Foggy with a Chance of Rain

We experience a complicated mix of symptoms (just ask all those doctors we visit), the most frequent of which are an overwhelming feeling of fatigue (this is my personal favourite!) and pain.

For those new to FM, one of its hallmarks can be very scary – Fibro Fog

119. fibro fog

Fibro fog is a complete and utter lack of energy (even after a full night’s sleep) that causes an inability to focus or concentrate. This exhaustion makes it difficult to exert mental or physical energy for anything.  Fibro fog is a real cognitive impairment that makes simple tasks, such as remembering names or following directions, difficult if not impossible. There are, however, a few ways to help that don’t involve medications (because sometimes it’s those medications that make the fog worse!)

  • Pace yourself. Don’t pile on too many tasks for each day, and the ones that must get done should be scheduled for your “best” time of day. If the fog lifts more in the morning, schedule important meetings or other tasks early.
  • Develop a routine. This gives a predictable structure to the day so there is less need for remembering what is supposed to happen when.
  • journal picKeep it simple. Write lists, take notes, and utilize a personal planner. Keep your space organized and clutter-free, and deal with any paper (mail, bills, etc.) as soon as you get it to stay organized.
  • Get physical. People with FM report that physical activity relieves the painful symptoms, and research shows that moderate daily activity eases symptoms of depression and encourages better sleep.
  • Control your stress. There is a strong link between stress and chronic pain; practice deep breathing, visualization, and other meditative techniques to deal with or plan for stressful situations!

There are some new online brain-training sites such as Lumosity that have shown some promise in helping people develop concentration, flexibility in thinking, and otherwise increasing the neuroplasticity of the brain. These are free or low-cost, easy to try, and may help lift the fog over time.

For families of FM patients, it is important to understand that fibro fog is real. Be supportive and help to keep schedules reasonable and stress to a minimum. Participate in physical activity with your loved one, and help them to remember important events. The more stress you can alleviate, the better off everyone will be!

FLARE

christy & the professorsChristy & The Professors, originally called Christy (Christy Foster) & The Professor (Nathan Foster), started in early 2013 as a fun project for a husband and wife team. Shortly after launching the project, the duo wanted to build a full band and added a few friends to play drums, percussion, and do backing vocals in the group. In August of 2013 local guitarist Shane Pitmon heard the band live and a week later asked to join the lineup. Over the next couple months the band made a few more lineup changes and in November 2013 added drummer Ryan Hudson. After adding Ryan, the current lineup was in place and Christy & The Professors began work on their debut EP.

christyChristy, like us, has struggled with fibromyalgia. Being in a rock band, she wrote a ROCK song about how she was treated by the medical community and thought it might resonate with others who have had a similar experience.  The song is called FLARE!


WORDS:
And they say that they think that it’s all in my head
And I say that I feel I’d be better off dead
All the blood that they drew they could never be fed
Forget you

And they say that they know how I feel
And they say that they know what’s for real
You’re just a cog in a broken medicine wheel
Forget you

I-I am not your waste of time
Your pride is such a shameful crime
Your ignorance it blows my mind
Forget you

You think that you know me
But you’ll never know me
You are such a waste of time

You think that you know me
But you’ll never know me
I never gave you what’s mine
Forget you

I-I am not your waste of time
No no you are so blind
I-I am gonna blow your mind
Forget you

 

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Fibromyalgia – it IS life threatening!

For those who have heard about, but didn’t get to see, Dr Oz’s show about Fibromyalgia… dr oz

It is a four part video. Here are the video links:

10 Reasons To Increase Fibromyalgia Awareness

Yesterday, I re-blogged an article asking us not to leave the promotion of FM awareness to only one day – May 12th…Today, I wanted to remind you of why:

    1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about FM, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
    2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
    3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
    4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
    5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
    6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
    7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
    8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
    9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
    10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Happy Birthday to All of Us

Hello my little family of Fibro friends,

Today, I received a notification: I have been with WordPress for 1 whole year; which means today it’s our birthday. And I say ours because if it wasn’t for our little band, I probably would not have continued to blog every day or maintained my vigilance with our awareness projects.

So, I figure that now is the perfect time to have a run-down of our current projects, set some goals for the next year while promoting those projects to those of you who have not gotten involved…

The VISIBLE Army 

Become part of the Fibromyalgia VISIBLE Army! Join another 898 soldiers (with and without FM) who are fighting to bring awareness to our invisible condition.

If you haven’t already joined, visit our page of templates, insert a fabulous photo of you, then post your new profile picture to my Facebook page so I can add you to the gallery on this website, Pinterest and the FB gallery.

Visible army squareOriginally, the idea for the photos was to have you all upload them to your profile pictures. I understand some of you hesitated in uploading your VISIBLE Army photo, as FM is NOT your whole world (for some of you); but the idea for all the photos was to encourage other people to ask questions.

So, on March 12th (just passed!) and April 12th – I am asking you all to upload your VISIBLE Army photo for the whole day. Then, for the entire month of May (May 12th is International Fibromyalgia Awareness Day), you keep your VISIBLE Army photo as your profile picture.

Thunderclap!

Thunderclap is a tool that lets a message be heard by saying it together.

When we reach our goal number (and we already have!), Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time!

Our message is set to ‘go off’ on May 1st. The message that will appear is: Make Fibromyalgia VISIBLE (for the whole of May) with this Facebook cover photo http://thndr.it/VaVZqZ

The cover photo that we are asking everyone to upload, to turn Facebook purple is:

header

Right now, we have 269 supporters and we will reach 87,210 people on May 1st.

This is one time when you really can make a difference. Visit our Thunderclap and choose to promote and/or support it on Facebook and/or Twitter. I think it is quite realistic to have a current goal of a social reach of over 200,000! Help make it happen!

FCK

FCKProvocative, isn’t it?

FCK stands for Fibromyalgia, Community, Knowledge. It is a directory of bloggers who educate, support, inform, inspire & motivate people about & with Fibromyalgia.

I chose the acronym deliberately, not to offend but, to make people take notice.

I think it’s about time we start ‘branding’ our awareness campaign. We NEED to stand out! We NEED people to take notice. We NEED people to ask what it is.

So, I’m hoping that as the directory grows and more people share the link, more people will see the banner and actually ask about it.

Fibro-Knowledgeable Doctors

We all know how difficult it is to find an understanding and knowledgeable doctor. You may not have noticed but we currently have a page called Fibro-Knowledgeable Doctors. These are doctors who have all been recommended by patients.

For pages like this to work, we need more people to share their recommendations. If you have one (or more), please email me at contributions@fibromodem.com.

LIVING WELL with FIBROMYALGIA

CoverWe have just published our 4th issue of the E-Mag LIVING WELL with FIBROMYALGIA. It is available (for free) by subscription.

Our next issue, out June 1st, is themed TREATMENTS. If you would like to contribute, check out what ‘m looking for HERE.

So, happy birthday to us; and keep spreading the awareness!

TGIF…in some places

Because I forgot yesterday (when it was Friday in Australia): here is Six Word Friday
six word fridaysThe Six Word Friday prompt this week is HAND or HANDS – (Hand it over! Helping hands. Hand in hand. Hands down…on the other hand… Hand-me-down.)

The challenge with this kind of post? To keep each line I write to only SIX {6} WORDS!! (we don’t count the number of lines, syllables or letters…just the number of words!).

Examples have included:

  • Six word photo caption
  • A verse, each line composed of six words
  • A story, told six words at a time
  • A six word quote {or six words of a quote}
  • A wish {a musing, a lesson…anything at all!}

Now this one might be cheating (but I’m all about pushing boundaries!)

Cant-Keep-My-Hands-Off-You-Feat-Rivers-CuomoBy Simple Plan  ft. Rivers Cuomo.

You might want to turn your sound down slightly…

The Chosen People

When I made my video ‘Why Me?’, it was supposed to be a tongue-in-cheek title.

Basically, as many people pointed out, FM can happen to anyone – so why not me?

At the age of 34, I embarked on a six-year adventure to study law – my friends wondered why I would do it.

At 40, I graduated, was admitted; but was only able to practice for one month – why me? I asked.

In February of this year, I discovered Facebook pages (rather than personal sites) and I quickly became addicted – my friends wonder why I would do it.

At about the same time, I discovered the wonderful world of blogging; and in March, I wrote my first blog post. Whoa! Have I come a long way since then. But my friends wonder why I do it.

I cannot even work part-time; I cannot drive more than 10 kilometres; I cannot participate in my favourite activity – retail therapy; I am lucky if I can read one chapter in a book; but, worse than all of that, I experience excruciating pain, forget things most of the time and almost always have a headache. Some of my ‘friends’ think that it is all in my head, others think that I am just being lazy… yes, I am misunderstood. I wonder why my friends do that!

LIGHT BULB MOMENT – I have the answers:

I can research most topics as I studied so much. I can ask questions (no matter how silly) as I learnt that there are NO silly questions – just silly people who don’t ask questions. I can create visual material to raise awareness about FM as I like to think that I am a creative person. I can reach out to millions suffering from FM, force their families and friends to accept and understand them as I have already established a blog, a Facebook page, a Twitter personality and a Pinterest persona. I have a background in hospitality so I will get my International Fibromyalgia Awareness Day Symposium/Luncheon off the ground – even if I have to raise the money myself (one bracelet at a time!)

I am one of the chosen ones – I can combine all my experience to raise awareness of our condition; and touch the lives of many.

If I did not have FM, would I have ever thought of doing so? Would I have even heard of the condition?

So, I know why I have FM. As one of the chosen, why do YOU have FM?

No Condom Necessary – Please Share!

Safe to share (no protection necessary!)

The First Time

Many of us think we’re stuck: nothing is going to change, this is it, this is my life!

But why? There are still so many things we can do – and, for those of us stuck at home, perhaps a new opportunity to try something new.

It’s halfway through the year and here’s what I have done for the time:

18 January 2012 – Attended my first burlesque performance

2 February 2012 – Attended my first hydrotherapy class

27 February 2012 – Started my first Facebook page

6 March 2012 – Attended my first Bowen therapy treatment

13 March 2012 – Went to the Doggy beach for the first time

16 March 2012 – Wrote my first Blog post

28 March 2012 – Made my first video

1 April 2012 – Opened my first Cafepress store

4 April 2012 – Attended my first Pilates session

12 April 2012 – Attended my first Yoga session

18 April 2012 – Attended my first Tai Chi class

22 April 2012 – Z sleeps over for the first time

25 May 2012 – Produced my first cartoon character (FibroModem Girl)

1 June 2012 – Published my first newsletter

1 June 2012 – Attended my first Shaitsu treatment

7 June 2012 – Attended my first reflexology session

***NB – dates are from my own diary and may be incorrect as compared to blog posts.

Now I’m not trying to toot my own horn here – what I am trying to do is inspire you into trying something new. It can be absolutely anything – somewhere in all of that, I tried to make vegetable muffins for the first time – massive failure! So you could try baking, meditating, reading a new author, etc.

So tell me, when was the last time you did something new? And what was it?