Helping a Fibro Frog Stay Dry

Remember I told you about Amy’s predicament?

fibro frogYes, Amy the owner/author of The Fibro Fog blog page – you know the one…voted as one of the top 15 Fibromyalgia blogs of 2014 by Healthline; voted as one of the top 15 Fibromyalgia blogs by Healthline for 3 consecutive years; and certified for medical accuracy by an M.D. through Healthline.

Yes, Amy the owner of The Fibro Frog Facebook page – with 0ver 15,000 LIKES (which should translate to over 15,000 votes, right?)

Yes, Amy who regularly contributes to our e-mag LIVING WELL with FIBROMYALGIA.

Yes, Amy who does all of this for free; who educates and advocates for those that live with chronic pain conditions; and supports people who are suffering with these conditions.

She, herself, suffers with Fibromyalgia, Chronic Regional Pain syndrome, COPD, Degenerative Disc Disease, Osteoarthritis, Diabetes, Ruptured Discs, and IBS.

And, just in case, I’ll remind you: Amy is living under this roof…

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All we need you to do is visit to Amy’s voting page in the nation-wide program called No Roof Left Behind, and vote.

amy 1

amy 5You can see that currently Amy only has 38% of the vote – that’s really NOT good enough. Especially as I just Googled the weather report for her town:

…So, let’s keep Amy dry (the frog can stay wet!). Visit Amy’s voting page and vote now!

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A Frog in a Frying Pan

Do you know Amy? No?

fibro frogOk, then, do you know The Fibro Frog? Ah…much better!

Yes, Amy is the owner/author of The Fibro Fog, as well as the correlating Facebook page.  Her blog has been voted as one of the top 15 Fibromyalgia blogs of 2014 by Healthline, and has received this honor for 3 consecutive years. The blog has also been certified for medical accuracy by an M.D. through Healthline.

She is also a regular contributor to our e-mag LIVING WELL with FIBROMYALGIA.

Next question: Do you know what this is?

This is Amy’s ceiling!

This is Amy’s ceiling!

Stop_SignSTOP! We are NOT asking for donations.

Amy is one of four finalists (in her area) in a nation-wide program called No Roof Left Behind, so all we want from you is a visit to Amy’s voting page and your vote.

Amy’s blog isn’t monetized – it is there to educate and advocate for those that live with chronic pain conditions; and as a support for people who are suffering with these conditions. She, herself, suffers with Fibromyalgia, Chronic Regional Pain Syndrom, COPD, Degenerative Disc Disease, Oseoarthritis, Diabetes, Ruptured Discs, and IBS. She is a single mother, living on a fixed income.

…So, let’s keep Amy dry (the frog can stay wet!). Visit Amy’s voting page and vote now!

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Operation Affirmation

The New Year is almost here – just over one month away. I’m looking forward to putting this year behind me BUT I would really like to start the year in the right frame of mind.

Most people repeat in their minds negative words and statements concerning situations and events in their lives, and consequently, create undesirable situations. Words can work both ways, to build or to destroy. It is the way we use them that determines whether they are going to bring good or harmful results.

Your subconscious mind accepts as true what you keep saying. It attracts corresponding events and situations into your life. So why not choose only positive statements, in order to get positive results?

And that’s where Operation Affirmation comes in…

Affirmations refer primarily to the practice of positive thinking and self-empowerment – fostering a belief that a positive mental attitude will achieve success in anything. More specifically, an affirmation is a carefully formatted statement that should be repeated to one’s self and written down frequently. For an affirmation to be effective, it needs to be present tense, positive, personal and specific.

Over the next 31 days, I will be publishing a different affirmation each day. Say each one to yourself all day long. Write them down, email them to yourself, and post them where you will see them every day. See for yourself that affirmations are a way for us to harness the mind’s power by directing our intentions toward our best selves and our happiest lives.

Love your day, love yourself, love your life! See you tomorrow…

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#SICK Looks Like Me

Lottie 1I was pointed to this blog post from a Facebook group I belong to: it’s by Lottie Ryan of Who’s That Lady For Women With Chronic Illness.

I wonder how many people will try to do this? Or how many will give up (before beginning) and say ‘too hard’? I wonder if it will make me feel better? Or if feeling better will make me want to try it out?

Have a read and let me know what you think…

One thing that Lottie is definitely correct about is that #sicklookslikeme.

SICK

The Revolution

I incite a revolution at the end of this post but you’re going to have to read it to understand the point, so grab a cuppa and dive in…

HAVE YOU STOPPED MAKING AN EFFORT WITH YOUR APPEARANCE?

IS MAKEUP FESTERING IN A DRAWER SOMEWHERE HAVING NOT SEEN THE LIGHT OF DAY FOR YEARS?

HAS ‘MAKING AN EFFORT’ BECOME SOMETHING OTHER WOMEN DO, WOMEN WHO AREN’T LIVING WITH CHRONIC ILLNESS?

If so, then you’re going to get something valuable from this post, but if makeup, nice clothes, looking good and all that jazz aren’t your thing, and are never likely to be your thing, then you might just want to skip to the action in the last paragraphs.

At some point during my late twenties, early thirties, I stopped wearing makeup.

This happened at exactly the same time as I stopped being the real me and stopped valuing myself as worthy.

I’d stopped wearing makeup and fallen into the “I haven’t got the time or energy for that” thing or “No one needs makeup, I’m happy au natural”, which was really code for “I’ve stopped caring about myself, because I’ve forgotten my true value, and I don’t think I’m worth the time or energy”.

I also thought I had to look sick to be sick.

On top of the usual mommy guilt from which we all suffer, I had the added guilt of having birthed my children into a seriously ill situation knowing I couldn’t care for them as I wanted, and as they needed. I turned to my amazing husband (who never fails me, or them) and our parents to help, but with that felt a compelling need to ‘prove’ I really was as sick as I felt.

In addition I noted that doctors take a lot of interest in your appearance and on the odd occasion I’d turned up to clinic looking better presented their exclaims of ‘Oh, you look much better, I’m so glad to see things are improving’, despite my protestations that they weren’t, made things harder, giving me more reason to look sick to prove I was sick.

Then one day I realized I was deeply, heart achingly miserable and I’d started avoiding mirrors or any reflective surface as the sight that greeted me was just too depressing.

I’d become something I just wasn’t inside and if my chronic illness was indeed chronic and therefore for life I just couldn’t continue the rest of my life as the miserable, depressed, pale and wretched thing I’d become.

My marriage and relationships couldn’t survive me being this wretched person either. It was too depressing and awful. Oh, don’t get me wrong, my husband loves me with or without makeup, but there’s no doubt he finds me much more attractive when I’ve made an effort with myself, and why shouldn’t he? I certainly always wore makeup during the time we dated and was not pale and wretched-looking, so that’s not who he fell in love with. Nor did I walk down the aisle without makeup on, so that’s not who he married either.

I Can Change

I recognized that I couldn’t quickly, if ever, change what was going on inside of me but I could change how I presented myself on the outside and thus how I felt about myself.

Though weak, in pain, and truly exhausted there was definitely still a sparkly heart thumping in my chest, intrigued by all things bright, excited by small adventures and so very open to living a beautiful life despite it all. I needed others to see this person and recognize me for who I was despite my illness, and in turn that recognition might just bring me back to life.

The only person who could change this situation was me. I decided to stop worrying about others’ judgements and assumptions and go out shining as I truly am inside; to be authentic and acknowledge that how I look has no true bearing on how I feel.  Doctors and others soon got used to seeing me looking amazing but showing up in all of their tests as the sick person I undoubtedly am.

I went on a mission to redefine what sick Lottie looks like.

To start this, I started wearing makeup.

It was that simple.

There’s a lot of cynicism around make-up and modern beauty standards, but I’m of the opinion that we have this amazing tool at our disposal, to help us feel better about ourselves, so why not use it?

Women fought to wear makeup (seriously…read on)

It’s a fact that women fought hard for the right to buy and wear makeup without shame. It’s a right we sought alongside our right to vote.

Prior to around 1910 makeup was an ‘under the counter’ business, deemed fit only for ‘Ladies of the Night’. In the 1920s women demanded the right to dress and make themselves up as they see fit; relinquishing their corsets, showing their legs and wearing bold makeup with red lips and smokey eyes.

Makeup became widely sold over the counter and worn by the average woman. It has been a tool women have used to express their femininity and create the best version of themselves ever since. It’s an important part of our history and modern being, and I’m a big fan.

Wearing makeup again was just the beginning of my long journey, so if you recognize yourself as similar to the way I was at the top of this story, take hope in the fact that YOU CAN change back, or into the person you really are, with small simple steps that won’t overwhelm you.

Hopefully you’ve read my ‘5 Simple Steps to Better Mornings’ and started doing them. I know they seem ridiculous in their simplicity, but this is where I started and if my personal journey is anything to go by these simple things might just lead you to various adventures of a lifetime.

From Pilled Up to Pinup

If someone had told me 6 years ago when I started this journey that wearing mascara would be the start of my journey towards becoming a published vintage pinup model I would have laughed in their face and told them they were being ridiculous. I, a woman in her early thirties, mom of two toddlers, with BOWEL disease, fluctuating weight due to steroids, and a future filled with abdominal surgeries could not possibly be a vintage pinup.

Yet here I am:

lottie 2

Let’s Start A Revolution

Start small. Start today and then start dreaming about what you really want in your life, as these small steps WILL lead you somewhere great if you take action.

You can read my stories, my suggestions and my ideas all day, every day, but nothing is going to change unless YOU TAKE ACTION.

So, I want your help to start a revolution.

I want to change the way sick is viewed by people. In the 21st century people can live with a chronic illness and look fine. I could be in hospital almost dying and still look pretty good with my makeup on and my hair done (in fact I have been, much to my nurses’ amusement). Judgements based on looks are outdated, unhelpful and need to change, and I need your help to change them!

Go and ‘put your face on’, that beautiful face that mirrors your heart not your illness, and head out to shine despite it all, but first take a selfie – yep, I’m for real.

Lottie 3

We’re going to document this, and start a revolution at the same time. There’s power in a hashtag don’t you know?

When you’ve taken your selfie post it on Twitter/Instagram/Facebook with the hashtag #sicklookslikeme, then post it here in the comments too or, if you’re shy, come into our Facebook group and post it there, until you build your confidence to perhaps post elsewhere.

Are you in? I hope so as I can’t bring about this change on my own. This is all about team work and I want YOU on my team.

You’re never alone.

Lottie -x-

PS This is not a one-off, thing. I’m going to use this hashtag and work on this revolution for the foreseeable future. There’s work to be done! #sicklookslikeme

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What’s the Deal with Fibromyalgia?

This piece has been re-blogged from ProHealth and authored by Sue Ingebretson (www.RebuildingWellness.com).

Have you ever been asked, “So, what’s the deal with fibromyalgia? What is fibro, really?”

When you’re asked, what do you say? Do you have a clear, concise spiel that gives the facts or a printed list with need-to-know bullet points?

Nope, I don’t either.

Sometimes when I’m asked, I’m in the middle of doing something else. It takes me a moment to switch gears into educator mode. Other times, I feel that the person asking the question doesn’t really want to know facts and figures. There’s more going on than what meets the eye.

Our answers about our personal health challenges really depend on who is asking. And, our answers change based on how they ask.

So, I have a suggestion for you.

Print out the following letter. Keep copies handy for the next time you’re asked questions about fibromyalgia in general, or even about your personal health challenges. This letter covers all the bases, yet gets some very important – and personal – points across in a non-technical and relatable way.

I hope you find it useful, and if so – please share!

You can download a printable copy of the letter HERE.

Fibromyalgia?  Because you asked…

Dear Concerned,

You’ve recently asked me about fibromyalgia and I’m sure you’re wondering what all the hype is about. While most people have heard of it by now, that doesn’t mean they know what it is. There’s a lot of conflicting information out there and it can be confusing.

After all, if everything you know about fibromyalgia comes from what you see on TV, you might believe I should be out rowing a canoe, gardening, or opening my own bakery and sweets shop. But, instead, you see me not feeling well and not participating in activities that are too taxing or stressful.

To clarify my response, I’m providing it in this written format. It’s my way of making sure I don’t leave out anything important.

Here’s what you need to know…

Health conditions in general, are classified as either diseases or syndromes. Diseases have a specific, definable, biological cause and have a specific set of symptoms. Health conditions that have no definable biological cause and exhibit a variety of symptoms are categorized as syndromes.

Fibromyalgia, therefore, is categorized as a syndrome as are multiple sclerosis, rheumatoid arthritis, migraines, and hundreds of other chronic health challenges. Fibromyalgia likely affects about 10 million Americans (mostly women) and the numbers globally continue to rise.

Now that I’ve covered some fundamentals, here are five more things that I think are important for you to know about fibromyalgia as well as about how fibromyalgia affects me.

#1 – Fibromyalgia is actually a systemic health concern. That means multiple systems of the body are compromised and may experience dysfunction. Many of us exhibit symptoms related to the musculoskeletal, nervous, respiratory, digestive, cardiovascular, immune, urinary, endocrine systems and more.

We’re all different. Some fibrofolk experience symptoms that relate to more than one system (or systems) than others. For example, some may experience frequent digestive dysfunction issues and rarely experience cardiovascular issues, etc. This varies widely.

The most dominant symptoms that we do share, however, are:

  1. Chronic widespread body pain that varies in type and intensity day by day (muscles, joints, headaches/migraines, etc.)
  2. Fatigue (this doesn’t mean simply tired – it means knocked down, dragged out, run-over-by-a-truck exhausted feeling that lasts for days, weeks, or much longer)
  3. Sleep disturbances (difficulties in falling asleep or staying asleep – also, not feeling rested even after sleep)
  4. Concentration, memory, and cognitive dysfunction issues (grasping for words, forgetfulness, difficulty in completing tasks, etc.). This is oftentimes referred to as fibrofog.

There’s a plethora of other symptoms, too. Digestive issues are very common as are anxiety and mood issues, balance and coordination challenges, weight management issues, whole body stiffness, PMS, inability to regulate body temperature and more.

While there are far too many symptoms to list here, the top four listed above are the biggies. Mine vary from day-to-day and while sometimes I feel some more than others, they’re all usually lurking under the surface.

I’d like to say a quick word, here, about depression. As you can imagine, dealing with chronic and relentless pain (and more) leaves its mark. It can leave a person feeling frustrated at best and potentially depressed at worst. Depression can especially develop for those who feel overwhelmed, unsupported, and hopeless about their health circumstances.

Therefore (non-clinical) depression can result from all of the factors listed above. It’s not the cause of the factors listed above. This distinction matters for reasons of establishing a diagnosis, a future prognosis, and potential treatment(s) for existing depression.

#2 – No, I didn’t “do” anything to cause fibromyalgia. There are multiple reasons that fibromyalgia can develop and it’s never just one thing. It takes a combination of factors and some of the most likely include:

  • A compromised digestive system* (contributed to by food sensitivities, stress, processed foods, diets and more),
  • A family history of immune system dysfunction and/or allergies.
  • Infection(s).
  • A traumatic physical event or injury (includes surgeries).
  • A traumatic stressful/emotional event.
  • Vitamin/nutrient deficiencies (*can be contributed to by a compromised digestive system).
  • Environmental exposures to toxins (both internal and external).
  • Multiple chronic infections leading to repeated use of antibiotics, steroids, or corticosteroids or non-steroidal anti-inflammatory medications.
  • Dental issues.

Also, any number of the above factors can lead to:

  • Whole body inflammation.
  • Chronic yeast and candida issues.
  • Compromised adrenal, thyroid, and hormone regulation.

These things set the stage for dysfunctions in multiple systems of the body. That’s why there’s such a wide variety of symptoms.

#3 – It’s important to understand that fibromyalgia and my symptoms are unpredictable. I’d love to “know” how I’ll feel tomorrow or even next week, but I simply don’t. Sometimes I can do something relatively minor (like fixing dinner for my family) and feel awful afterward. Other times, I can participate in something major and feel fine.

But, here’s the important part. If I can’t predict my own reactions to foods, places, events, circumstances, etc. – I certainly don’t expect you to.

I appreciate your concern when you ask if I “should” do this or that, but it’s my choice. I get to decide what I will or won’t choose to do. And, I’ll deal with the consequences of my choices. Additionally, I don’t expect you to know what to do, what to say, or even how to help me. It’s my choice and responsibility when (or if) to ask for help, and to share how I’d like to be helped.

#4 – In a nutshell, it’s important to grasp that having fibromyalgia makes me hyper-sensitive. Things that don’t pinch, hurt, or even annoy most people might drive me crazy. A heavy necklace or a large purse can feel like I’ve got an anvil pulling on my neck and shoulders. A simple touch or even an embrace can leave me feeling as if I’d been squeezed in a vice.

Sounds, lights, smells, tastes, and touches can be unusually amplified. Please respect (and withhold judgment) when I express that something may be too loud, too bright, to stinky, too spicy, or too painful.

I’m not trying to be difficult.

I’m simply trying to share my feelings and experiences.

And, along with being hyper-sensitive, there are some things I can’t control. While I agree it may look funny, it’s not humorous to me when I startle easily, jump at loud noises, or shriek when unexpectedly alarmed. It’s as simple as a reflex and I can’t change that.

It’s important to note that due to this hyper-aware state, stress is also amplified. Therefore, avoiding stress and dealing with the stress I can’t avoid has become my priority. For me, stress isn’t a simple fact of life to accept. Its negative effects are far-reaching and potentially long-lasting.

It is, therefore, an important health mission for me to participate in relaxation activities and care for my body physically, emotionally, and spiritually.

#5 – I appreciate your thoughtful suggestions for how to manage my health challenges, but keep in mind that above all, I’m doing the best I can.

Your helpful advice will be taken into consideration. If I apply your suggestion to my current protocol of treatments, I’ll do it because I feel it could benefit my healing process. If I don’t take your suggestion, it might be for any number of reasons. I may have already tried it, I may have researched or read something to the contrary, I may not have the resources to put it into practice, or I may feel it would conflict with something else I’m already doing.

While I may or may not have the time or energy to go into all this detail with you, please know that I value your concern. If there’s anything that I’ve learned, I know that there’s no single pill, practice, or program that will “fix” fibromyalgia. If there were, I’d already be taking it, doing it, or be devoted to learning it.

Which is exactly what I’m doing now.

I’m learning as I go.

One of the hardest lessons I’ve had to learn is how to express myself. Although it’s difficult, here are a few thoughts on that topic:

Please don’t….

  • Tell me that you know how I feel. Even if you have fibromyalgia and/or any other health challenge, we’re all different and experience our conditions differently.
  • Tell me how I should feel. That’s up to me.
  • Tell me that so-and-so drank this “magic juice” and got better. There are as many treatments that don’t work as ones that do. I’m on the journey to discover this process on my own.
  • Compare me to siblings, friends, colleagues, who don’t have health challenges or even those who do. As I’ve stated, I’m on my own path to wellness.

Please do….

  • Tell me that you’re thinking of me. Even if I’m not terribly responsive or talkative it’s wonderful to know that you’re supportive of me and of my health.
  • Send me books, magazines, cards, emails, notes, etc. that express that you’re there. Chronic illness can be SO isolating and every kind word from you matters to me.
  • Ask if there’s anything specific that I need. Even if I say “no” 50 times out of 51, that one time that I really need something may mean the world to me.
  • Continue to search for helpful treatments, protocols, nutrients, supplements, and practices. Just because I don’t always implement your suggestions doesn’t mean I don’t appreciate the help. I’m always open to and encouraged by current news and information.

In summary:

  • Remember that my body may bruise like a tender peach, but my will is strong as iron.
  • What I’m really trying to say is that inside, I’m still the same me.
  • I’m just trying to find my way as best I can.
  • I’d love it if you’d come along with me on this unpredictable journey.

               Not behind me pushing,

               Not in front of me pulling,

               But beside me – guiding, encouraging, nurturing and supporting

Are you with me?

_________________________

Sue-IngebretsonSue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community.

Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

Would you like to find out more about the effects of STRESS on your body? Download Sue’s free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.

How to be Aware in 2014

So, you’d like to get involved in International Fibromyalgia Awareness Day but you don’t know how, where or what?

Here’s a collection of events and activities:

Light Up the Night (online)

Light Up

The challenge (and we NEED your help!) is to light up as many buildings as possible with any of the 3 colours used on International Awareness Day (May 12th) – blue, purple or green.

Change one light bulb or… light up your house like a Christmas tree!!!
Light up your own home or… the Empire State Building!
Radiate a single beam or… run a competition in your street!
It’s up to you.

With the awareness we WILL create, we will all be winners but THE winner will be the country with the most photos in each of these categories:

  1. Number of Public Buildings/Places
  2. Number of Private Residences

Of course, we’ll need photos of your buildings aglow so photos should be to sent to May Twelfth at info@may12th.org. All pictures must be emailed by May 19th to be included. Please include information about where the photo was taken (ie town, region and country)

Calgary International Awareness Day Educational Event for Myalgic Encephalomyelitis/CFS, Fibromyalgia & MCS  (Alberta, Canada)

Every year in May, celebrations are held all over the world by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity and their supporters.   The celebration is also a day of advocacy and awareness.  The 2014 Calgary May 4th program will again use technology to allow the best speakers to present exciting information about treatment advances by two-way weblink. The audience will be able to hear and interact with the speakers in real-time.

This presentation will be recorded so that if you are unable to attend or if you wish to view it again, you will receive a link to the recording and will be able to watch it in entirety as many times as you like. The Speakers are:

  • Craig Young
  • Staci Stevens
  • Jarred Younger

Fibromyalgia, CFS & ME Gold Coast Fibromyalgia Awareness Day Picnic (Queensland, Australia)

FibroMummies Butterfly Tea Party (Lincolnshire, England)

Fifth Annual Fibromyalgia Awareness Dinner (Indiana, USA)

The fifth Annual Fibromyalgia Awareness Dinner will be held on Thursday, May 8th at Great Oaks Banquet Hall in Cedar Lake, Indiana. Tickets are on sale now through May 1st for just $17 which includes a family-style, all-you-can-eat chicken/fish dinner with French fries, coleslaw, salad, rolls, coffee, soda, and water. Tax and gratuity are also included. A cash bar will also be available. Cash and checks are accepted. Credit card payments are also accepted for an additional fee of $1 per ticket.

Jammin’ in our Jim Jams (online)

JammingDawn, Rob & Amy are jamming in their jim jams on Sunday 11th May!

There are 3 ways to support them:

 

  1. Donate on http://www.justgiving.com/dawn-Derraven
  2. Buy some jam – email Dawn @ fibromyalgia.dee@hotmail.co.uk
  3. If you aren’t able to donate, please visit and SHARE Dawn’s blog: Fibromyalgia-dee.blogspot.co.uk/

 

May 12 Blog Bomb (online)

Blog BombWrite a post describing your FM story, and how the condition has impacted on your ability to function in society (or another related topic)……

Schedule your post to be published May 12th using the hashtag #May12BlogBomb for sharing, so that these posts can then be found and shared widely on FB, Twitter, Google etc. (Just add the tag to your FB and Twitter posts promoting your blog post so that others can find it more easily.)

Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) and Fibromyalgia Awareness Family Day Picnic (Tasmania, Australia)

sorry - no link

13th Annual Michigan Fibromyalgia Awareness Day Conference (Michigan, USA)

Featured speakers will present information on understanding and managing fibromyalgia, and how to overcome the daily challenges of life with fibromyalgia.  A strong emphasis will be placed on diet and holistic therapies.

Thunderclap (online)

Join May Twelfth in sharing this message together at the same time – automatically: Tell the world! Today is May 12th International Awareness Day for ME/CFS & FM. #may12th #mecfs #fibro #spoonies #fmhttp://thndr.it/1hUCsUn

Walk to Cure FM, 1k-Fun Walk/5K Run (Ohio, USA)

Walk and run as well as Door Prizes, Raffles, Tee-shirts, Brunch, Awards Ceremony, and Entertainment!

Zumbathon for Fibromyalgia (Indiana, USA)

 

If none of these activities appeal to you, you can always share this information with others on Facebook, Twitter, Google, etc… or you could always wear a Fibromyalgia Awareness top? (Can’t blame a girl for trying!)
Int Fibro

 

 

A Voice for Fibromyalgia?

Leah Tyler

This has been re-blogged from Leah Tyler at the Chronicles of Fibromyalgia:

Dear Pfizer,

Last night one of your commercials for Lyrica came on TV. In this ad a woman claimed her overactive nerves, caused by Fibromyalgia, gave her pain and kept her from doing the things she wanted to do in life. Obviously she went on to tout the praises of your drug, but I wasn’t listening. Instead, I was hung-up, obsessing, and ranting and raving over the use of one word, wanted. Fibromyalgia kept her from doing the things she wanted to do in life? Like rock climbing or going to an Eminem concert? Because this Fibromyalgia patient over here experienced a completely different reality. Not only did Fibromyalgia keep me from doing the things Iwanted to do, it also kept me from doing the things I had to do, like washing my hair and going to work. And I know a hell of a lot more patients sing my song than Miss Wanted To Do’s.

I have added this video as we don’t have ads for prescription drugs on TV (and I’m not sure about all other countries):

Needless to say, as a nine year veteran of Fibromyalgia, I found this phrasing offensive. In short, here’s my beef; You’re $opping up the dough off a disease that isn’t technically a disease, because nobody knows what causes it. So it wouldn’t hurt too much to throw us patients a bone, would it? Because we’re in a pickle and sure could use your help. Not only is Fibromyalgia the leading pain condition diagnosed in the USA, patient symptoms run the gamut, with a range of fluctuating severity. It affects everyone differently, and to make it even more convoluted, the treatments do, too. Please understand I am an educated consumer. In no way am I holding any pharmaceutical company responsible for sourcing the cause and cure of this mysterious ailment. And I’m well aware of how expensive the process of developing a drug, testing it, and bring it to market actually is. I’m even hip to the efforts your company invests in regarding Fibromyalgia awareness and cause advancement. But maybe it’s because of these reasons I’m actually pissed at you.

I know you pay a pretty premium for the advertising, but as of right now, Pfizer, you are the voice of our illness. Countless patients have lost their ability to function from Fibromyalgia, along with their jobs, families, friends and homes. Fibromyalgia is a devastating reality hotly debated in the crossroads of modern and psychiatric medicine, yet nobody can deny the number of patients is only growing larger. As the only other source of the word “Fibromyalgia” to many people in our society, other than ‘strange Aunt Sally who doesn’t like to leave her house’, you would do the aforementioned injustice a world of good if the chick on the Lyrica commercial said had. ‘Fibromyalgia kept me from doing the things I had to do in life.’ It would give millions of people some much-needed validation.

Thank you for your consideration,

Leah Tyler

I’m probably looking at this from a different point of view than most: I have been trying to encourage all of us, via this site, Facebook and Twitter, to become a voice for Fibromyalgia by sending emails, sharing posts or tweeting; and, then, on May 12th, lighting up their home with purple bulbs (this part is the only bit that may require some physical exertion). (Don’t know what I’m talking about? Check this out.) However, due to the very nature of our condition, it is so difficult to get many of us to actually do any of this…so, yes, it is sad that, despite how hard some of us try, Lyrica ads are the only voice for us!

 

Int Fibro

Pay It Forward

payFor Christmas (and any other time of the year), how about we all try to do, at least, one nice thing for another person?

Remember the movie, Pay it Forward (my favourite movie of all time!)?

Wouldn’t it be great if the world was a nicer place?

FCK

This piece is from Jess at Discovering Me, a member of FCK: a directory of blogs that help spread knowledge and awareness of Fibromyalgia.

This is INITIATIVE!!! 

In its simplest form it is thinking of and planning something, you can do in the form of a physical job or task and following this through to completion.

I’m not talking about grand plans that need grand rewards. There should never need to be any kind of self boost from helping someone. This isn’t something you do and then plaster all over Facebook to your friends, or blog about.

Simple examples of Initiative:

For the husband

  1. Husband sitting watching favourite T.V. show can just sit there OR he could use some initiative and fold the washing that Wife has washed/pegged/unpegged/brought in off line/left in basket hoping said Husband may tonight have found a spare can of initiative in refrigerator not another beer can.
  2. Husband has told Wife it is her night off dinner duties. Husband has no idea how to cook so you could either ask wife how to do everything – starting with what shall we have for dinner… OR you could use some initiative either plan a meal from a recipe book, online, call your Mum/sister/Mother-in-Law/best friend. But do not tell Wife she has night off and then have Wife wishing she had just bloody well done it herself as it was easier. All else failing order takeout.
  3. Wife gets told its her day to have a sleep in. Husband can tell she is tired. Husband can tell children to quietly watch tv and get their own breakfast while he stays in bed too on his computer/phone/tablet OR he could use some initiative and take the children to a special breakfast outing somewhere followed by a morning out with Daddy {while Mummy rests in peace and quiet}
  4. Husband offers suggests Wife has an early night as things are getting on top of her lately. Muchly appreciating the offer exhausted Wife goes to bed, then Husband sits and watches T.V  OR you could use some initiative and do the dishes, pick up the dirty washing, fold and put away the clean washing etc etc. There is nothing worse than going to bed for an early night to get up the next morning and find that nothing got done and you are a day behind on chores.

For the new parent 

  1. Make a few home cooked meals/baking {that are suitable for freezing} and drop them off in the first few days/weeks after the birth of their new bundle. This is the mother load initiative. Dinner time is called the witching hour in households with children for a reason. Make sure they are in containers that can stack neatly in the freezer and can be reheated {the supermarket and dollar stores have these}. Write on the containers whats in them – it saves trying to guess what tasty treats you may be getting and find tonight we are eating lammingtons!
    A really organised friend may even be able to get a few friends on the go with this to have a roster system going where hot meals are being delivered at tea time. I prefer the reheat option to gives you the control over what time you eat and if you are having a super organised day and managed to do dinner yourself you still have back ups in the freezer. If you are going to go with a roster of freezables make sure the organiser has spied out the available freezer space – usually the Dads are the go to option for this they never say no to food where the Mums may feel bad or that they aren’t doing enough as a mother blah blah. This is help/gift/initiative not judgement
  2. When dropping off presents – unless you have arranged a time or can see/hear movement – don’t go knocking and expecting to be let in. Leave the present on the doorstep with a lovely note/card and arrange a time that is suitable with the new parents to stop by again. Ahem I hear initiative.
  3. Finally getting to see the baby – when you arrive baby is asleep and Mum looks exhausted. Hello initiativeeither let you friend know you are happy she/he/they are still alive and shoo them off to bed while you leave them to rest and you will catch up soon. OR offer if there is anything you can do – hang out some washing, put a load on, fold some, some ironing, take an older child with you some they can rest, do some dishes, vacuum. Just use some bloody initiative.
  4. If by chance you actually make it in the door for a visit and everyone is alive, well and rested initiativedoes not go out the window. This is where YOU get up and make the cuppa and while you are there you also might do some washing up or stack the dishwasher. You may also realise the fridge is almost bare due to new baby and no time to shop – so make a mental note to either do a small online shop and have it delivered or go to the grocery store,  fill a box and drop it off of some essentials, easy snacks and a few treats for Mum (milk, bread, butter/marg, yoghurts, fruit, cold meats, nuts, some chocolate, snack bars etc etc).
  5. Don’t stay too long Babies get tired, Mums/Dads are exhausted. Unless you are Mother/Father/Brother/Sister/ Aunt/Uncle and you are staying at the house to HELP (not be a pain in the ass and be waited upon by your already exhausted children/siblings). Use initiative and know when its time to go – or when you need to stay longer. Ask if you should leave and know when they are being too polite to tell you to feck off already!
  6. DONT give advice unless it is asked for. Use some freaken’ initiative babies are all different and so are the parents. What works for you doesn’t work for everyone. Be there to listen and if you are asked for advice give it but always add this is what worked for me. That way they don’t feel like they left some manual behind that everyone else got or feel judged that you could do it when they so clearly are having a tough time. Tell them about a struggle you had to let them see we all fail at this and somehow it all turns out okay (ish).
In public 
  1. Old lady with shopping walking towards door struggling with bags OR you could practice some initiativeand hold open the door, offer to carry a bag and help her to her car. Even better! get the kids to help! {Teach your kids initiative now people before it’s too late}
  2. At the park little boy on trying to get on swing. Mum juggling newborn saying I will feed you once Johnny has his swing. You could think poor child, welcome to the real world, you are going to be ignored a lot more than just this now! OR you could say to the Mum is it ok if I help him up and give him a push? I remember whats it’s like to have my hands full! Use some initiative Mother will be grateful son got swing he has harped on about for past two weeks and she is able to feed baby who is no longer wailing like a fire truck.
  3. You see a mobile phone sitting outside the grocery store – clearly forgotten – no one in sight. You could think. Poor buggers probably wont be there by the time they come back OR you could hand it in at the grocery store service desk using your friend Mr. initiative.
  4. You are at your favourite family restaurant – The Golden Arches. After you have enjoyed your meal knowing the children will be eternally grateful {until the next time you have a fight which will be in approximately 1.5 minutes when you tell them you are not playing on the playground} you look around a see all the tables lined with trays and rubbish. You could get up and walk away thinking the lobby girl is going to have fun once she gets out here OR you could use some of that awesome initiative to go and put your trash in the bin and the tray on top. How hard was that? Would you expect your children to leave your table looking like that? So why is it okay just because you are out??

Initiative works best when you also have common sense and know your Husband/ Wife/Parents/Children/ Family/Friends well. If you know they are lacking support but there is no way you can help due to time and space try take the load off by sending a gift in the mail to let them know you are thinking of them. You can even do most of it online these days where you don’t even have to go to the post office.

If it is a family member rally the family {there may be a group of close friends instead} to share the load and see what you can all do between you. Everyone has different talents and abilities and between a group of people there should be a few ideas to help out.

Just don’t do nothing! ACTIONS SPEAK LOUDER THAN WORDS. Words are great and touching when we need some uplifting but action it by putting them in a really nice card and posting it – to say hey! I thought of you enough to pick this card especially for you, and then said lovely things too.

I think the world could be a better place if we could all learn to use a little initiative.

Me, too – Thanks Jess!

FibroModem – Health Activist?

blog_titled_transparent_2013-10-22Thanks to you, I have been nominated for a WEGO Health Activist Award.

Should I be honoured enough to win one, I will receive a subscription to research publications to stay current on the latest research and information about FM, which I will then be able to pass on to you.

If you would like to endorse me, please visit my WEGO profile page

WEGO Health Activist Award

I’ve been nominated for a WEGO Health Activist Award; and (I’ll admit it) I would really like (and be honoured) to receive one.

So, if you think I deserve one, please nominate me at the WEGO site.

Tee Hee! I’ll even guide you through the process:

  1. Type www.fibromodem.com in the web address space then click NOMINATE
  2. blog_titled_transparent_2013-10-22Click on BEST IN SHOW: BLOG
  3. Type fibromodem@fibromodem.com into the email space, then click NEXT
  4. Type in the reason why you think I deserve the award (and if it’s because I’m asking you, please don’t do it)
  5. Click on CONTINUE
  6. Find FIBROMYALGIA on the list of interests, then press CONTINUE
  7. Insert the URL address of the site you follow me on (as below), then CONTINUEWEGO
  8. Type in your details, then CONTINUE
  9. Click on SKIP
  10. And, finally, click on SUBMIT

Thank you.