get involved in their own treatment. This piece of research was conducted by María Dolores Onieva Zafra, at the Department of Nursing of the University of Granada, and coordinated by professors Adelaida Castro Sánchez, Carmen Moreno y Guillermo Matarán. The results obtained in this study were published in the journal Pain Management Nursing.

Women suffering from fibromyalgia who exhibit perfectionist traits tend to have poorer health than their non-perfectionist peers, according to new research out of York University.

and Health. “For women coping with fibromyalgia, there is often immense pressure to live up to others' seemingly impossible standards and they feel frustration, shame, and high levels of stress when they cannot meet these expectations.”

The study, published by the Journal of Psychosomatic Research, is based on a sampling of 489 women diagnosed with fibromyalgia, a condition that predominantly affects women and is characterized by chronic pain and fatigue. It is the first large-scale investigation of fibromyalgia and perfectionism, and illustrates the toll perfectionism can take on those living with chronic illness.

The study also found no evidence supporting the belief that perfectionism is more prevalent among women with fibromyalgia compared to the general population. However, for the subsection of fibromyalgia sufferers who ranked high in either self-oriented or socially prescribed perfectionism, intervention and behaviour modification are key to ensuring they maintain their health.

Perfectionist Pressure Means Poorer Health For Women With Fibromyalgia

“It is clear that women with fibromyalgia who are elevated in perfectionism have greater coping difficulties,” says Flett. “They should benefit greatly from interventions designed to enhance their coping skills and ability to engage in appropriate self-regulation. Otherwise they will be frustrated by their inability to strive tenaciously, and if they still go ahead anyway, will likely exacerbate their pain experience.” Participants answered questionnaires measuring personality and perfectionist traits, along with overall health. Researchers found that those who reported either self-oriented or socially prescribed perfectionist tendencies (those who put impossibly high standards on themselves, or feel pressure to be perfect from those around them) admitted to poorer health than non-perfectionists. They reported more stress, more difficulty performing daily tasks and higher levels of pain. “Chronic illness is difficult enough, but even more so for perfectionists,” says Gordon Flett, a psychology professor in York University’s Faculty of Health and Canada Research Chair in Personality

The study, “Perfectionism & health functioning in women with fibromyalgia”, was led by York University’s Danielle Molnar, a Social Sciences & Humanities Research Council postdoctoral fellow, working in collaboration Professor Gordon Flett & Brock University’s Professor Stan W. Sadava & research associate Jennifer Colautti.

Anxiety is a normal human emotion that readies the body to take action. It is a necessary emotion that keeps the human body alive. For example, you need a certain level of anxiety to make sure you look both ways before you cross the street! Anxiety is often expressed as irritability or a failure to cope. If people appear to be overly stressed or bothered by the daily hassles of everyday life then they are not coping. Relationships, finances, and workrelated pressures are the most common stressors, so if a friend or family member appears not to be coping then they may need to seek help. Everyday life can be a severe stress! There is both a positive and negative form of anxiety positive anxiety is excitement! Negative anxiety is discomfort, or fear, and in the extreme form, unchecked anxiety can lead to 'panic attacks': individual episodes characterised by palpitations, flushes, a feeling of choking, breathlessness, among many other pretty awful physical sensations. At a physiological level, oxygen raises the physical system up for action; carbon dioxide lowers the system down - with anxiety, you want to increase your carbon dioxide levels. Contrary

to popular opinion, deep breathing will not generally help in the case of acute panic. Instead, you need to cup your hands over your mouth and rebreathe the expelled CO2 to increase its concentration in your body. This is the popular â&#x20AC;&#x2DC;breathe into a paper bagâ&#x20AC;&#x2122; idea. The most common forms of anxiety disorders are Panic Disorder with or without Agorophobia (which is the avoidance of situations that may lead to a panic attack), Social Phobia, Specific Phobia (eg of elevators, snakes, even vomiting!), ObsessiveCompulsive Disorder, Post Traumatic Stress Disorder, and Generalised Anxiety Disorder.

How do you combat anxiety? The first step in anxiety management is to stop fighting it. Increase your knowledge about the myths of anxiety. Avoidance maintains anxiety. Passive approaches such as ruminating and not doing anything to address the underlying stresses in life are passive coping styles and they maintain anxiety. You need to be active. You need to approach anxiety in at least three areas:

1. 2. 3.

By investigating and increasing your tolerance for the emotion By changing and promoting positive behaviours By managing your ‘automatic’ thoughts that are unhelpful and maintain anxiety.

The dominant model at the moment in treating anxiety is Cognitive Behaviour Therapy (‘CBT’). The premise of this model is that your mood follows your thoughts so if you change your thoughts you can change the way you feel. As part of CBT you learn about maladaptive thinking styles and how your mind can get you into trouble. The common cognitive error (unhelpful thought) in anxiety is 'catastrophising'. That is, believing the worst will happen despite evidence to the contrary! In CBT you learn how to use an evidencebased model to challenge your thoughts, and you devise positive actions for behavioural change. You learn how to defuse your thinking and how to bring down your levels of stress, fear and anxiety. You can adopt healthy strategies for relaxation, too.

'Mindfulness' skills - being present in the moment rather than constantly being pulled this way and that - are excellent for the management of anxiety. Mindfulness is a lifestyle change. It involves tuning in to what you are doing, and in so doing, living life more meaningfully. Mindfulness is also about increasing awareness of what you value in life. Living life meaningfully... There are many skills that people can learn to manage their anxiety more specifically. For example, challenging the negative automatic thoughts behind their anxiety and better understanding their 'life traps', the beliefs they carry that tend to get them into trouble. This involves looking at how you ‘filter’ your experience. What are your particular negative filters and how do these relate to how you experience life? Don't suffer alone and don't needlessly. Help is available.

suffer

Breath retraining is a powerful tool for managing acute anxiety. If you learn about and experience your breathing consciously (rather than automatically), you can train your mind by attending to the automatic thoughts as they occur and then continue to anchor your mind through the breath.

Meshea has a unique perspective on FM, having lived with FM her entire life while working in Long-term Care Consulting, which she has used to develop an original coaching concept for those with FM. Each program & original tool has been reviewed by doctors of traditional & non-traditional medicine. Meshea lives in Paducah, KY’s Fountain Avenue Revitalization Area with her husband Darren and their furry son, Rex.

When you have any chronic illness, holidays are usually difficult. This is especially true with Fibromyalgia (FM). Chronic illness, again including FM, is also hard on the wallet, and the holidays are as well! In today’s economy, this is even more so than in years past. With these things in mind, I decided to take a new look at how those with FM could decrease stress this year. I have combined the considerations of stress, energy, pain, fatigue, expense, and what the holidays…and family and friends…are really all about. Holidays involve family visits, big dinners and or parties, and gift-giving. As if those things alone are not enough, they do not “just happen” without a lot of prep-time…a lot of energy, thought, work, etc. We want our homes “company-clean” and decorated. We want to serve everyone’s favourite dish. We want to see the look on a loved one’s face when they open their gift and it is just exactly what they wanted! Healthy people are usually worn out pulling all of this off, let alone trying to do it when you have FM! Nonetheless though, we who have FM perhaps want even more than those who are healthy to make the holidays special; extra special because we know our fibro-life imposes upon their lives, making them also fibro-lives. But with FM, how does one ever pull off the successful holiday we envision? Well, first of all…we do not. We have to accept that in truth picture-perfect-holidays are just that: pictures! Once we have done that, we set some realistic goals, and with some “out-of- the-gift-box-thinking”, we can achieve them! What exactly is this “out-of-the-gift-box-thinking”?

(Shamelessly, the pun is most certainly intended!) I am suggesting that you combine the chores that need to be done and the gifts that are to be given to create a less expenses and less stressful holiday for all! Suggest that rather than buying you gifts, your family and friends “do” something for you as their gift this year! Suggestions:        

Get the house “company-clean” Decorate the house, perhaps even your porch and front lawn, for the holiday Help you brain-storm your own gift list Do your gift shopping for you Help you plan holiday get-to-gathers Prepare dishes for the holiday meals and/or parties Clean up after meals and/or parties Take down and store holiday decorations when the holiday is over

You can also offer your time and services as gifts to others rather than having to spend money or shop! You have to start early in order to give yourself plenty of time, but you could offer to do many things that those who work outside of the home find hard to get done.      

Address Christmas cards Conduct internet research on gifts that they are seeking or need more information about Organize pictures from past holidays for a special, surprise display Clip coupons for grocery items that will be needed for the feasts or for gift items or get coupons from internet sites Send out invitations for holiday gatherings whether by mail, email, facebook, text messages, phone calls, etc Frost and/or decorate cupcakes and/or cookies that others have already baked

These are just a few ideas. Now that I have gotten you started, I am sure you can come up with many more! You might even expand on it! Perhaps weekly you have the time to clip coupons for your very busy daughter or daughter-in-law as a type of “gift that keeps on giving”! Or maybe your grandsons can take turns doing your lawn work for you all year as their gift to you! The possibilities are endless and we would love to hear of any you come up with! Also, we want to know how well our ideas work for you! Please share your fibro-FRIENDLY Christmas results and ideas with us after the holidays! Have a Merry fibro-CHRISTMAS and a Happy, Happy New fibro-YEAR ! Blessings on you and your fibroLIFE! Meshea Crysup Founder/Director of fibroLIFE www.fibroLIFE.org meshea@fibroLIFE.us

It is an interesting concept that we as humans are forever attempting to be someone other than who we authentically are. We read an array of self-help books with the idea of attaining skills enabling us to connect with our true essence. Many of us have read it all before and yet we continue to strive to be that being outside of ourselves. Why would we endeavour to change the essence within when perfection comes from our uniqueness? Society, our peers, upbringing, education and the media gently, yet effectively, drive us to believe we are not quite enough and some change to our essence within is desirable. In actual fact, the opposite rings loudly true. It is no wonder when we are not congruent with our true self, that what we are seeking will never find us. Fortunately, many parents instil the idea of being “you” with freedom of path and choice. From this foundation we may have more confidence in expressing our true self with confidence. Our authentic self is never lost, only hidden. Some ideas I have personally discovered in order to rediscover the true essence within myself are: • •

•

Repeat as often as possible, “I am perfect exactly as I am”. Ask yourself, what did I enjoy as a child? Singing, dancing, writing, public speaking, creating, poetry, carpentry etc. Then reintroduce at least one of these activities into your life. Who knows where it may lead. You may meet new friends or create an innovative business idea from something you actually love doing. Ignore societal views regarding age barriers. Who says you cannot be a famous violinist? Did you know current neuroscience research demonstrates that our brain is plastic and forever changing, growing and learning, irrelevant of age. Dreams are not just for the young! Say what you think and feel (of course, with a splash of diplomacy). It is not your job to tiptoe around others, making them feel comfortable at the expense of your own needs.

•

Allow yourself to be lazy occasionally. There is too much pressure to be amazingly driven and goal oriented. It is okay to do nothing at times, staring into space thinking, dreaming and being vague. This is the present space where connection with your inner voice is sometimes heard. Goals can be considered only once you have heard your inner voice, as there resides your base for building your life. Make choices based on your own dreams. For example, many find it desirable to own a home. Perhaps you would prefer to be a resident of the world and rent in different cities. Maybe you would rather own a business and inject your earnings into a creative idea. Be motivated by your soul not by guilt. We are easily driven off our path through guilt. Guilt is not a good motivator. Guilt is instilled through various means that create a belief system from which we operate in later years. Let us all tame guilt and be free.

You may note a general theme running through the above ideas. You discover you by allowing yourself the freedom to make choices and decisions only for you. It may appear self-centred to approach life in this manner. The opposite is true. People who genuinely love you will be happy you are treating yourself as your own best friend. Your authentic way of life will encourage others to do the same and this will impact on their circles as well.

Don’t ask what the world needs. Ask what makes you come alive and go do it. Because what the world needs is people who have come alive. H.Thurman.

LOOK’S GOOD, HUH? The pranamat is a wonderful acupressure tool for self-healing, relaxation & revitalisation that restores the energy flow of your body. It is a combination of ancient wisdom, bio design & modern technologies. All the materials of the pranamat are natural, eco-friendly products making it the only acupressure mat on the market that can claim superior design, superior quality and ecocomponents. The key element of the pranamat, the lotus, is created in the shape of the lotus flower, a symbol of purity, spiritual enlightenment, creation & resurrection. The placement of lotuses resembles a honeycomb, a natural design that will help to fill you with energy. Acupressure & reflexology techniques can help you to:  increase your level of energy  activate the immune system for faster healing & regeneration  reduce inflammation & pain  improve metabolism & reduce fat tissue; improving skin elasticity & tone  effectively fight depression & stress  help during menopause & PMS, & help improve fertility for both men & women  compensate for lack of physical activity (e.g. plane flights, prolonged travel by car, prolonged work at the computer, illnesses connected with immobility)  it is also a perfect aid for hatha yoga practice & meditations The pranamat is based on the principles of acupressure & reflexology, & works on the premise that the tiny lotus spikes stimulate active nerve centres & intensify the local blood flow & lymph circulation. This reflective action triggers the release of endorphins - a natural pain killer & happiness hormone – that are effective in blocking pain, & producing analgesia & a sense of wellbeing.

Lighting up the Holidays… Cannabis for Stress and Anxiety Diane-Marie Williams was born in Vermont, and raised in the Eastern Townships of Quebec, Canada. She is engaged to Michael Dussault-Jensen (the most wonderful man in the world). Diane-Marie was diagnosed with fibromyalgia in 2010. She is mother/stepmother to 4 daughters and a son, and grandmother to 3 beautiful grandchildren (a grandson and 2 granddaughters).

As sounds of holiday music begin to fill the department stores, that inner child in us is awakened to the anticipation of the holidays which will soon be upon us. Yes, it’s that time of the year again. You know, the season for get-togethers with family & friends. Of course, there are also days of planning, over-scheduling & last minute shopping for the unexpected dinner parties to contend with. If you’re anything like me, you’re probably still running around under the gun until the very last moment…often running around in circles. Living with fibromyalgia can be challenging, such things as stress & anxiety can bring on aches & pains, indigestion, migraines & a vast array of ailments. What should be a season that brings out the best of us, more often than not can get the best of us. Having been raised to rely on Mother Nature & her gifts of healing plants, prescription drugs have never been an option for me. Diagnosed with fibromyalgia a little over 2 years ago, I found myself forced me to find alternatives to the status quo of prescription drugs to relieve some of that stress & anxiety that sends my body into total muscles spasms, adding to the migraines & IBS (Irritable Bowel Syndrome)….& the list goes on. As a medical cannabis patient, my preference of course is cannabis. It is the only medicine I found that did not have any side effects. Matter of fact, it was the only medicine I had found that left me feeling upbeat, encouraged & capable of functioning in a high paced day-to-day world. The first evidence of the medicinal use of cannabis is in an herbal published during the reign of the Chinese Emperor Chen Nung 5000 years ago. It was recommended for malaria, constipation, rheumatic pains, "absentmindedness" & "female disorders." Another Chinese herbalist recommended a mixture of hemp, resin, & wine as an analgesic during surgery. In India cannabis has been recommended to quicken the mind, lower fevers, induce sleep, cure dysentery, stimulate appetite, improve digestion, relieve headaches, & cure venereal disease. In Africa it was used for dysentery, malaria, & other fevers. History of Cannabis as a Medicine By Lester Grinspoon, M.D., August 16, 2005

For stress & anxiety, I love my “cannabis tea”, a simple process of steeping a cannabis bud in a cup of boiling hot water & adding a bit of whole milk (important for extracting the THC (tetrahydrocannabinol, the principal psychoactive constituent of the cannabis plant) & a bit of honey. It helps me relax, controls the muscle spasms, reduces the intensity of my migraines (often ridding them entirely) & keeps my digestion system on track & gives me the energy to accomplish the daily tasks ahead. A Sativa strain works best for me in the day. It gives me a feeling of well-being, energizes me & helps me to better focus on the tasks at hand. It’s also known for increasing creativity & fighting off depression, the latter being something we often experience living with persistent or chronic pain. In the late

Lighting up the Holidays

afternoon or evening I opt for an Indica strain, better known for its benefits as a pain reliever & muscle relaxant, in addition to relieving spasms, headaches, migraines, anxiety & stress. It also helps me sleep through my night & we all know the benefits of a good night sleep. Recipe for Cannabis Tea    

Start with 0.5 grams of high quality bud, finely ground. Add 1 tbsp. of unsalted butter to 4 oz. of whole milk. Add the herb to the milk/butter mixture. Simmer the cannabis/milk/butter mixture stirring occasionally for 5-15 minutes (the longer the better) until the bud in the mixture is brownish in colour.  Add 4 oz. of boiling water to the mixture. *Sweeten if desired. I use honey but you can use whatever you choose as a sweetener. Another alternative is adding a bit of mint tea or other flavoured tea that you may enjoy.

Of course, there are many other methods of using cannabis to relieve stress & anxiety. Some may choose to smoke it, in a rolled form or by using a pipe. Some prefer using what we call a vaporizer where you inhale the vapors from the heated cannabis. You may decide on its edible form in the all popular “magic brownie” or any other favorite recipe you may choose to add it to. There is the ever growing in popularity method of juicing cannabis or eating it raw. This is by far my daily pick as it gives me relief without the “stone” or “buzz” you get from heating the cannabis thus activating the THC. You simply use the cannabis plant in its “raw” form in fruit smoothies, in salads & many other creative culinary dishes. However, cannabis may not be the first choice for everyone & for those who would still like to find some kind of relief from the stress & anxiety that accompany the holidays, there are many options out there as an alternative to pharmaceuticals. Below are a few suggestions that you may find work for you. Eating the right foods   

A healthy diet consisting of fruits & vegetables, as well as vitamins & minerals helps in maintaining the body’s physical health as well as mental health. Cutting back on caffeinated beverages & foods containing caffeine that are known for inciting anxiety & making one feel high strung. Using herbs in a tea form such as chamomile (brew 2-3 tsps per cup of boiling water), hops (½ tsp per cup), passionflower (1 tsp dried leaves per cup) or catnip (12 tsps per cup) are great alternatives & can all be found at your local health food market.

Aromatherapy As the saying goes…a nose knows. Aromatherapy is one of the fastest growing natural ways to reduce stress & anxiety. Oils of basil, lavender, anise, peppermint & thyme are some of the most popular choices. A few drops in your bath or in a diffuser can make a world of difference. I like to put some in a vial or on a small cloth that I carry around with me & breathe in its scent deeply whenever I feel anxious to help me relax. Lavender & peppermint seem to work best for me.

Lighting up the Holidays

Music Ever notice how a song can trigger a memory. Making a CD of your favorite songs, whether it is from a special time in your life, a childhood cherished memory, the sound of ocean waves or nature. Surrounding yourself with music that calms you while at home, in the car or at work is always a plus. Choose to listen to it while making dinner, while in the bath or in the evening instead of television. Creating an environment that allows you feel at ease & relax will allow you to be more productive. Remember, the holidays are meant to be enjoyed & that means by you too. Happy Holidays! www.momsformarijuana.org RECOVERY - Melissa A. Hernandez The road to recovery is twisted and long but you'll only make it if you are determined and strong. On your journey you may come to find a fork in the road or a mountain to climb. The distance is not short and very dreary; as the days dredge on you will become weary. But you mustn't stop or go back to the start; you must press on and be brave and strong of heart. Nothing worth it comes easy, and with everything a price must be paid. But it is only you who can be the one to decide if you travail, or stay in bed and hide. The road is hard and the journey is frightful; but with courage and strength, the adventure can be delightful. The people you'll meet and the places you'll go... all of them you may never have known. So take it all in as you travel along; with a skip in your step and in your heart a song. Be not ungrateful for the challenges you face, as they are opportunities for you to overcome either with failure or grace. Do not face them discouraged or blinded; be ready to conquer, open hearted and open minded. Learn from each challenge the lesson it teaches; for then the power you gain will take you far beyond your reaches.

Lighting up the Holidays

Every day I watch you in pain, I see you cry again and again, I feel so helpless in your fight I watch you suffer in the night. I see the sadness in your eyes As you begin to realise That you can’t kick that ball And you can’t stand that tall. I hear the words from your lips I watch you curl your finger tips As emotion runs through your brain And angry feelings you contain. Whether you celebrate Christmas, Hanukkah, Kwanzaa, etc. this is the season of GIVING and RECEIVING. There is nothing better than receiving the love and support of your partner.

I hear your moans and your cries And then I hear you speak your lies Don’t tell me that you’ll be ok The pain isn’t going to go away. Our world was turned inside out We both want to scream and shout But you are my only and my one And when all of it is said and done I will hold you close to me And you will be the first to see That I am here and going to stay Each and every painful day.

by Emma Avery

Lighting up the Holidays

Wish

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Lighting up the Holidays

Dreams, Goals, Adaptations & Plan 15M Elissa Tomasini is a Health Coach. She has struggled with chronic pain & fatigue since 2005, overwhelmed by the pain, the uncertainty and limitations. Gradually, a shift in her understanding and beliefs about herself and her body allowed her to see how the quietness brought many blessings along with the struggles. Elissa lives in Oregon with her wonderful and supportive husband, and two daughters.

I absolutely love making goals & creating plans. It inspires me to dream & make positive changes to my life. I can take time to reflect on what in my life is or isnâ&#x20AC;&#x2122;t working, & look at ways to move in the direction I want for my life.

I find that making goals in life works best when it starts with listing out my own values. This gives me a framework for deciding where to invest my time, & when it might be best to change a course. Because my values are also about relationships, this helps me to include people in my goals, not just concrete goals around accomplishments. I include values of self-improvement & character traits I aspire to. Though these may not be as measurable, my personal integrity is more important than the accomplishments I make. I have a list of seventeen top values that I have revamped over the years. My overall mission statement is: I will strive for growth, healing & deeper spirituality, where I can truly love others, giving joy, grace, & peace to those I meet. Some of my values include building strong relationships with family, friends & neighbours. Others are about personal traits such as saying I am sorry, being forgiving, having fun & living a life of

integrity. I also include fitness & health, making a difference, being financially secure & helping people in need. Next I start with a free-write (brainstorm) of goals & hopes of what I would like to accomplish. This might be short term or long term ideas, as well as selfimprovement type of goals. I try to avoid thinking too rationally when writing out my dreams, as this is something I will do later. For some, this might be better done by writing in paragraph form visualizing the life they wish to have, others prefer lists. It can sometimes help to look around at people you admire, & what are the traits & actions that draw you to them.

Once I have a list of goals & dreams, I begin to group them into categories & time lines for further evaluation. I will group together health goals, relationship goals, spiritual, personal trait goals, finances, etc. With each group I will think about what I can do in the next year to make progress in this area. For relationship goals it might be scheduling dates with my husband, planning some vacations &/or having a game night. For health goals it could be losing weight, going to a new doctor, trying a new exercise &/or meditating self-compassion.

One thing to remember with goals is that it is about progress, not perfection. In 2012, I had a list of about 40 goals & I accomplished about 60% of them. Some of these goals were minor, such as putting pictures in frames & going through donations. Other goals were more significant like starting my blog & going back to yoga class. I never did finish doing touch-up painting around the house, but I am okay with putting this off another year. I wish I had found the time to create goals with my children, as this is a worthwhile project. Even though I didnâ&#x20AC;&#x2122;t finish everything on my list, I can see that the year 2012 was filled with some new adventures & progress in areas that matter to me. The other goals I didnâ&#x20AC;&#x2122;t finish I can evaluate whether this is something I want to reconsider in the next year. Fortunately, 2013 brings new opportunities. I am excited for what 2013 can bring & my personal goal of implementing the 15M plan. For 2013 I am going to focus more on making life style changes in increments. The 15M plan allows me to make progress even in the more difficult health days, as I focus on spending 15 minutes on the desired activity each day. Often when I am tired or feeling a great deal of pain, I lay on the couch a good part of the day & isolate. If I can focus first on 15 minutes of some type of exercise, it is a goal I should be able to attain most days, resulting in less discouragement & better health. When I am feeling good, I will most likely do more, but on a bad day this can help me shift gears. I will add other areas that I want

to progress in such as writing, family time, cooking & doing chores. Like many of us I have goals for improving my health in 2013. I plan to do some experiments with the types of food I eat to see if they may be adding to my symptoms. I also will be doing health coaching for other people who want to improve their health. I hope to be able to make an impact on people struggling with chronic health problems & to give hope. I want to strive for more consistency in my life, & learn to work around the tough days. Making goals can be a simple process or something you spend weeks processing & planning. The most important thing is to make some progress. Taking 15 minutes to write down 10 goals is a great beginning. For the artist among us, one can draw or clip out pictures from a magazine instead. You can post the list on your refrigerator or bathroom mirror.

Others may prefer to spend some time evaluating last year, writing out values, & creating a detailed plan for 2013 like I have done. Finding a buddy to share it with might help keep you motivated & encourage a friend at the same time. May 2013 bring you some great learning experiences & opportunities. May you see an impact towards the values you hold dear & be an encouragement to those in your path. Elissa Tomassini also writes a blog about managing chronic pain with resources & support, and information about health coaching: http://chronicpainjournals.com/

One of the major symptoms of FM is the fatigue, and this makes major celebrations, such as Christmas, New Year’s Eve and birthdays especially difficult; even more so, if you the host. Even if you are just a guest, coping with major celebrations can be hard – here are a few hints and tips that will, hopefully, help you to enjoy things.

Take it Slowly Plan any major celebrations as far as possible in advance, and do a little of the preparation each day or each week, whether it’s planning the whole thing as the host, or just sorting out what to wear and how to get there as a guest. For example: I love decorating and I took on the responsibility (or fun, depending on your point of view) of planning my brother’s 40 th birthday (family) afternoon tea. I downloaded and printed many of the decorations but they required some extra work, like cutting, gluing and assembling. I did this over a three week period so I wouldn’t be too tired for the actual party. (After the party was another situation completely, though!) Don’t take on too much – rather than accepting invitations to all the Christmas parties, pick the one or two that you will enjoy the most, and send notes and cards explaining the situation to the others. Don’t feel guilty – just enjoy the ones you do attend. Get as much rest as possible beforehand, so that you are not starting the celebration already tired. If possible, try to schedule yourself so you get a break of a day or two in between parties.

Food and Major Celebrations Most celebrations involve food, and this can be hard work for some-one with FM. While the best food is often prepared yourself, the stress of cooking an entire day’s feast for a large group of people may be too stressful and exhausting. There are a number of ways round this, though:  

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K.I.S.S. (Keep It Simple Stupid!) – keep the food and decorations simple and classy – people are there for the fun and the company, not five-star gourmet perfection. Buy pre-packaged food – many supermarkets have excellent ranges of high quality pre-prepared fresh or frozen food, as well as all those extras like snacks, crackers, biscuits and cakes. These can be bought in advance and then just set up on the day – even if they need cooking this will generally just be a few minutes in the oven. Shopping online and then getting it delivered to your home (or wherever the celebration is) takes away the additional stress of trudging around a supermarket and carrying things home. Make food beforehand and freeze it – prepare food over the weeks or even months before the event. This means that things can be prepared from fresh ingredients (with a side benefit of spreading the costs!) Make it a bring-and-share meal – get everyone to bring their favourite food along (perhaps split groups of people into starters, main courses and desserts or do what my Mommy does - tell the guests how much you like their (for example) potato salad and would they mind bringing a bowl). This means that everyone can be involved, and they may even take their washing up home as well! Get help – pull in friends or family to help out. This can be made to be part of the fun, with music, a glass of wine and an extra chance to chat. Use disposable plates, cutlery, cups and glasses – there are some great ones out there now. While it may seem wasteful, it will save time and avoid washing up just when your body is about to give up! Biodegradable options are available too, so can just go straight onto the compost heap afterwards without having to go into landfill.

Having a Drink Some people with FM find that alcohol makes their symptoms worse. Try having a drink (non-alcoholic) and something to eat beforehand, alternating alcohol and soft drinks, and/or drinking plenty of water before going to bed can help.

Make a Point of Enjoying it This is your day as well as everyone else’s’ – make sure that you enjoy it!

It’s been a long, exhausting day. It’s only 9pm, but you feel like it’s 4 in the morning and you’re ready to fall over. Suddenly your other half looks at you in that way, smiles & strokes your arm, and you know they want to make love, but all you can do is stare back at them in shock.

Do you NOT know how I’m feeling? Decreased sexual interest is not a common characteristic of FM. Nonetheless, a 2003 Brazilian study, involving women in their 40s and 50s, half of whom had FM and half of whom did not, found that the healthy group was likelier to have had a regular sexual relationship in the last six months than those with FM. The FM group members were less satisfied with their sex life, had more pain during intercourse, experienced more fatigue during sexual intimacy, and were less likely to initiate sexual intimacy than healthy women. We already know that FM is more foe than friend. While many of us are too tired for sex, it is the muscle pain that leads to pressure & a squeezing of the pelvic area & lower back that ultimately result in muscle cramping during sexual intercourse. This naturally causes a great deal of discomfort for an individual with FM, making it difficult to engage in certain sexual behaviours. Sex eventually becomes something that is no longer pleasurable (I can’t believe I said that!), but a negative experience. One’s natural tendency is to avoid such physically intimate situations, especially given that one is too tired or sore for sex. So, who can be bothered? Further, taking a toll on one’s sex life are FM medications that decrease libido & a man’s ability to attain or maintain erection. Anti-depressants can also take a toll on one’s sexual functioning. A person living with FM may react negatively to bodily changes, like weight changes & the loss of muscle mass. As lovers feel less connected in the boudoir, their sexual relationship takes a hit (ie: unless they take steps to stay mentally & spiritually connected while attempting to be physically intimate). It’s important to realise that the release of hormones & endorphins, natural opioids, during sex can help to relieve FM symptoms, like pain & depression, & boosting well-being. This double-sided sword is that while sex can relieve symptoms of FM, like pain & depression, FM itself results in a decreased libido, fatigue & pain that hinder the individual’s desire and ability to engage in sexual intercourse.

Maintaining your sex life is vital to your health and well-being. In order to have a healthy sex life, why not try some of these pointers: 

Practice acceptance. Adapt. Make peace with the fact that you need to deal with this condition, and then allow yourself to reclaim your life in every way.

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Maintain a routine that helps you to feel good about yourself – not necessarily just grooming. Sometimes you need to treat yourself to feel good. Take yourself off for a hot oil massage or a manicure.

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Stay physically active, preferably with your partner, as much as possible, as another way to feel better about yourself, possibly boosting your sex drive.

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Manage stress with relaxation techniques like meditation.

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Talk to your doctor about how your condition is affecting your sex life, including any medications that may be at play.

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Arm yourself with information. Become educated about your condition and how FM impacts your sexuality and sexual expression. This is a must in talking to your partner about everything that’s taking place. Being informed can also help to alleviate your lover’s concerns, helping both of you to stay emotionally connected.

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Allow your partner to be more active during sex if possible (Absolutely nothing bad about THAT!)

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Plan for sex after luxuriating in a warm bath or using a moist heat application, both of which ease FM pain, inflammation, muscle spasms, and stiffness.

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Experiment with different sexual positions. There are plenty of activities and positions that are ideal for fatigue; and many ways to avoid painful sex. And have fun trying them ALL out! (see the next page)

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Enjoy each other despite flare ups. Part of this is not being so goal-oriented during a love-making session. Allow things to happen as they can.

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Stay physically connected by just cuddling (unless such is not made possible by allondynia, where the brain misinterprets neutral or pleasant stimuli for pain).

Finally? Don’t give up. It might feel like you’re never going to want to have sex ever again – but that’s the fibro talking, not you. Lust strikes at the oddest moment, and people can have sex in a myriad of ways. So have fun exploring what works best for you. and you’ll feel IT again. And when you do, take advantage of it, and enjoy it! (Please do NOT read the remainder of this section if you are easily offended)

Everyone has times when they are too tired for sex. Sex is often the first thing to go if you or your partner live with fatigue. Most of us are brought up being told that sex is a luxury anyway (unless it's for procreation) and even as adults, we are often given the message that other things are more important, even if that's not how we feel. If you experience fatigue your sex life will change. But that doesn't mean you have to stop having sex. You can start by exploring sexual activities that are easier on your body. If intercourse is top on your list of things you want to get back to, here are positions recommended for intercourse that requires less physical exertion.

Edge of the Bed In this position the partner who experiences fatigue lies either on their back or on their stomach, with their bottom at the edge of a bed. The bed is providing all the support for your body, and the partner who has more energy can either kneel or stand by the edge of the bed and use their hands and arms to create movement between their body and yours. This position is ideal as it allows you to completely relax and you don't need to use any strength, but if you have some strength you can hold on to your partner or move on your own. Being on a mattress creates a little extra bounce, too!

Sitting Sex Positions Sitting sex positions, particularly if you are sitting in a large chair with arms and a back, can also be a good option if you tire easily. These positions don't allow for as much movement for either partner, but they offer more physical contact and closeness. If the person who has more energy is also the one doing the penetration, they can sit on the chair first, and the partner with fatigue can essentially sit down on them, either facing them or facing away. If the person with fatigue is doing the penetration, they can sit in the chair and the other partner can support themselves to move up and down using the arms of the chair and lowering themselves down on their partners lap.

Right Angle Sex Position This position works when the partner with fatigue is being penetrated. They lie on their back with one leg in the air, fully supported by their partner's body (sort of resting on your partners shoulder). The partner with more stamina does all of the "pumping" and can also move your body by moving your leg. This position won't be good for everyone with fatigue, but you can experiment with variations, and pillows. The benefit of this position is that most of your body weight is supported by the bed, but by having your partner support your leg, you get a little more movement without a lot of exertion.

Side-by-Side While Face-to-Face Both partners lie on their side and face each other. The bed or whatever surface you are lying on will support your weight and you can also use pillows behind or around you for more support. This is not the most convenient sex position as you can't always be face to face since your genitals may not line up in such a way to allow for that. But it allows a lot of physical skin-to-skin contact, and eye gazing. It can be difficult to get traction to allow for a lot of movement, but you can grab on to each other and create a kind of gentle rocking back and forth that can be fun.

Exertion on Top This position is usually called the "woman on top" but that's unnecessarily gendered, anyone can be on top, and you don't need a woman involved at all if that's not who you have sex with! In this position the partner with fatigue is lying on their back and the partner with more stamina gets on top of them, either facing forward so you can see each other, or facing backward (in another position with a gendered name, the reverse cowgirl). It's possible to use pillows (under your bum and under your knees) to allow the partner on the bottom to use their hips as much as they can for penetration. But mostly it's the person on top who does all the work. Benefits of this position include the visual "show" that the person on the bottom gets, and also the control that the person on top has. Drawbacks of this position are that it doesn't allow for a lot of in and out movement as your two bodies are pressed together by the weight of the partner on top.

Reverse Exertion on Top This position is also called the ‘Tight Squeeze.’ You may need to start in the doggie-position and ease your way down until you are both horizontal. In this position, the fatigued partner is on the bottom, laying face down. The partner with more stamina (normally the male – but who am I to judge?) has his body weight on top of the other. Benefits of this position include being incredibly close that you can really feel each other’s every move. Further there is “loads of feel-good friction”. Drawbacks include not being able to sustain your partner’s weight.

Spooning This position offers the same benefits as the side-by-side position but here you are facing away from your partner. This position is best if the partner with more stamina is the one doing the penetration as they can grab on to your hips or waist and create a lot of movement without you having to use much strength.

Reach for the Heavens This position is a slight variation of missionary and is a good I'm-feeling-lazy sex position (well for the partner on the bottom at least!). In this position, the lower partner wraps his/her legs around the other partner, who is on top. Then the lower partner reaches up and puts their hands on the wall behind the bed. Benefits of holding yourself still in this position is that it produces added friction.

Feeling a little bit naughty?

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