Catching Up

I haven’t really checked in with you guys recently so I’m going to try to catch you up ASAP. So, what’s up with me?

Housemate

After a very long (and oh-so-complicated) 18 months, my housemate has left. We had an on and off relationship for a while which ended with us being ‘just friends.’ Anyway, it’s been a month since he left; and it’s like this great weight has been lifted from my shoulders. It had gotten to the stage where everything I said was misinterpreted by him – so we just kept fighting. I didn’t realise how hard it had become: I was trying to be so careful with what (or if) I spoke to him; whereas, when we first met, I remember how much fun, and how I used to feel when we were hanging out.Boris and flowers I really hadn’t realised how much our relationship had changed until I was away from it (permanently).

We are supposed to still be mates BUT he posted my key back to me, didn’t help with cleaning up after him and his cat (it’s taken me a month to clean everything alone!) and hasn’t wanted to talk to me all month…I don’t need friends like that!

Garage Sale

With all the cleaning, I decided it was time for a clear-out. I emptied my house out (as did some of my neighbours) and we had a multiple household sale. 20150724_182631It was huge…and very hard work.

We ran around, the night before, putting out all of our signs. Then it was up at 6am. (I had practiced getting up early for the two days prior).

Although we all made some money and got to know each other, I really don’t think I’ll be doing that again!

Million Dollar Minute

Four days later (and more practice at getting up early), I arose at 5am so I could wake up properly, get ready and go to Channel 7 studios for the opportunity to appear on Million Dollar Minute.

profileI made it (and, for those in Australia, I will be on TV on Thursday 20th August at 5.30pm). I can’t tell you what happened – non-disclosure statements and all that – but I can tell you that, if you don’t watch on the 20th, you won’t see me again!

It was great fun and I met a lot of very clever people.

After all of that, I crashed (of course) and I really have had not the energy (spoons) to do much more than sit on the couch for the last 2 weeks. However, I am building up to some more energetic activities.

Rescue Dog

With the cat (and Simon) gone, I have decided that I would like a dog. I have never had a dog before and it has to be a particular kind of dog as I live in a 2 bedroom unit with, only, a small courtyard and I can’t walk particularly fast or long distances. I would prefer to rescue a dog BUT, with my particular requirements, this may not be possible.

I am religiously perusing the rescue dog sites (as well as nearly being ripped off by 2 interstate people who were looking to re-dogs).

This is Coco - a pomeranian/chihuahua mix.

This is Coco – a pomeranian/chihuahua mix.

This is Rocky, a maltese mix.

This is Rocky, a maltese mix.

I’ll let you know how it goes.

Daiichi Sankyo Research Study

Last week, I wrote about the Daiichi Sankyo research study. I have decided (after consultation with my GP) that I will be signing up. The first part is a blind study so I’ll be telling you about how I feel, if I am accepted – I have to give up my Lyrica and Sertraline (scary!)

LIVING WELL with FIBROMYALGIA

The next issue of LIVING WELL with FIBROMYALGIA is due out September 1st. It has been a VERY difficult issue as our contributors appear to be slowly disappearing so, sadly, unless I can get some more volunteers, the September issue will be the last one. If you want to write for us, please email me at contributions@fibromodem.com.

Now you’re all caught up. What’s going on with you?

Untitled

Living Well with Fibromyalgia – Invisible Tears

For those of you who haven’t seen it, the last issue of Living Well with Fibromyalgia is now available to the general public. For next time, however, you can have it delivered to your inbox by subscribing for free. But, that’s not the reason for this post…

Uncle Sam

The next issue of Living Well with Fibromyalgia will be out March 1st with the theme: Invisible Tears. I chose this theme because it resonates so deeply with me, as I know it will with so many of you. Would YOU like to be a part of it?

I’m looking for people to contribute (people like you) to the March issue. You can contribute poetry, photos, articles and/or stories. Articles and short stories must be under 800 words. All contributions must fit within the Invisible Tears theme.

I also ask that you send me a short biography about you and a photo (as well as any pictures you’d like to accompany the story). If you have a blog/website and/or Facebook page, I am able to link the piece back to you.

So, if you would like to see your name and work in virtual print, please send your contributions to contributions@fibromodem.com by February 1st 2015.
I can’t wait to start reading what you have to write!

Untitled

It’s March (almost)

Suffering with a chronic condition can be extremely frustrating, making you feel lonely and misunderstood.
Developing and nurturing a support system can make some of these horrible ‘side effects’ just that little bit better.

BUT do you know the best places to locate these oh-so-valuable resources? That’s what the latest issue of LIVING WELL with FIBROMYALGIA is about… and it will be out and in your InBoxes tomorrow.

Have you subscribed? It’s free, fun and might actually help you.

Subscribe now by clicking here.

March Cover

LIVING WELL with FIBROMYALGIA (December Issue)

The latest issue of LIVING WELL with FIBROMYALGIA will be out and in your InBoxes tomorrow.

Have you subscribed? It’s free, fun and might actually help you.

Subscribe now by clicking on the cover picture below.

cover

20 Days to Go…

I’m asking YOU to submit your own cover photo to be the next Covergirl/guy of LIVING WELL with FIBROMYALGIA

ad

Entries will only be accepted at contributions@fibromodem.com between September 1st 2013 and November 1st 2013.

Please have a look at the terms and conditions and get clicking!

Could YOU be our Next Covergirl/guy?

Today, the latest issue of our E-Mag LIVING WELL with FIBROMYALGIA came out.

And for the first time, we had our first cover-girl with Fibromyalgia…

cover

So, I started thinking (again!) and guess what? I’m asking YOU to submit your own cover photo…

ad

Entries will only be accepted at contributions@fibromodem.com between September 1st 2013 and November 1st 2013.

Please have a look at the terms and conditions and get clicking!

♩♫ Lyric(a) Writing is an Interesting Process ♫♩

So Week 3 started today…my body aches just a little more each day, the fog is not lifting (which I really thought it would), and my face hurts beyond words.

doses

It doesn’t help that I had to go to the dentist for a Crown preparation so last night was spent with some frozen vegetables attached to my cheek.

And I’ve hit exhaustion – I think I have over-loaded myself with the Thunderclap campaigning (nagging), blogging every day, reminding contributors for the next issue of LIVING WELL with FIBROMYALGIA, tweeting, my shop and my FB page – it’ll all quiet down after May 12th but right now, I keep getting anxious that I’ve forgotten something to do. spireI’m also trying to get ‘them’ to light a spire (that we have in Melbourne) in PURPLE for May 12th (looking forward to a night-time picnic with Thais (did I tell you she’s back?) under the spire – anyone else coming? You can help by emailing the appropriate people)

I’m also trying for Sydney Harbour Bridge and the Opera House but I think I’ve left that one too late! (If you want to help with this one: tweet to @VividLive  Niagara Falls will B PURPLE from 10:15-10:30PM EST on May 12 for #Fibromyalgia Awareness: can we light up the Bridge & Opera House?

sydney opera house Sydney_Harbour_Bridge01

So I haven’t had a chance to FEEL anything. I just want to rest BUT I don’t feel I can as this is the lead-up to Awareness Day (I can rest afterwards, right?).

I try not to nap during the day (no matter how bad it gets) but today, I fell asleep for 4 hours.

My body just wants to stop – but, as you can see, I have no idea if it’s medication related or just life!

Blaming Fibro Fog?

8 Other Reasons You May Be Forgetful…

forgetfulSo, you know you were supposed to be doing something – but you just can’t remember what it was. Or, in the middle of a conversation, you can’t remember the words you need. Don’t necessarily put it down to age, working too hard, having an overloaded mind or Fibro Fog. There are other common health problems that can cause forgetfulness.

High Blood Pressure

The REGARDS study in the US found people with high blood pressure perform worse in memory tests and their memory shows greater deterioration over time. The study involved more than 30,000 people over four years. “The increase in blood pressure can mean structural changes in the blood vessels, making them thicker and making it harder to get blood around your body,” says Dr Gavin Lambert, from the Baker IDI Heart & Diabetes Institute. “As a result, you can get organ damage. That can be in the brain as well and affect your recall and cognition.” So eat a balanced diet, maintain a healthy weight, exercise regularly, don’t smoke and if you are on blood pressure medication, take it as prescribed.

Chemotherapy

A study at Stanford University in the US found breast cancer patients who had chemotherapy suffered some impact to the parts of the brain responsible for memory and planning.

“One of the potential undesirable side effects of chemotherapy is what we loosely call ‘chemo brain’ or ‘chemo fog’,” says Dr Helen Zorbas, CEO of Cancer Australia.

“It can be mild or more significant in effect. While there’s nothing that can be done to help it, I think just knowing it’s a common side effect is important for women and they should be reassured that in most cases it’s mild and self-limiting.”

Menopause

A 2008 study at the University of Illinois found a link between hot flushes and poor verbal memory. The study followed other research that found about 40 per cent of women report becoming more forgetful around menopause.

“The more hot flushes a woman had, the worse her memory performance,” says researcher Professor Pauline Maki. Maki found women whose hot flushes disturbed their sleep suffered even worse memory problems.

Dr Elizabeth Farrell, consultant gynaecologist with Jean Hailes for Women’s Health, says while there is no conclusive evidence that menopause triggers memory loss, women do report feeling more muddled sometimes.

Thyroid problems

If you have hypothyroidism – an underactive thyroid – your thyroid gland doesn’t produce enough thyroid hormone. This leads to a slower metabolism and tiredness, and can lead to some forgetfulness.

Hypothyroidism is more common after the age of 40 and affects about six to 10 per cent of women and a smaller number of men.

“When you have a medical condition that causes fatigue, it’s easy to become forgetful. But when hypothyroidism is treated, people recover well and memory recovers, too,” says Dr Ronald McCoy, a spokesman for the Royal Australian College of General Practitioners. Hypothyroidism can be treated with medication.

Long-Haul Travel

Memory can start to be affected after a flight lasting more than four hours – such as a Melbourne to Perth trip, McCoy says. “It’s similar to people having a knock on the head and suffering short-term memory loss. They recover but may not remember what happened at the time,” he says. “People function well at the time but the day later they have problems recalling what happened at certain times.”

Pregnancy

It’s true – pregnancy can affect memory. “Well practised memory tasks, such as remembering phone numbers of friends and family members, are unlikely to be affected,” says researcher Dr Julie Henry, who was involved in a University of New South Wales study that found pregnant women do suffer some temporary forgetfulness.

“It’s a different story, though, when you have to remember new phone numbers or hold in mind several different pieces of information.” She says the upheaval that comes with pregnancy may be the reason.

Vitamin B12 Deficiency

“Vitamin B12 is essential for normal neurological function,” says Denise Griffiths, a spokeswoman for the Dietitians Association of Australia. “Deficiency of vitamin B12 can result in cognitive changes, from memory loss to dementia.” Scientists believe vitamin B12 may safeguard the myelin sheath – a layer that insulates our nerves. If the sheath is damaged it can affect the transmission of messages to and from the brain.

Alcohol

“Alcohol prevents the storage of the short-term memory into the long-term memory,” McCoy says. “So people drink and function but can lose memory of what happened during the time they were drinking. ”Too much alcohol has a negative impact on the hippocampus – a part of the brain involved with recording and storing memories.

 

Reprinted from Volume 2: Issue 1 of LIVING WELL with FIBROMYALGIA

Want to subscribe for free?

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!

Where are You Going in 2013?

Reprinted from the December issue of LIVING WELL with FIBROMYALGIA.  
Elissa TomasiniWritten by Elissa Tomasini, who also writes a blog about managing chronic pain with resources & support, and information about health coaching: http://chronicpainjournals.com/

I absolutely love making goals & creating plans.  It inspires me to dream & make positive changes to my life.  I can take time to reflect on what in my life is or isn’t working, & look at ways to move in the direction I want for my life.

goals 1

I find that making goals in life works best when it starts with listing out my own values.  This gives me a framework for deciding where to invest my time, & when it might be best to change a course.  Because my values are also about relationships, this helps me to include people in my goals, not just concrete goals around accomplishments.  I include values of self-improvement & character traits I aspire to.  Though these may not be as measurable, my personal integrity is more important than the accomplishments I make.

I have a list of seventeen top values that I have revamped over the years.  My overall mission statement is:  I will strive for growth, healing & deeper spirituality, where I can truly love others, giving joy, grace, & peace to those I meet.  Some of my values include building strong relationships with family, friends & neighbours.  Others are about personal traits such as saying I am sorry, being forgiving, having fun & living a life of integrity.  I also include fitness & health, making a difference, being financially secure & helping people in need.

goals 2Next I start with a free-write (brainstorm) of goals & hopes of what I would like to accomplish.  This might be short-term or long-term ideas, as well as self-improvement type of goals.  I try to avoid thinking too rationally when writing out my dreams, as this is something I will do later.  For some, this might be better done by writing in paragraph form visualizing the life they wish to have, others prefer lists.  It can sometimes help to look around at people you admire, & what are the traits & actions that draw you to them.

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

goals 3One thing to remember with goals is that it is about progress, not perfection.  In 2012, I had a list of about 40 goals & I accomplished about 60% of them.  Some of these goals were minor, such as putting pictures in frames & going through donations.  Other goals were more significant like starting my blog & going back to yoga class.  I never did finish doing touch-up painting around the house, but I am okay with putting this off another year.  Even though I didn’t finish everything on my list, I can see that the year 2012 was filled with some new adventures & progress in areas that matter to me.  The other goals I didn’t finish I can evaluate whether this is something I want to reconsider in the next year.  Fortunately, 2013 brings new opportunities.

I am excited for what 2013 can bring & my personal goal of implementing the 15M plan.  For 2013, I am going to focus more on making life style changes in increments.  The 15M plan allows me to make progress even in the more difficult health days, as I focus on spending 15 minutes on the desired activity each day.  Often when I am tired or feeling a great deal of pain, I lay on the couch a good part of the day & isolate.  If I can focus first on 15 minutes of some type of exercise, it is a goal I should be able to attain most days, resulting in less discouragement & better health.  When I am feeling good, I will most likely do more, but on a bad day this can help me shift gears.   I will add other areas that I want to progress in such as writing, family time, cooking & doing chores.

Like many of us, I have goals for improving my health in 2013.  I plan to do some experiments with the types of food I eat to see if they may be adding to my symptoms.  I also will be doing health coaching for other people who want to improve their health.  I hope to be able to make an impact on people struggling with chronic health problems & to give hope.  I want to strive for more consistency in my life, & learn to work around the tough days.

Making goals can be a simple process or something you spend weeks processing & planning.  The most important thing is to make some progress.  Taking 15 minutes to write down 10 goals is a great beginning.  For the artist among us, one can draw or clip out pictures from a magazine instead.  You can post the list on your refrigerator or bathroom mirror.  Others may prefer to spend some time evaluating last year, writing out values, & creating a detailed plan for 2013 like I have done.  Finding a buddy to share it with might help keep you motivated & encourage a friend at the same time.

May 2013 bring you some great learning experiences & opportunities.  May you see an impact towards the values you hold dear & be an encouragement to those in your path.

goals 4