Working With Fibromyalgia

I’m lucky(?) enough to have received a disability support pension and have the (financial and emotional) support of my mother but not everyone is so fortunate. Many of you have to deal with the added challenges of going to work (and I really don’t know how you  can do it – so huge kudos to you!)

While any job can be stressful, when you add in FM, it can almost be intolerable. Luckily, Dr Steven Yen from EverythingFibromyalgia.com has a few ideas about how to make your office environment friendlier to your symptoms.

1.)  Take Your Seat:  Many things can be done to make sitting more comfortable. There are a variety of seat cushions that help support your back, and there are even seat cushions that have heat and massage!  Consider swapping out your office chair for an exercise ball for short intervals during the day. Many FM patients find this soothing, and it will also help strengthen your core and help correct some physical problems that contribute to FM pain.  

2.)  Plant Your Feet Firmly on the Ground: You need to ensure you have good posture when you sit. Poor posture can cause structural issues that exacerbate the pain of FM.  Also, be mindful of your footwear.  For people who stand all day, that last point was a “ no-brainer.” Unfortunately, many women in office environments think that because they aren’t standing wearing high heels won’t affect them… this is not true.  When you have Fibro, you have a higher sensitivity to foot pain. If you absolutely must wear high shoes, make sure you have a comfortable pair with arch support at your desk to slip into during the day.  Many people find the simple act of changing shoes a mental and physical refresher. office-furniture-removal

3.)  Take Stretching Breaks: Once an hour take a small break, at your desk, to do a simple stretching activity.  Something as simple as gently stretching your head from side-to-side will get your blood flowing, and help combat fatigue and Fibro-Fog. Also, get up and walk while you can.

4.)  Pay Attention to the Temperature: Always dress in light layers, always bring a sweater, and always have some kind of heat source (i.e. hand warmer) at your disposal. Often, businesses keep their buildings unreasonably cold, even in the summer, and that can cause Fibro to flare.

5.)  Get Ergonomic: Did you know there are even ergonomically designed pens that help with wrist and hand pain? While there are many items on the market that can make your workday less painful,  something as simple as lowering your monitor can cause dry eyes and neck pain.  Speak with an Occupational Therapist, or even your doctor, about simple, cost-free tips. For Example, don’t hold the phone with your shoulder! It causes neck spasms! Hold the phone with your hands… You will thank me!

6.)  Talk to HR- You need to be your best advocate. You need to take care of yourself, and asking for ideas to help you be the most productive employee you can be, is not a sign of weakness.  There are a lot of accommodations you may not even be aware are available to you. Please, save the following link- it is from the Job Accommodation Network, and it outlines what may be done within the workplace. http://askjan.org/media/Fibro.html

Ideally, if a job were causing you physical and emotional distress, you would be able to find a new position or take a reduction in hours. Unfortunately, not all of us can do this.

Many people are scared about job security and don’t want to rock the boat; however, you need to take care of your needs, and never feel guilty about it!  By taking a proactive approach to your work environment, you are empowering yourself.

Finding your inner power is inspiring, and helps you heal!!

Fierce and Fabulous (and Depressed!)

Alisha - Invisible FOne of our fabulous FCK bloggers has been presented with Fighterzine‘s  first Fierce Fabulous Fighter Award: Alisha Nurse from The Invisible F. Alisha is a very worthy recipient of this award – you’ll have noticed I re-blog her quite regularly.

In fact, even before I found out Alisha was a Fierce Fabulous Fighter, I was going to let you read this one:

Depression Awareness Week

It’s officially Depression Awareness Week and I want to ask you to take time to either learn a little bit about this illness, or help raise awareness.

Photo by Gloria Williams

Photo by Gloria Williams

For a very common illness which will affect 1 in 5 people at some point in their lives 1) there are still ALOT of misconceptions about depression, and 2) people don’t realise the seriousness of it.

In case you didn’t know and you’re asking me now, what is depression?

It is the feeling of persistently feeling sad for more than a couple weeks accompanied by other symptoms. Read more about it by clicking on the link above.

Who gets depressed?

Depression can affect anyone. It does NOT discriminate. It doesn’t care who you are, what job you have, how qualified you are, or that you’re determined to be happy. You might be at risk of getting it if:

  • It already runs in your family
  • You have low self esteem
  • You live with a long term illness

But you can also get depressed for no reason. Perhaps you’re one of those affected by a chemical imbalance in the brain, (particularly of the neuro-transmitter serotonin which regulates our moods). Even if you don’t naturally have a lower amount of serotonin in your brain, if you get depressed it may lead to lower levels of this neurotransmitter, hence, the need sometimes for anti depressants.

So you see, it is a real illness caused (or causing) physical changes in the body. It is not imagined, it is not feigned and there is no one remedy that works for everyone.

Make a difference

Stigma attached to depression often causes people to hide. And if people are hiding they cannot get the help they need to get better.

Instead, many give up.

More than 70% of recorded suicides are committed by people with depression. In the UK and Ireland alone  more than 2 young people commit suicide every day.

This reality came back to haunt me this week as my friend almost ended a statistic. But thankfully, she belongs to the charity Depression Alliance which provides key volunter led support. We were able to get her medical help, and she remains in hospital recuperating.

I end now how I started. By asking you to do something to further this cause. Share some knowledge, learn about it, start a discussion, volunteer or donate to my fundraiser to raise money for Depression Alliance. It’s imperative to me because it is something I’ve lived since childhood.

I too have hidden, been ashamed, laid in hospital recovering from failed suicide attempts, been criticised and scorned, even by those meant to care for me. It’s taken me a long time to get to this place of talking openly because I realise someone has to, even if it’s not easy. Even one life saved is a difference made. The life saved could be someone you know even.

Thankyou for reading with an opened mind.

Gentle hugs :)

N.B. The Depict Depression fundraiser art competition is still open. Prizes include Estee Lauder gift sets, book vouchers and Vicky Scott artwork. Deadline Wednesday 17th April 2013.

FIGHT HARD vs FIGHT SMART

We Fibro-Fighters face an uphill battle in our fight against FM so when I read this blog post, by Terry Springer of FibroTrack, I wanted to share. I found it to be very ‘Rocky’-like and motivating…

determinationMany sceptics and members of the “Fibro Ignorant” feel that individuals with fibromyalgia could recover if they would only try harder. They observe that many with fibro do not exercise, are significantly overweight, have terrible diets, live a fundamentally unhealthy lifestyle and appear to be doing very little on their own to get better. They conclude that laziness and apathy are the root cause.  Many believe that individuals with fibromyalgia have brought the condition on themselves and they suffer simply because they refuse to do whatever is required to get in shape and get healthy.

It’s easy to understand why the fibro ignorant come to this type of conclusion. Our society and culture view hard work as naturally leading to positive results. Individuals who put forth massive effort and leverage extreme tenacity are rewarded with big success. This is true in sports, business and many aspects of life in general. Determination and fighting to our utmost ability for things we desire are core values to our culture.

The observation by many that people they know with fibromyalgia do not appear to be fighting hard is both correct and in error. There is no denying that a percentage of individuals with fibromyalgia do not exercise, are obese, eat a horribly unhealthy diet and in fact do little on their own to try to get better. But why is this? There is no one answer. For some, it boils down to the effects of chronic pain and depression plus a lack of education and understanding about what is going on in their bodies and actions they can take to try to correct it.

images (1)For most however, the reality of fibromyalgia is that just living day-to-day with fibro is a monumental effort. Fibromyalgia leaves its victims with a very limited amount of normal “go juice” to distribute on a daily basis. Exceeding the limited amount of energy and focus that patients have available often results in a giant fibro flare-up. Pushing harder and trying to use tenacity frequently backfires bringing on the opposite result from what is desired!

Yet, not fighting hard to do all of the things that make up an effective self-management effort means that the odds of a patient recovering are minimal. Getting better is up to you.

This is a terrible Catch-22! Fighting too hard will make you worse but not fighting hard enough will prevent progress. How do you deal with the reality of not having enough energy and focus to accomplish daily everything you need to be doing? Is it impossible to fight hard enough without pushing too far?

The title of this blog posting is a trick. Fighting hard and fighting smart are not an either/or proposition! With fibromyalgia, the two tactics should be simultaneous and symbiotic. imagesEffectively fighting smart will increase your ability to gain results from your limited capacity to fight hard by ensuring that your hard fighting is targeted in the best direction. You must get everything possible out of your limited ability to fight hard!

Well-structured systems and defined processes form the core operating principles for all successful organisations. They are required to achieve the best results when dealing with any complex ongoing effort. Corporations, government and high-achieving individuals all rely on quality systems to help them best direct their focus and efforts. If you are fighting fibro and you want to recover – you must do the same!

fibrotrack-logoI hope you will check out the ultimate tool and system for fighting smart – FibroTrack.

But regardless, if you wish to make the most of the fighting hard you can do, you need systems and well-defined processes to guide you in fighting smart!

See what I mean? Don’t you just want to start fighting (again/more)?

Let’s Start with a Blank Slate…

One of the worst symptoms of FM (along with the fatigue) for me is the Fibro Fog.

Most worrying to me is my loss of words. I can’t find the words in my brain anymore. (This was most disturbing to me as I had recently completed by Bachelor of Laws with Honours, so normally my brain is extremely organised). Sometimes I can feel where they are in my head but I just can’t reach them.

What seems like a long time ago, I saw this cartoon, which really describes how I feel most days:

fibromodem

This is also where my username and other things to do with my site came from; so when I came across this post from Alice in Fibroland, I just had to share it…

Pants, shoes, and other useful things

I knew fibromyalgia had taken over my brain when I walked halfway out my front door, ready to head to work and errands, with nothing on my lower half but undies and socks.

How could I have forgotten such important and useful items as pants and shoes?  And I didn’t just forget to put my pants on that day; I had no memory of choosing pants to wear, ironing them, or laying them on my bed while getting other things ready.  If you have fibro you are probably nodding your head and laughing in understanding, because you’ve been there!  Whether it’s your pants or something else, fibro fog is a constant reality.

And who else is annoyed with the name fibro fog?  To me, it’s more like fibro blank slate.  Or fibro deep space.  A fog implies that the information is there, but something is blocking it.  Sometimes I feel like the details I want my brain to access have been totally erased or just floated away.

Of all the ways in which fibro has affected me – between the crushing fatigue, the muscle spasms, and the neurological oddities – fibro fog is the most frustrating.  I miss my brain.  I miss being able to work out a problem with measurements when cooking or quilting.  I miss have an in-depth conversation on complex political issues with my husband.  I miss being able to enjoy a book because I can’t remember what happened in the beginning or focus long enough to finish a page.  I miss… um, what was I talking about?

Do you have any nutty fibro fog stories?

Feeling Debilitated? Me, too!

Yesterday, I went to the Melbourne Garden and Flower Show – it was fabulous…but a hell of a lot of walking for a VERY long time. So, of course, my body is avenging itself.

Back in April, we ran a poll to decide the best word to describe the ‘more-than-fatigue’ we feel:

Overwhelmingly, the answer was DEBILITATION!

So, it was very timely that I read this post by The New Normal:

So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

Chronic Comic 155It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses – crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone – I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.