LIVING WELL with FIBROMYALGIA: March 2014 Volume 3 Issue 1

This Issue How Can I Help

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What you can do for yourself

by Melissa Swanson

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Caring for your Carer Perhaps you need to think about those who think about you!

A Two-Way Road Anita Wheatley explains how we can help others new to our condition.

TEN Questions to Ask your Doctor

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about Fibromyalgia Cyber-Support Amy Mulholland describes the way to exploit a much under-utilised resource for support

Book Review

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INXSible

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Lyn Van Bebber reviews I Have Fibromyalgia/CFS BUT It Doesn’t Have Me

Jade tells you, from her experience, how to help increase disability access within your community

And He Said

Regular Features

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Joshua David says even Superman needs support!

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What I have to Say

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FibroModem Girl

FCK

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Your Say

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POEM – My Mind Fucks My Body

A list of blogs to add more tools to your support tool box!

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Fibromyalgia Awareness Wish List

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Melissa Swanson lives with her husband, 3 cats and her border collie named “Ewe Bet I Can”. email: fibromodem@fibromodem.com

In addition to Fibromyalgia she has 13 of it's evil sidekicks as she calls them.

blog: fibromodem.com

She works full time, is active with her teenage daughters sports teams and is enjoying getting back into the dog world. She enjoys Aqua Zumba and Water Gym classes, her online support group, her facebook page and writing her blog.

Facebook page: www.facebook.com/FMawareness Twitter: @Fibromodem Shop at: cafepress.com/fibromodem

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

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 2012-2014 The views and opinions expressed here are not necessarily those endorsed by FibroModem .

Advertisers Should you wish to advertise a product in this newsletter, please contact FibroModem at admin@fibromodem.com.

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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.

Introducing this issue’s cover girl:

Jenni Ernster I was diagnosed with fibromyalgia about a year ago after a several year journey to find out what was wrong with me. Like all of us, I have my good and bad days, but as a single mother who works full time, I just have to suck it up and keep forging ahead. I am blessed to have a very close friend who is a very talented photographer, who graciously provided this image (and we thank your friend, too).

What I have to say

Click here

then download to your computer from here

then please print

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How Can I Help?

By Melissa Swanson.

One of the biggest complaints that I read about in every support group is “my family, friends and co-workers don't understand me” and that people receive little or no support.

I was one of those complaining: I didn't have the support that I needed from my family and/or friends. They didn't understand. I would put on a fake face and push through whatever it was that I was doing with my friends, girl scouts, volleyball or my Illinois family then go home and fall apart crying, exhausted and in a tremendous amount of pain.

Before we can expect others to understand what we are going through and to offer us support, we need to be educated ourselves.

We need to learn how to support ourselves.

What can we do to help ourselves?   

           1

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Be your biggest supporter!

Be proactive: choose your own team of physicians. Be your own Health Advocate!

Experiment what will work for you - try integrative therapies1: o Daily stretching and breathing exercises o Aerobic exercise; bicycling, swimming, walking o QiGong, T'ai Chi, Yoga o Massage therapy o Myofascial Trigger Point Therapy o Chiropractic Medicine o Psychotherapy o Rheumatologist o Occupational/Physical Therapy o Trigger point injections o TENS units o Acupuncture/Acupressure Learn everything you can about your diagnosis & stay informed with current studies; Eat healthier Minimize stress Exercise regularly (Swimming is wonderful) Use relaxation techniques, affirmations and meditation Practice good sleep hygiene Be positive Prescriptions/Supplements Make time for yourself Rest - don't over-do it and learn your limitations Ask for help

I highly recommend reading Integrative Therapies for Fibromyaglia, Chronic Fatigue Syndrome, and Myofascial Pain, By Celeste Cooper R.N. And Jeffrey Miller, PH.D.

   

Keep your supportive friends/family – Let go of the non-supportive ones.

Join support groups Creating and maintaining a good support system is critical.

Find a positive role model/mentor

There are many online support groups and pages.

Most are closed groups because people need a place they can talk about their problems without judgment from their family and friends.

If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list)

However, some of them are so big that you really don't get to know one another. Often someone will write about his/her pain, exhaustion and/or symptoms; and the next thing everyone is jumping on board, usually in a negative way. I found myself feeling worse. Look for a support group that is smaller, positive, and supportive.

What about our Friends and Family?

Many of us are tired of not getting support and not receiving any understanding so we stop posting anything health related on our personal Facebook page.

How can we expect others to understand what it is we are going through daily if we hide it from them? We need to teach our families and friends to better understand our lives and how to support us.

So how do you support your Fibromite?

A good way for both parties to understand what support means is to either sit down to have a discussion or to create a list of what is expected. First, we (the Fibromite) need to know what kind of support we expect or need.

1. Acceptance - learn to understand that I am no longer the person I was before.

2. Education - take an interest in my syndromes/diseases; learn about my illnesses, prescriptions, pharmacies & doctors (Perhaps watching a short video may help your friends and family understand more.)

3. Learn to live with me: a. Listen without criticizing or giving advice. Be positive. b. Listen to me when I need to vent and express my feelings. c. Ask what you can do to help or just do things to take the pressure off. d. Know the best time of day for me to be active. e. Be flexible with plans f. Be active in my treatment. Help me to keep going. g. Don't take things personally. I might suffer from sudden mood changes. h. Remember, I am dealing with extreme fatigue, daily pain, depression, and mourning the loss of their former self.

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Several letters/articles that have been published that I have found helpful are;   

The Spoon Theory by Christine Miserandino About.com – What's going on? A simple explanation of Fibromyalgia The “Letters to Normals” written by Ronald J Waller

I have made it my mission to tell other Fibromites that they can still live their lives. You need to have a positive attitude, exercise, good sleep hygiene and a daily routine. Most importantly you need to be able to talk to someone.

You are not alone. There is a community of approximately 200-400 million people with Fibromyalgia world-wide. You don't have to go through this alone. Tell your family and friends what you need and find a good support group.

Remember you are a Fibro Warrior ~ Living Life.

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Your Say I just found your pages and just wanted to thank you.

I thoroughly enjoy your humor about this awful disease.

I'm about to turn 30. Diagnosed at 25.

What seems like millions of treatments between then and now with no real relief.

But finding a site like yours makes me smile knowing there are others out there who feel the exact way I do.

Thank you for doing what you do. I imagine it can't be easy at times. But there are many, many people out there like me who really appreciate it!

Kelley, Texas, USA I feel this is a fantastic initiative, I’ve only just become aware of your great effort to make Fibromyalgia ‘understood’, by its suffers, and the world in general!

Congratulations.

Anthony Thanks so much for your bumper Treatments issue (June 2013). I am looking forward to trying out more of the unusual ones very soon.

Karen, NSW, Australia

Email: contributions@fibromodem.com Please include your first name, country and state. Letters may be edited for space.

I would like to see some articles about improving activity/ exercise with Fibro.

Workout tips, pain management tips for post work out and such. I have some things I have learned on my own but would like to see others or a professional opinion. I have yet to find info from a physical therapist who is skilled in managing Fibro patients. Just a thought.

Thank you!

Melissa (We’ll look into it for a future issue. Thanks for your ideas) I have had this condition for 5 years now, some I see much longer and can’t imagine the day by day struggle for everyone. I am happy to be part of this wonderful support group and thankful for your site. There is hope for us all.

Janina, Alberta, Canada I do quite a bit of research on alternative and new medical approach, new breakthroughs. Have you ever thought of adding that type of info?

Heidi, Washington, USA (We’d love to hear from you, Heidi.)

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If we are lucky, we have friends, family and/or partners to help and support us – but do you let them know how much you appreciate them? Love them? Couldn’t live without them? These are our caregivers. (In case you didn’t know, I love you, Mommy! I appreciate you and I can’t live without you!)

Thank You! I really appreciate you, Your helpful, giving ways, And how your generous heart Your unselfishness displays.

I thank you for your kindness, I will not soon forget; You’re one of the nicest people I have ever met.

Carers provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or who are frail & aged.

There are currently over 2.6 million unpaid family carers in Australia, more than 770,000 of whom are primary carers – the people who provide the most care (Australian Bureau of Statistics (2009) Survey of Disability, Ageing and Carers).

You Didn’t Have To Thank you for what you did; You didn’t have to do it.

I’m glad someone like you Could help me to get through it.

I’ll always think of you With a glad and grateful heart; You are very special; I knew it from the start!

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On average carers spend approximately 40 hours per week providing care. It is estimated that carers of someone with a mental illness spend on average 104 hours per week in the caring role (Mental Health Council of Australia and Carers Australia (2000) Carers of People with Mental Illness).

Help and Caring Thanks for doing what you did; You are kind beyond belief; Your help and caring calmed me down, And gave me soothing relief.

Carers often experience reduced physical, mental and emotional health once their caring commences. Over time the effects of caring may intensify. It is also important for the carers to look after themselves.

Carers also need to manage stress, eat well and exercise.

It Doesn’t Seem Enough I want to tell you “Thank you,” But it doesn’t seem enough.

Words don’t seem sufficient– “Blah, blah” and all that stuff.

Please know I have deep feelings About your generous act.

I really appreciate you; You’re special, and that’s a fact!

Caring can be physically and emotionally exhausting. Regular breaks from caring can help relieve their stress and exhaustion.

For All You Do Thank you so much for all you do; You’re truly a delight; When my life overwhelms and does me in, You make everything all right.

The people who care for us often have no choice about their roles. The constant demands of caring and the many changes in family life may bring about a range of feelings and emotions. Some people may feel a sense of satisfaction about being a carer. Others may feel angry and overwhelmed at times. These emotions can be difficult to cope with.

Priorities Thank you… for thinking of me and then wondering how you could help.

Thank you… for doing what you did, instead of being too busy, or just forgetting about it.

Thank you…

For inking me on your priority to-do list, when you have so many other things to do; I am honored; It meant a lot to me.

Thank you.

Maybe it’s time to celebrate and acknowledge the vital role carers play in our lives. Maybe it’s time to say Thank You, I Love You, You’re Fantastic?

You Made My Day I appreciate your kindness More than words can say; The very nice thing you did for me Really made my day!

You could drop over with a fruit platter, home-made meal, cake or a bunch of flowers, just to say hello and acknowledge the great job they are doing. You could write a short note of appreciation and leave it in their letter box. You could give them a voucher for a massage or one from a retail outlet like a book shop.

There are so many ways you can say ‘thanks’ to a carer you know or know of.

Poetry by Joanne Kuchs

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Anita Wheatley is a fellow Fibromyalgia sufferer. As a writer and blogger, sitting and typing on the computer for long periods of time is challenging; but Anita just released her first book Choice for Change: Reflecting More of Him and can attest to what a pain it was to write (literally!) The book is available at Amazon.com, Barnes and Noble, and Family Christian Stores.

Are you suffering in silence?

Do you feel your only purpose in life is to endure pain non-stop?

Pain is real, but it doesn’t have to be a prison. As fibro sufferers driving down the thoroughfare of life, we need to be encouraged not to focus on the potholes we encounter.

Instead, we should look beyond our windshield for opportunities to help others who may be traveling the same road. As we give out, we receive back through encouragement and friendship. By engaging in this more meaningful behavior, not only can one feel better about themselves, but it gives hope. This hope can help us enjoy life more abundantly!

When I became a new driver, my road-side assistance proved to be a friend who was an experienced driver. Realize that there are new drivers on the road who are not as skillful as you when it comes to navigating this course of life. They may be armed with materials to assist in navigating the road up ahead, but that does not take the place of an empathetic friend. Just like a defensive driver, one needs to understand how to anticipate unexpected hazards in the road and be in a position to read the signs they may encounter.

Think about the signs we pass by on a daily basis, but normally don’t give a second thought. When you fill-up at the gas station, what type of fuel are you putting in your tank?

As is pertains to fuel for our body, are you eating properly? Are you nutritionally challenged and need another driver to assist you with healthier choices? This is a lifelong road and we need to take care of our vehicle, our body. As with any trip, one must know where they are headed. The use of a map or GPS will insure you will reach your destination. Likewise, by continually researching and sharing information on your health issues, you will be in a better position of maneuvering your vehicle throughout your journey. Once you place the key in your ignition, examine your dashboard. Is your tire pressure low? Everyone has their hopes deflated now and then. Not to worry because there are ways to get pumped up.

Whether it is through the encouragement of a friend, exercising, or realizing that tomorrow will be a better day, you have the ability to keep your hopes inflated.

As your drive-time begins, be aware of the road signs along the way. For lengthy trips, take advantage of rest stops. In doing so, you will help refresh and recharge your body.

Remember, your life is a marathon and not a sprint. Pay attention to the stop signs along the way. Your body is telling you something and you need to listen. There is no need to place your vehicle in jeopardy and end up out of service.

Like a car with a warranty, if we follow what we know to do we can minimize our body’s wear and tear. By reaching out to others who may be new drivers or lack the knowledge or resolve to manage their illness, you can provide the road-side assistance to others in need.

As you pay forward, you will help others travel this two-way street.

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Please note that this piece of prose contains adult content and may be offensive to some readers.

my mind fucks my body... the days that I don't wake up hurting are the days I feel like I just might be fine. Then... Slowly...and gradually, the pain creeps up. So if the morning went well, breakfast was decent, drive to the city for an appointment, and around lunch time...BAM! the fucking pain is back.

I laugh.

I scream.

I can't cry anymore from this shit.

Wasted these pain tears and now I won’t have none when my grandma dies.

Fucked up.

That’s a mind fuck.

I scream.

"Thank YOU sir! May I have some more!"

Visions of a bullet whizzing past my head, sounds exciting.

Only if you don't miss...

Pushed so far, from this pain. You feel as if you’re suppose to welcome fucking death!

Because finding happiness, with that...doesn't...go away, is killing you slowly.

this

pain

So why the fuck not Git ‘er done!

Because a fucking high, or maybe a couple grand, just for you to spend.

Spend on shit that you like, but you hurt too much to enjoy it.

Mind fuck continues.

It never lets up.

“Thank you Sir! May I have some more!”

FUCK!

by star

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Amy Mullholand is extremely passionate about fibromyalgia awareness. In her off time, Amy loves to spend time with her children & grandchildren. She frequently enjoys the company of her two dogs, who even check on her when she is feeling run-down.

Amy’s son is an MMA cage fighter, and she enjoys attending his matches.

What was conceived out of pure frustration, her page, The Fibro Frog, has grown to something incredible: a place of support, love and advocacy.

Living with fibromyalgia can be a very lonely and frustrating task. Even though we live day to day with fibro, we ourselves don't always understand it. We never know from one day to the next, or even hour to hour, how we're going to feel. Therefore, it's understandable that it's a very hard illness for our family and friends to understand. That can make one feel extremely frustrated, lonely, and misunderstood.

One of the greatest resources available to us is the internet. There are websites that are dedicated to fibromyalgia, as well as blogs, Facebook pages and groups. Although joining one of these pages or groups can help a person to not feel so alone, that isn't enough. You need to interact with the page/group to garner all of the support that you can.

Check these pages regularly. When a page owner or another member poses a question, make sure to voice your response. Allow others to read how you feel about the subject. People sometimes think that if others have said what you would have said, then you don't need to reply.

HOWEVER writing out a reply, whether previously voiced or not, serves a couple of different purposes: firstly, it solidifies that the feelings of others are valid. It shows people that what they're feeling is normal, and that they aren't alone in their thoughts. Most importantly though, it is very therapeutic for a person to write out how they feel. It can help to relieve stress and tension and even help with depression and ill-thoughts.

If you feel the need to vent, comment on the page and vent! Chances are good that others also feel, or have felt, the same frustrations that you are feeling. Releasing those negative feelings in the form of a comment or question will help you to feel not so alone with your problem. It will validate the concern for you, so that you aren't keeping it bottled up to bounce around in your brain.

Do you have some sort of triumph? Maybe something that you're looking forward to or that you're excited about? Post it! Let everyone know. Show people that even if they're few and far between, you still have a reason to get out of bed or out of the house! We all know that victories, no matter how big or small, are something to be celebrated with this condition.

Maybe you've tried a new medication, idea, or trick and it's helped to provide you with a little relief. Comment and let everyone know. It just might be something that someone else hasn't heard about and it could help provide them with some relief, as well. By sharing, you just might help hundreds or thousands of others.

By being an active and engaged user on fibromyalgia websites, pages, and support groups, you're guaranteeing your own support network. The more active you are with others who understand the challenges and frustrations of this illness, the more support you're going to reap in return. Allow us to help you and be there for you. Make yourself available to be there and support others who need you, too.

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Ultimately, we're all in this fibro mess together.

When it comes down to it, we're family sharing a common bond.

We understand, love, and support one another. As the Facebook page owner of The Fibro Frog, I can tell you how excited I get with each new member.

Every person is just one more that we have the possibility to support and welcome into the family. If we don't know who you are or what problems you may be facing today, we can't help.

Let us support you.

Let us know you're here.

See page 22 for a list of supportive blogs & websites

BOOK REVIEW Lyn Van Bebber is an administrator of the Facebook community page fibro(my)algia and the closed group Fibro Buddies on Guaifenesin Protocol.

Fibromyalgia/Chronic Fatigue Syndrome, but it Doesn’t Have Me! I Have

By Chantal Hoey-Sanders This book is so amazing! No matter what level of fibro we each have endured, Chantal's story speaks to us ... validates us ... inspires us to rise beyond the hopelessness ... to once again feel there really IS hope!!

"I am forgotten. I am fragile. So many days, I struggle to catch my breath after standing up. It exhausts me.

STANDING UP EXHAUSTS ME. I need to rest, to lie down flat, just to catch my breath and to replenish my energy. What is wrong with me? I cry and I cry.

I miss the life that has been snatched from me. I am stripped, exposed, and angry. I miss teaching and I miss my students.

I miss my independence and my mind. I feel reduced, dehumanized, pathetic. I feel like a failure."

Written as a journal, Chantal describes her journey from bedridden to better in a way that pulls the reader right into her experience. One cannot help but feel each emotion page by page!

At Fibro(my)algia, we recommend this book for everyone suffering from fibromyalgia and their family and friends as well. If you decide you don’t want to follow this easy to read guide of the 6 steps Chantal took to snatch back her life from fibro, you will have at least experienced the validation most people with fibromyalgia struggle to get from those around them!

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Jade is the Chairperson of a Disability Access Group, and writes about disability issues from a personal perspective at her blog The Chronic Chronicles. She also makes and sells jewellery in her spare time, including awareness items for specific conditions, which can be found at Sparkly Place Jewellery.

A few years ago I joined a disability access group. It consisted of people with varying disabilities, carers and other residents - all interested in volunteering to improve access in the town we lived.

My prompt for joining the group happened after an incident in a shop. It was during the time in my life where my mobility was going downhill quickly, but I hadn't quite reached the point of obtaining a wheelchair. I had rented a mobility scooter from a charity to do some Christmas shopping, and it was first time I'd attempted to do this alone. It was pretty much hell! In every shop, they'd packed the aisles with huge festive displays, and it was bitterly cold. I didn't realise how difficult it was get through doors without them being held open for you and, if you got off the scooter at each shop to open the door, it defeated the point of using the scooter - and it was still very difficult to hold the door and steer the scooter in at the same time!

The final shop on my route was a large national chain-store. The basket on the front of my scooter was filled with shopping. I was exhausted, tired and just wanted to go home.

However, in this shop, the till/register layout was such that it was impossible to get a scooter through - despite the fact that I'd chosen the smallest available. I did not realise this until it was too late and the scooter was stuck. Shopping spilled from my basket as I attempted to free myself, and I had to climb down to pick items up. While I was doing this, shoppers stepped over me as if I was invisible to get to check-out. Even worse, one shopper kindly requested help from the members of staff, but they were all busy staring at me. I then had to crash loudly into various displays to get out. I felt humiliated and angry.

Why would a national shop make it so difficult for wheelchair and scooter users?

After joining the group - we spent a lot of time talking to the manager, until he agreed to change the way things worked. He widened the queuing area, and put a bell at the checkout nearest the entrance for people to call for assistance if it was required. Training was also given to their staff on disability awareness.

I saw change could be made; however, it took a lot of time and energy. Since then I've become chair of the group, and spend a lot of time asking people to just think before they put something in place, and ask if they aren't sure.

It's not always easy - I realised that when I once made a flippant comment to a friend who is visually impaired that I wished all kerbs at the side of the pavement were banned, as they made it really difficult to get about in my wheelchair. She responded that if that happened it would be a nightmare for her, as her Guide Dog is trained to follow them. So sometimes different disabilities do have clashing needs, but there is usually a happy medium!

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Here are some really basic points about access: 1)

2)

Who doesn’t need more SPOONS!

3)

4)

Access is generally about common sense. It's putting a little thought behind decisions and treating people with disabilities like you'd wish to be treated. How many shops have hearing loops systems, but don't turn them on, fix them when they break, or train staff how to use the system?

Most of them, according to my hearing impaired friends.

Access doesn't have to be expensive. Sometimes it's not about knocking the building down and starting again.

Simple changes can make a big difference, i.e. a portable ramp, an obvious way to call for help, staff trained to approach people with disabilities to assist if required.

If someone provides an adjustment, that doesn't end their responsibility. They need to make sure it works, is available, and that people know about it. Providing a disabled-friendly toilet doesn't help if it's used as a space to keep junk, having a disabled parking space outside a shop is no good if the manager parks in it instead; and having sign language interpreters available is useless unless staff are trained to call them when needed.

If a change is being made to a building, or a new establishment or service is opening - it's a really good idea to employ an access consultant. There is such a range of disabilities and issues to consider, and having a thoughtful environment for people with disabilities can boost trade, make it easier for other customers and also may save costly legal action later if you get it wrong.

If disability access is something you're interested in, you could join a local access group, or start your own if there isn't one in your area. If you don't want to get involved with a formal group you could simply write to shops and services where you encounter issues. Often it's simply a case of non-disabled people not being aware of the problems you're encountering.

If you've had to stop working due to your condition, it's a great way to volunteer without committing to specific hours. Letters can be written over a period of time when you feel up to it.

A tip is to always be polite, but firm. While I don't blame anyone for getting frustrated and angry, I tend to find pointing out the problem in a civil manner gets me further than shouting at a member of staff.

Finally - don't give up! Change doesn't always happen on the first attempt, but when it does - it's such a fulfilling feeling when you've helped to make people's lives easier in one small way.

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Were you to ask 10 people if they felt that personal support was important to living a healthy, stable life, 9 out of 10 would say yes. The other person would be just plain crazy.

When asked, people realize its importance; however, most don’t stop to think about it.

Many other aspects of their lives are consciously thought out, planned, and in place - things such as taking care of their body with exercise, their brain with reading, or the needs of others close to them such as children or aging family members.

Personal support involves thinking about our weaknesses, our personal issues, and where we specifically need help. The areas of our lives that I mentioned above often happen naturally. Sadly, so does forgetting about what we personally need.

With a life-altering illness like FMS, thinking about what we need for personal support is vital. Otherwise we may fall into a black hole of despair. It’s far easier to steer clear of that black hole than it is to dig yourself out of it. This is where the first step comes in…thinking about what we specifically need.

For men this can be especially hard. We feel we should be Supermen. We think needing personal support means we are weak, and we feel that is unacceptable. We need to get over that. You have a life-altering illness - it’s only logical you will need to alter your life.

This starts with an honest examination of our personal strengths and weaknesses. Make a list. Don’t view your weaknesses as faults, view them as areas you need help. Everyone, everybody on planet Earth, needs help with something. If you are ashamed that you are just like everyone else on the planet…than perhaps you are the crazy person I mentioned above.

For example, I suffer from extreme fatigue. It’s worse than anyone else I know. It affects my body and my brain. I often forget important things such as phone calls or to make appointments. I often am too tired to drive safely. Sometimes I’m too tired to walk down the driveway to get the mail. What do I really need help with? I need a list of things to do each day so I don’t forget. My wife often needs to drive when we go places. I need her to run some errands that would normally be my responsibility. I need my iPad to keep track of my appointments and remind me of them.

Now, those are hard to admit. However, harder still is that I need to feel useful, I need to avoid isolating myself, I need to say “no” to things I don’t want to say no to, such as favors

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for family or friends. For men, it’s these more emotional, more personal aspects that you will find hard to get down on paper. You have to do it. Without this careful examination, your life-altering illness will take the maximum toll possible. Not only on you, but on your loved ones as well.

Make your own, specific, personal list, and find avenues that will help you. Often, the people you are trying not to burden with things you need, are more than happy to help. One important thing we need to remember is that making life easier on you, often makes life easier on those you love. They don’t want to see you drowning. They want to help keep you afloat. That is what people who love you do! The most troublesome burden you can put on them is denying them the opportunity to help you. So, most importantly, once your list is sorted, ask for help!

Another aspect of personal support is finding doctors who care, who will listen to you, and who will help you. Your doctors will have a huge impact on your quality of life. The internet is full of sites that rate doctors in your area, make use of that tool. Often you can read lengthy reviews of people’s experiences with a specific doctor. This will help you decide who is a good fit. It’s how I found my doctors who, in my opinion, are the best in the business.

To find them, you can check the internet as I mentioned, any forums you belong to, or any people you know. Search around and make a list. Call and make appointments (don’t forget to put them into your iPad). On your first visit doctors mostly want to know how they can help you. This is your opportunity to tell them what support you are looking for. In a pleasant way mention the perceived shortcomings of previous doctors and how you are hoping to be treated by someone in the future. You can often tell on your very first visit if a certain doctor is the right fit for you.

For example, before FMS I used to be a distance runner. Yes, I was one of those “crazy” people you see running out in the rain, the cold, whenever. I was a running junkie, sometimes doing 40-50 miles a week. After the FMS, this was no longer possible. One doctor I went to told me that the reason I’m in pain, exhausted, and can’t run anymore is because I stopped running. Don’t think about that last sentence too much, you will just get a headache. But I knew right then she was not the right doctor for me.

I saw several doctors that were just not a good fit. But in short order, I found ones that were.

It’s a process you must commit to. But the good doctors I have found have changed my life.

The bad doctors I spent time seeing are a distant memory. I suggest this in every article, but think about finding a therapist as well. They can help you figure out what you need. It’s well worth the time spent sorting through doctors to find the right team. If a doctor isn’t helping you, you are just wasting your time, energy, and money. Why would you continue such an arrangement? You have nothing to lose, and everything to gain by finding a successful support team.

You probably didn’t think about it, but even Superman has a weakness…Kryptonite. He doesn’t deny it. He does everything he can to avoid it. But it is a weakness, and when he is around it, he relies on help from others.

So, do you really want to be like Superman? Then don’t deny your weaknesses, find them.

Figure out what they are, get help, and find support. Your own little “Metropolis” will be a much better place.

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FCK

is a directory of blogs that

spread knowledge & awareness of Fibromyalgia: blogs where you can get first-hand information from others who are going through the same experiences. These bloggers educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia.

Alice in Fibroland The authors' stories begin with the story we all know well. But they would rather start with the other side of the story: where the fog breaks on certain, beautiful moments; where new friends, near and far, bring hope and joy; where the things I had forgotten to notice, like my son’s laughter and my husband’s smile, are remembered, treasured, & appreciated beyond words.

Akemi's Heart, and Soul

Mind

Written by Darla, a teacher who is still adjusting to not being able to do things she used to with ease. She writes about surviving her invisible illness...with Love, Laughter, Faith, Hope and a Bit of Wisdom.....

Baking, Butter & Happiness Celeste mixes her FM support posts with luscious cookie recipes and plans for her impending nuptials. Step into her personal headspace – Filled with sweets, puppies, & laughter.

The Chronic Chronicles Created by Jade, a 24 year old female, living with multiple chronic conditions: Ehlers-Danlos Syndrome, FMS, Myofascial Pain, Postural Orthostatic Tachycardia Syndrome, Depression, Scoliosis, Autonomic Dysfunction, EDS-Related Intestinal Dysmotility, Asthma and Dyslexia.

Chronicles of Fibromyalgia From her pain, Leah has found her purpose & shares her journey to inspire hope. Leah seeks not to be defined by what she has endured, but by what she has overcome.

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Family doctor, internist, endocrinologist, another endocrinologist, rheumatologist, dentist then finally FM/CFS doctor...sound familiar? This is a day in the life of a mom living with Lyme disease and Fibromyalgia.

Chronic Invisibility Miss Chronic describes herself as a 38 year old African American Lesbian poet, author, independent electronic music artist/composer, screenwriter and producer/director with PTSD, FMS, Chronic Myofascial Pain, TMD and Plantar Fasciitis (quite a mouthful, huh?) WHOA!

Counting my Spoons

Dawn's FibroBlog

Julie Ryan is counting her spoons and sharing her journey with FMS, TMJ, Endometriosis, Migraines, and Cluster headaches, along with all the various issues that come with them.

Discovering Me: One Day at a Time Jess, a Kiwi living in rural NSW Australia, is a newly diagnosed Fibro Fighter, feeling her way through and intending to write about all the ups & downs that come with it. She is learning to love life one day at a time.

This is Dawn's own experience with FMS. It is her way to share & maybe help someone not feel so alone. Hopefully, Dawn's ramblings of medications, depression, pain, and the like, will not be too boring!

Faith & Fibromyalgia A current, up-to-date resource for FMS news & information; dedicated to compiling the latest breaking stories from all the major online & topical publications, making it easy for you to find the most relevant and best quality news in one place.

Written by Dharshi, a 22 year old Christian in Australia, suffering (but fighting) with FMS: fighting to love God with her limited strength, fighting to find joy in the midst of her struggles; and fighting to hold on to the ability to dream about a future that's better than the present.

Fibrofaery's Blog Chrissy, a 25-year-old lass from south west England, has (finally) been diagnosed with FMS after suffering for the best part of 7 years.

Chrissy (a relative newbie to the blog world) started her blog to vent her struggles, document her progress and share all things that she finds which help Fibro symptoms! She wants everyone out there who’s suffering to know they are not alone! Chrissy is fighting Fibromyalgia, one sparkle at a time!

Fibro Hurts

Written by Phyllis, a 40 year-old mother of 4, dealing with FMS but with a new doctor...She can get through this battle, one day at a time. Join her, won’t you?

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FibroModem Created by Simone, a 40-something Aussie, who has NOT learned to manage this condition so is trying to use her couch time productively by spreading information and awareness of our condition.

Fibromyalgia Michelle has been living with FMS for over 15 years. As she gets older, she is sharing the changes to herself & her body.

Fibromyalgia This: Diary of a Pain Warrior Ana records the development of her warrior skills & strategies that she requires on this journey towards reclaiming her health & rediscovering the joy of life.

Fibromyalgia Companion

Fibromyalgia Odyssey

Firstly, Kirsten does NOT have Fibro BUT she does have over 15 years of experience in three major academic research centers studying chronic pain, with emphases on FMS, TMD & IBS, and of course, the many comorbidities. She gets it.

She knows chronic pain is real & it’s ugly.

Kirsten’s blog is a conduit for evidence-based (well-researched) info about FMS & related chronic pain conditions, pharmacotherapy & alternative therapies, discussion, support, & really anything else we feel like addressing.

Lisa, after living with chronic pain for 30 years, has finally been diagnosed with FMS, and is learning all she can.

Lisa wants to fight the hold it has over her life: with God’s help, her family's support, and lots of friendly advice!

Fighting Fibromyalgia Stephanie is a 25-year-old girl with FMS, CFS, IBS, TMJ, Vit. D deficiency, Bipolar Disorder, Anxiety Disorder, Hypermobile Joints, Gastroesophegial Reflux disease & suspected POTS and EDS. She’s just trying to get by day by day & raise awareness however she can.

Full Circled Me Written by the Barefoot Baroness, who has been sharing & communicating her thoughts for the last 15+ years. BB believes that this has held more benefit for her than any support the medical community could provide.

There is nothing better than shared feelings & experiences with another fibromyalgiac. We seem to know ourselves so well, in tune with our bodies because have had to learn to be.

The Ginger Ginger has made the decision to reject the status quo of negativity & surrender upon diagnosis.

Now she dances with FMS. Every day she mentally flips the bird to the people who don’t want to understand & reach out in love to those who live love out loud & are sweet enough to share a little sumthin.’

Ginger knows who she is & loves life.

PERIOD – no qualifications.

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Fibronaut at Home Published by Susan, who is doing the best she can with what she has & trying to help others in the process; that by writing this blog, she will help not only herself, but others in similar situations.

Fog and Shadows Wytewing writes about her journey with FMS, because it is important to share the daily grind a little & let people know they are not alone.

From the Fog Please join Dave on his journey as he chronicles his life & dealing with FMS. Hoping his written words will brighten the day of a fellow sufferer, or perhaps shine a much needed light on FMS. This is only one man’s tale, and there are millions more to be told so feel free to contribute as you see fit.

Just Another F-bomb Leslie has learned to plan & pace; and to say no… without feeling guilty. It’s been a long road getting here, but it wouldn’t be a life worth living if there weren’t a few glitches here & there now would it?

The Invisible F

LGV

Written by Alisha, a 20something year old writer in the UK, who, besides living with FMS (& depression), wants to raise awareness, to help people understand, to share & engage with all those whose lives are touched by FMS & depression in one way or another, so they know they’re not alone.

Who doesn’t like watching a Xmas tree with the twinkly little lights? Now imagine the same inside your body, the twinkly lights being the aches & pains that you feel in your muscles.

Throw in constant fatigue, disturbed sleep, waking up with more pain than you went to bed with, increased sensitivity to pain, sound, muscle stiffness, mood swings & a never-ending and ever-changing list of triggers: this is Lakshmi’s view of Fibromyalgia.

Does she have all the answers? NO! But she is hopeful of living her life on her own terms. She can KICK fibro in its ass!

Life and Fibromyalgia Friends for 40 years, Heather & Kathy write about life & FMS. Because it is such an individual illness, we can help each other, what works for one may work for another. It can't hurt to learn more about how others live, not just survive.

Living Life as I See Fit Lana shares her experiences because she wants to live a “normal” life & want others to see that it is okay to have a normal life & to keep dreaming, trying, believing & looking towards the future. She writes about her life with RA & FMS, her diagnosis, and her quest to find answers.

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

M.S.erably, Fibrotically, Fabulous!

Rachelle writes about her crazy life but wouldn't trade it for anything in the world. Yes, Fibromyalgia hurts, but she is taking it a day at a time.

My Foggy Brain Tamiko shares her experience with FMS: her ups, her downs, her doctor visits, what she has learned and what she recommends...while trying to remember the words to finish a sentence…YET celebrating life with FMS, major depression & ADD.

My Ordinary Simple Fibro Life! (Yeah Right!)

Bonnie writes about her world, as she knows it, as she lives with Fibromyalgia. As a wife and mother, a daughter and sister, an aunt, cousin, teacher and friend, her roles in life are not always easy, but she does her best while living in pain. Welcome to her journey!

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Oh What a Pain in the...

A no holds barred look at life with pain. Tracy began writing about life with chronic pain, but has branched out to look at all sorts of pain. Pain is Pain.

The New Normal

Pain in the Trek

A mother, a partner, a friend, an activist, a lover & a loom knitter...but now, also, a patient, linking all the information she has found in books & websites, blogs & message boards, in one convenient spot.

Amy is a writer, yoga wellness coach & Reiki practitioner, pursuing a Ph.D. in holistic nutrition. She has found the power of holistic, natural & ancient Chinese healing methods & wants to share them with others, as she continues to learn.

The Retired Bridgeburner Hannah feels that we should all do what we can for the greater good - to raise awareness, to educate the people around us & to let others know that a friend is listening. We all have a voice, and each voice is worth listening to. Never feel that what is inside you & what you have to say are worthless just because people choose not to attempt to understand.

Cathy is about 12 types of awesome, 10 of which she hasn’t quite put her finger on (yet!) It isn’t her goal to change the world or end our nation’s poverty crisis…. but hell, if she could, she would TOTALLY do it.

Seeking Equilibrium Diagnosed with FMS, Rosemary Lee tries to find humor in everyday life.

Sometimes it works & sometimes it doesn't. Rosemary has a new obsession: she is on a mission. She will be finding out all she can about her mystery ailment & using herself as a lab rat - vitamins, diet, yoga & anything else to get rid of the pain!

This is My Life ~ Surviving Fibromyalgia Published by Melissa, a full-time working, mom dealing daily with the rollercoaster ride of being diagnosed with FMS.

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Seeking the Gifts of Fibromyalgia Terri is a recovering Type A personality & struggles with not being as reliable as she once was. Once upon a time, she respected people who were reliable, consistent and great at follow-through. So, there's the dilemma; as a strong woman living with Fibromyalgia, Terri lives day-today - unable to commit to anything because you never know when the Brain Fog will roll in, the aching pain will strike, or the limbs will take an unplanned hiatus. According to her beliefs around who deserves respect, she no longer fits into her own set of 'rules to live by'. This creates a bit of an internal conflict!

Transform your Chronic Life Wendy, a bi-polar fibromite, with a fascination for medical issues & alternative treatment options, lets you know how her experiments with new herbs & essential oil blends affect her symptoms – you might find a whole lot of new tricks to add to your fibro-fighting arsenal!

Voices of Fibromyalgia Haullie and Stacy are dedicated to spreading awareness, news articles, stories, inspirational affirmations, information, life lessons, & resources to those surviving Fibromyalgia via their Non-Profit Website & Facebook community. It is also an extension of THE FIBRO SHOW: an Online Radio Show that airs every Thursday night at 7:00PM (pacific time).

Walking Through Pain A place to read about someone’s life journey...you can make it through tomorrow, despite your hurt & pain! It does not matter how special of a person you are, it does not matter how much money you make or where your house is located. What really matter is what YOU are doing in YOUR life.

Young people with Fibromyalgia (Portugal) (Jovens Portadores de Fibromialgia (Portugal)) This Portuguese blog has two administrators: Joana Vicente, a 24 year-old in pain since she was 11; and, Fátima Figueiredo, a 13 year veteran of the fight with FMS – sharing information about FMS and other co-morbidities.

Este blog Português tem dois administradores: Joana Vicente, de 24 anos de idade com dor desde que ela tinha 11 anos e, Figueiredo Fátima, um veterano de 13 anos a luta com Fibromialgia compartilhamento de informações sobre a fibromialgia e outras comorbidades.

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The Wonderful Thing about Tigger Claire has gone from an adrenalin junkie, running my own business, to a medication junkie battling with FM, M.E, Bipolar & deteriorating eyesight.

She is determined to raise awareness of the effects of physical and mental disabilities, enthuse others in her battle to lead a normal life and keep smiling!

"I love life and life will love me one day.... "

Fibromyalgia Awareness Wish

1 2 34 5

Backless Purple Chaise

available at thepurplestore.com

Although we haven’t chosen to cover it this year, May 12th is International Fibromyalgia Awareness Day.

Events are held worldwide or you could choose to run your own event.

If you are reading this magazine as a hard copy, some-one has made the effort to download and print it for you, so you know that there is support out there for you.

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To keep it free for our subscribers, we publish this quarterly as an E-zine. If you would like to subscribe (for free) please visit our website: fibromodem.com or our Facebook page: Fibromyalgia Awareness Day 2012