‘Til Next Year?

So another International Fibromyalgia Awareness Day has passed…time to recover and take a breath – but what then? Are you going to wait until next year to promote awareness of FM?

From Fibro Daily:

purple-warrior-sandy-prenziThe efforts of Fibromyalgia Awareness Day shouldn’t be relegated to May 12th. Instead, they should infuse the whole calendar with the Fibro Warrior Spirit.

So short of storming the castle and scribbling all over accessible calendars, how do you infuse that Fibro Warrior Spirit into the days beyond May 12th?

French-castle-purpleWell, really…you should storm the castle.

Think of the castle as all the entities that resist Fibromyalgia, rolled into one, then storm it with your charm, determination, and wit. Organize the non-Fibro castle with a ferocity that makes a knight take notice! After all, this is your health we’re talking about. Your life. Don’t play proper!

tAG_129661Play strategically, with a smile. A Fibro Warrior smile.

By doing so, you’ll invoke change.

Ways to Strategically Invoke the Fibro Warrior Spirit:

1. Develop a social media presence.

Start a Facebook page and Twitter account that focuses on raising Fibro Awareness. Ask people you know or who are on your personal page to like and follow the cause, then spread the word.

To develop a strong following, you must consistently post relevant posts. The internet is FULL of these, so start researching and posting! A Fibro Warrior searches every nook and cranny for “bootie”.

My awareness campaign32. Start a Fibromyalgia group in your community.

Again, social media is going to play a huge part in this effort because you will organize meetings via the social media sites. Even if only one person responds to your meeting request posts, forge ahead!

To prepare for this meeting, take paper, pens, and highlighters for those who might not feel comfortable using technology to take notes. A Fibro Warrior always carries supplies.

Why do you need to take notes?

Because you are going to brainstorm ideas about how to publicize Fibro Awareness in your community and to do so, you need to keep that arch enemy Fibro Fog at bay.

A good way to start publicizing is by giving free Fibromyalgia presentations at local meeting spaces, such as the YMCA. Make a list of those types of places. Make sure to include:

  • gyms
  • spas
  • yoga studios

Focusing on beauty and health businesses makes sense, as their clientele are more attuned to wellness. Also, such businesses tend to be frequented by women, which is your target audience as more women are diagnosed with Fibromyalgia than men. However, don’t forget the men! Their pain remains severely unacknowledged.

At the very least, all presentations should feature an explanation on the history, diagnosis, and research of Fibromyalgia.

3. After brainstorming, approach local businesses about using their space to give a presentation on Fibromyalgia.

That means you also need to:

  • Ask if the business is willing to hang flyers prior to the event.My awareness campaign2
  • Ask the owners/employees/fitness instructors to make an announcement before each class/session they lead.
  • Make sure to network the right way! You want to let the public know when a business has helped your efforts. That means you should give them a public thanks by mentioning them on social media and in promotional materials.
  • Hit up as many businesses as possible to reach as many people as possible. You can use your Fibromyalgia group to divvy up presentation responsibilities—i.e., one person does the approaching, one does the presenting, one handles the promotions.

A victorious Fibro Warrior knows how to delegate and appreciate.

4. Use every endeavor—meetings, presentations, and interviews—to further the cause.

Make a sign-in sheet and request that people leave their name and Facebook/Twitter info. Prominently display your own contact info so people can like you on Facebook or follow you on Twitter.

Once you have the contact info, add them to your friends and keep them informed of all you are doing. The more people you tell, the more people will share.

Consider this info collection your Fibro Warrior battle cry.

5. Learn to write a press release. You can easily research this online.

After building substantial support and giving a few presentations, send out a press release about upcoming presentations to:

  • local TV station
  • local radio stations
  • Fibro websites and podcasts

Local media personalities are always looking for positive stories about the community. In the press release, include all the online success you have had plus the presentations you’ve given. Mention that you’d love to share more about your Fibro Warrior efforts over an interview.

If they say no, don’t let them off so easily. Contact them again, at a later date. A Fibro Warrior always keeps the target in sight.

6. Fight for Fibromyalgia legislation on a city, state, and national level.

(For USA) Check out government websites to see if the ones you are focusing on have released any proclamations about recognizing Fibromyalgia.

Also, a very handy map can be found at http://fmcpaware.org/resolutions-and-proclamations?sid=640

If you click on a state, it will reveal what fibromyalgia legislation the state has passed.

If your city/state doesn’t have any, it’s time to start:

  •  writing letters
  • writing emails
  • making phones calls

to government officials. You can find their names via search engines and government websites. Include any press releases and media coverage you have received. Politicians like numbers (surprise!) If you are making a positive wave in their community, they’ll want to hitch a ride.

Remain diligent on follow-through with the politicians you contact. So many efforts fail because of a lack of follow-through. Just because a contact don’t respond right away doesn’t equate to wasted efforts. You just have to outlast the politicians’ determination to ignore. Don’t get used to being ignored. Fibro Warriors stand tall and proud even in the face of adversity!

7. Breathe. Laugh. Live.

In order to succeed as a Fibro Warrior, you must live your life to the fullest.

Don’t let Fibromyalgia prevent you from doing that.

Enjoy a hot bath. A massage. Eat a luxurious meal. Nap. Spend time with family and friends. Work. Do yoga.

By pursuing activities outside of the Fibromyalgia realm, you will actually strengthen the Fibromyalgia realm. That’s because you’ll see it with a refreshed, renewed vision.

Remember: You are a Fibro Warrior, so invoke and change. Some people don’t even think you exist, but those people don’t know what’s about to hit them.

Purple_Warrior_by_AjarnNog

An Oxymoron? Realistic Hope

Cheerleader_2_1While improvement is reasonably common for FM patients (insert CHEER!), a return to your pre-illness level of health is rare, says Dr Bruce Campbell of the CFIDS and Fibromyalgia Self Help website. In his experience with several thousand people, Dr Campbell estimates that progress usually tops out at something like 50% to 60% of normal. There are people who do even better, but they are rare.

will

Further, it has been observed that people with FM often have an inaccurate sense of their level of functioning. People frequently over-estimate their functional level by 5 or 10 points on the websites 100-point Rating Scale and occasionally are 20 to 25 points too high. (Note: If you would like to get a check on your self-perception, ask one or two other people to rate you. It is a great way to remain realistic!)

The challenges you face may make your chances for significant improvement easier or harder than those of others. Here are some important factors:

1) Severity

The impairment FM has a wide range. The bottom line for improvement: some climbs are longer than others.

2) Co-morbid Medical Issues

Some people have just one major medical issue: FM. But many have more health issues. Some of the most common other medical issues include sleep disorders, orthostatic intolerance, food and digestive problems, migraine headaches, thyroid problems and clinical depression. The implication for improvement: It’s simpler to deal with one problem, more complicated to address several.

3) $Money$

Having adequate money reduces stress as well as providing access to medical help, medications, adequate food and good housing.

4) Support

People’s family situations differ as well. Some feel understood and supported, while others are challenged to have family understand and believe them. In addition, because FM may often be severe, people can feel isolated. The level of support a person experiences varies greatly. Other people can provide practical help, understanding and encouragement; living without support creates challenges. Isolation forces people to do more for themselves and often leads to discouragement.

5) Stability

Predictability and routine are two factors that make improvement easier. The amount of stability varies from person to person. Some people with FM are able to live in one place over time and their family situations are stable. Others have to deal with several to many changes: one or more moves, the loss of important people in their lives, etc.

6) CONTROL

Taking responsibility for those things that you can control is a big factor in improvement, perhaps the most important. How we live with FM can affect symptom level and even its course.

Realistic Hope

Positive Attitude_100109aSome factors may be out of our control, but we can affect others. Those who do well share a positive attitude AND a willingness to adapt.

This is called having realistic hope. It combines two apparently conflicting parts: acceptance and belief that improvement is possible.

Acceptance means acknowledging that life has changed. Instead of living as if you were well or searching for a miracle cure to restore you to full health, people with this attitude accept that it is necessary to live differently, for now and perhaps for the long run. At the same time, they have a confidence that they can find ways to make their lives better.  

Realistic hope is different from both resignation and from the search for something that restores a former level of health. Both of these other approaches often lead to helplessness. Realistic hope, in contrast, gives people a way to help themselves and to regain a sense of control.

Related Articles:

‘F’ is for Failing Fibromyalgia Patients

Managing FM is a challenge for both health care systems and the professionals caring for these patients, due, in part, to the fact that the cause of this condition is unknown, its symptoms are not specific and there is no standardized treatment. (That’s another one of my projects: if you’re Australian, please sign the petition to the Honourable Tanya Plibersek MP – Federal Minister of Health – stressing the need for the Department of Health to provide effective protocols for the treatment of Fibromyalgia.)

A(nother) recent study which (when you hear what it was about, you will really wonder who chooses where the research funds go) examined the specific areas of the health care process that professionals and patients consider unsatisfactory. Why didn’t anyone ask us?

Supposedly, the study contributes to a better understanding of why current management of FM is neither effective nor satisfactory – is that justification for spending all that money?

frustrated-doctor Unsurprisingly, patients reported the need for greater moral support from doctors. On the other side, the medical professionals felt frustrated and of little help to patients – we don’t think about them too much, do we? Both groups expressed frustration with the delay in reaching a diagnosis and obtaining effective treatment. imagesPatients and professionals agreed wholeheartedly on one point: the uncertainty surrounding the management of FM and, especially, its origin. A study was necessary to discover this?

This is the kind of thing I was referring to in my post ‘Where, Oh Where…,’ some of this research just seems BLAH! There is nothing here that the researchers couldn’t have learned by starting a Facebook page and asking!

The only good thing to come out of this study is that it provides insight into how health professionals can support FM patients to achieve beneficial results by offering greater support in the form of specific resources such as clinics and health professionals with increased awareness of the disease. But the question is: will such a sub-standard study be taken seriously by health practitioners?

Six Word Fridays: WAVE

six word fridaysThe Six Word Friday prompt this week is WAVE – (Wave hello. Or good-bye? Ride the wave ~ literally. Or figuratively. Heat wave. Wave the flag – white or any other color!)

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!}

lrg_Ornamental_Divider__Englische_Linie

I used to be a lawyer.
I used to be a student.
I used to be a croupier.
I used to have boundless energy.
I was able to do anything.

Then an all-encompassing purple wave
took control of my life – FIBROMYALGIA!

Fibromyalgia has stolen my old life –
I am fighting to get it back!

purple wave

 

Just say NO!

It seems to me that the government departments that deal with disability payments (from all different countries) have a policy to just reject all claims (like the insurance company in The Rainmaker).

I know that every time I have applied for anything from Centrelink (the Australian version), I have been rejected; and each time, I have either had to appeal or follow-up with many, many phone calls. But each time, I have received (finally) what I was supposed to receive.

So, today’s post is going to try to make it easier for Aussie FM sufferers to get the Disability Support Pension. (If you are from another country and can write a post that will help others from your country, I am happy to publish it)

DISABILITY SUPPORT INFORMATION

 *** Please note – I am a first year lawyer, therefore I have not had much experience with the Social Security Act 1991. However, I successfully appealed the rejection of my Disability Support Pension application.

I have put this together, hoping it will help others in the same predicament.

Basically, this is how it works:

You apply for Disability Support Pension
You must have a total impairment rating of 20 points or more under the Impairment Tables.
To get a rating you must have a permanent condition that is more likely than not to persist for more than 2 years.
You receive Disability Support Pension

 Seems easy, right?

When can a rating be assigned?

An impairment rating can only be assigned for permanent conditions which cause an impairment that is more likely than not to persist for more than 2 years.

A condition is permanent if:

  • the condition has been fully diagnosed by an appropriately qualified medical practitioner, and
  • the condition has been fully treated, and
  • the condition has been fully stabilised.

What does ‘fully diagnosed, fully treated & fully stabilised’ mean?

According to the Guide to Social Security Law (Version 1.191 – Released 12 November 2012), which is run on an Australian Government site and is therefore reliable (although you should always check for updates):

Fully diagnosed and fully treated

In determining whether a condition has been fully diagnosed by an appropriately qualified medical practitioner and whether it has been fully treated, the following is to be considered:

  • whether there is corroborating evidence of the condition, and
  • what treatment or rehabilitation has occurred in relation to the condition, and
  • whether treatment is continuing or is planned in the next 2 years.

Fully stabilised

A condition is fully stabilised if:

  • either the person has undertaken reasonable treatment for the condition and any further reasonable treatment is unlikely to result in significant functional improvement to a level enabling the person to undertake work in the next 2 years, or
  • the person has not undertaken reasonable treatment for the condition and:
  • significant functional improvement to a level enabling the person to undertake work in the next 2 years is not expected to result, even if the person undertakes reasonable treatment, or
  • there is a medical or other compelling reason for the person not to undertake reasonable treatment.

This is the point where most of our applications are rejected.

I suggest that, when writing a letter of appeal (or even your first statement), you address each point clearly and concisely.

When you get past this point, you can move on to your impairment…

Assessment of Impairment Ratings

As part of the qualification for a Disability Support Pension (DSP), a person must have one or more physical, intellectual or psychiatric impairment(s) that attract a total impairment rating of 20 points or more under the Impairment Tables.

For the purposes of DSP, the Impairment Tables are tables designed to assess impairment in relation to work. The tables were revised earlier this year, so you need to make sure that you are looking at the right information. (The Centrelink representative will always ask you if you looked at the most recent tables!)

The Tables:

    • are function based rather than diagnosis based,
    • describe functional activities, abilities, symptoms and limitations, and
    • are designed to assign ratings to determine the level of functional impact of impairment and not to assess conditions.

A claimant who has a total impairment rating of at least 20 points, must also have a continuing inability to work to qualify for DSP.

Now (I have to get a little lawyer-like), as per s 6(9) (this means section 6, sub-section 9) of the Social Security (Tables for the Assessment of Work-related Impairment for Disability Support Pension) Determination 2011:

(9)      There is no Table dealing specifically with pain and when assessing pain the following must be considered:

(a)    acute pain is a symptom which may result in short-term loss of functional capacity in more than one area of the body; and

(b)    chronic pain is a condition and, where it has been diagnosed, any resulting impairment should be assessed using the Table relevant to the area of function affected; and

(c)      whether the condition causing pain has been fully diagnosed, fully treated and fully stabilised for the purposes of subsections 6(5) and (6).

The statements in BOLD are what is important to us. We can use ALL the tables to get a total of 20 as we have a number of conditions that cause our impairment!

Section 10(5) states:

(5)                Where two or more conditions cause a common or combined impairment, a single rating should be assigned in relation to that common or combined impairment under a single Table.

(6)                Where a common or combined impairment resulting from two or more conditions is assessed in accordance with subsection 10(5), it is inappropriate to assign a separate impairment rating for each condition as this would result in the same impairment being assessed more than once.

Now, I don’t expect you to read all the tables (although I did) but have a look at the headings for each:

  • Table 1 – Functions Requiring Physical Exertion & Stamina
  • Table 2 – Upper Limb Function
  • Table 3 – Lower Limb Function
  • Table 4 – Spinal Function
  • Table 5 – Mental Health Function
  • Table 6 – Functioning Related to Alcohol, Drug & Other Substance Use
  • Table 7 – Brain Function
  • Table 8 – Communication Function
  • Table 9 – Intellectual Function
  • Table 10 – Digestive & Reproductive Function
  • Table 11 – Hearing & Other Functions of the Ear
  • Table 12 – Visual Function
  • Table 13 – Continence Function
  • Table 14 – Functions of the Skin
  • Table 15 – Functions of Consciousness

This is where, in your letter/statement, you get personal. Address each and every one of these tables, if they affect you. Give examples. Explain how it affects your life. the more information that you give, the better.

Your Letter

  • Attach every piece of information that you have from any doctors (you can ask them for copies of correspondence to other doctors)
  • Write EVERYTHING down – don’t leave something out because you don’t think it’s important.
  • Try not to write emotionally – it will probably make you very upset to write down how badly you feel but, they don’t care. Centrelink needs it written down clearly, concisely, even impersonally.
  • Spell check (AND have some-one else read through the letter). Basically, Centrelink doesn’t see you as an individual, so this is a letter from one professional to another

I am attaching the letter that I sent to Centrelink as an example. It may not be perfect but it achieved my goal and I received DSP.

I hope it can help some others.

Three For One

 

My occupational therapist has me doing one of those activity diaries so I have to write down everything I do, and then put a number next to it for pain and/or fatigue.

Most of my week has WOKE UP then COMPUTER and a long, long, long arrow down to the bottom of the page (although today Hannah and I worked on the puppet theatre again – I think we only have one more hour to put in before it is completed) where I go to bed. Every now and then, there is a rehab or treatment session; but not a hell of a lot more.

Great way to lead a person in chronic pain to depression!

I have just finished editing the newest issue of LIVING WELL with FIBROMYALGIA. It is bigger and better (if I must say so myself, which I must because no-one else has seen it) than the first test issue. In fact, the new issue is the beginning of my new E-Zine format.

I will NOT be posting a link here or on my Facebook page so, if you want to read the new PAIN issue, you need to subscribe (for free)  by sending SUBSCRIBE to fibromodem@bigpond.com.

Some of the articles for this quarter are:

  • My Body – My Choice by Diane-Marie Williams
  • Summer Heat vs Winter Chills – Which is Worse? by Kim Waugus and Teresa Parmenter
  • The Happiness Principle by Dr Charmaine Saunders
  • An Introduction to the Difference between Fibromyalgia & Chronic Myofascial Pain by Dorothy Gerecke (edited by Dr Devin Starlanyl)
  • Understanding Pain by Robert Postlethwaite

The main reason that I am asking people to subscribe (because it is FREE) is so I can sell some advertising space (I need to find a way to fund myself, instead of begging from my Mommy!). I will NOT be forwarding/selling your email addresses to anyone else. I just need to be able to show my readership figures to potential advertisers, so any help will be greatly appreciated.

And for all of those on Facebook: Yippee! In less than 6 months (in fact, less than 5 months) we reached 4000 LIKEs.
Thank you all for your support – this short video is for you.

https://www.facebook.com/video/video.php?v=507286359288453&notif_t=video_processed

 

The VISIBLE Army

You may or may not have noticed that there has been a new page added to this blog – The VISIBLE ARMY. It is a page full of photos of people (and one teddy bear) trying to spread awareness about our condition.

Not everyone on the page suffers with FM. Some of the people are people we rely on to get through the day –  they are our friends, family or anyone else who supports spreading awareness of our condition.

So, please add your picture and/or the pictures of your support networks and make us all VISIBLE!

If you’re a Facebook person, I am asking you to update your status with a picture like this:

  • Open the picture template

  • Your computer will ask what you would like to do with the presentation – You want to OPEN it.

  • Once open, you will want to INSERT a lovely photo of yourself.

  • Then press 1) FILE; 2) SAVE AS, then pick a name & save it as type *jpg.

  • You can then upload it to your status and you’re ready to spread awareness

You can also post your picture to my Facebook page. All the photo are also on the VISIBLE ARMY page of this blog.

Everybody can spread FM awareness – not just people with FM!

11 Ways to Cope With a Lack of Fibro Support

If you are in chronic pain (and which of us fibroMAGICians isn’t?), it’s challenging for you and your friends and family. This is particularly true if you have an ‘invisible’ condition like FM, which is hard for other people to understand.

I know that it isn’t always easy to ask for help; or to find the money to do some of these things, but hopefully, you will find something here that is helpful.

10 Reasons To Increase Fibromyalgia Awareness

  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 fibromyalgia, 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.