When the Going Gets Tough…

There’s a lot to appreciate in everyone’s life even when things are tough…

One of the most tragic things about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon instead of enjoying the roses outside the window.

Dale Carnegie

Who wouldn’t rather be happy than sad, positive than depressed, calm than anxious?

But there’s no difference, in fact, between various emotions. It’s all just energy and the surest way to hold onto negative feelings is to judge them, analyse them or try to pretend they’re not happening. We can’t be cheerful all the time – that’s a plain fact of life – but we can be happy.

Even in the darkest hour, we can find the peaceful sanctuary that lies within each of us.

7520956914_db9ee248daIt’s picking yourself up and dusting yourself off and starting again that counts. I guess it all comes back to balance again – there must be enough in life to make our hearts lift and our spirits soar, whether it be a hug from a friend, a beautiful piece of music, a puppy or a child’s playfulness, the sight of the ocean, trees, flowers, a lover’s smile and so many more.

Conquer Your Fear

Subconsciously, we set tests up for ourselves, especially in areas that we know are our weakest. What we fear, we will always see. If you’re constantly worried about money, you will eventually have a financial crisis to deal with; if you’re afraid of rejection and loneliness, you’ll experience relationship breakdown, and if you’re afraid of tangible things such as a particular insect or object, you will see nothing else. So, the important thing is to conquer your fear before it cripples your life.

If you want to overcome a certain issue or problem, for a while, it will get worse as your negative ego struggles to keep it in a dark place. It’s a test of our resolve – will we cave in or hold strong? If it’s the former, we’re simply not ready so don’t lose heart and if it’s the latter, there will be rewards in the improvements in life that will become clear.

daemon_hammerWe humans seem to like to learn our lessons by being hit over the head by a mallet, instead of gently and effortlessly.

Learning is a lifetime’s occupation and yes, we repeat many lessons as we go along. But we must never get impatient or critical of ourselves, just start again and use the newfound knowledge to do better, feel better, relate better, live happier.

Look for the Gift

Prosperity comes in many forms and sometimes it’s heavily disguised. When life seems at its hardest, that’s when we have to look for the unexpected gift.

Have you seen the movie Serendipity? In it the woman says that in Greece, they don’t write obituaries when someone dies; they just ask one question, ‘Did the person have passion?’ It represents risk, or, taking things to another level, adventure.

See the Magic

What about magic? Is that another wishy-washy concept or something real and tangible? I (try to) always believe that things will come out right in the end – and they generally do. Try to see the magic in ordinary, everyday things; look at the world the way a child does or imagine seeing again after years of blindness.

all around you

Self-talk

When you behave in undesirable ways, feel ‘upset’ or have physical symptoms, ask yourself these questions:

  • What am I doing to create this situation?
  • Are my emotions helping or hurting me?
  • What am I telling myself?
  • What are the facts?
  • Am I exaggerating or distorting?
  • Are there other explanations?
  • How likely are my worries?
  • Whose problem is this really?
  • What have I got to learn from the situation?
  • Am I failing to trust?
  • Am I giving in to negative thoughts?
  • Am I running into the future?

Remember to appreciate your daily blessings and not find a whole lot to criticise about your life, which is really quite wonderful most of the time.

FibroMAGIC Sex

If you have FM, you may also be having problems with your sex life or relationships (if you have one!). You could be experiencing loss of libido or having difficulty with sexual performance. It’s also possible your libido is healthy, but the pain and stiffness of FM stops you from enjoying sex the way you used to.

It’s not unusual for people with any chronic illness to complain about having problems with their sex life. But a healthy sex life is important for many reasons:

  1. Not only does sex strengthen an intimate relationship, but sexual intercourse boosts endorphins. Those are the body’s natural opioids that help decrease pain and increase well-being.
  2. From my point of view (and many single FM sufferers), you are very lucky to have one – so you need to keep it up!

Talking openly with your doctor and following a few practical tips can help you resolve problems associated with FM, pain, and sex. Then you can begin to enjoy this aspect of your life again.

What Causes Loss of Libido With FM?

Some of the medications, such as Paxil and Zoloft, used in our treatment may cause reduced sex drive. If you take an antidepressant and have problems with libido, talk to your doctor. A simple change of medication or a reduction in dose may improve your sex drive and allow you to enjoy your relationships more.

Further, for some of us, having to deal with the uncomfortable symptoms of FM, including the ongoing pain, fatigue, anxiety, and stiffness, is difficult enough without thinking of being physically active with sexual activity. Learning to self-manage these symptoms with medications, exercise, and lifestyle habits may help to boost your sex life.

How Can I Have Sex if I Hurt all Over?

Some FM patients give up romantic aspirations for fear of further injury and pain. Yet being intimate with your partner is still possible. With FM pain and tender points, you need to work with your partner to find the most comfortable position during sexual intercourse. For instance, if you have FM with low back pain, you may find that having your partner on top or lying on his or her side is most comfortable for you. Or, if you’re a woman who has FM and hip pain, you might use a pillow between your knees to stabilize your body during sexual intercourse.

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(FYI: In the next issue of LIVING WELL with FIBROMYALGIA, there will be a ‘sealed’ Valentines’ Day section, showing specific positions (don’t worry, they are NOT photos of me!) that may help with different pains)

Just because you have always had sex in a particular way does not mean that’s the only way. You need to be patient, take it slowly, and find the best sexual positions that allow you to be intimate without causing further pain. Keep in mind, there is no right or wrong way to be intimate with your partner. It may be time to bring out that 1970s copy of the Karma Sutra that you have hidden at the back of your bookcase or night table – find the positions that work for you.

Can Soaking in a Warm Bath Before Sex Help?

Moist heat, including soaking in a warm bath, can help ease FM pain and may allow you to enjoy sexual intercourse – or any exercise – without added pain. Heat increases blood flow to the site and decreases stiffness.

When using moist heat, make sure it is not too warm or you can burn your skin. You might soak in a warm bath for at least 15 minutes before sexual intercourse or other physical activity to get the full benefit. You may also soak in a warm bath after sexual intercourse or other physical activity. Other popular types of moist heat include a warm shower (sit on a chair, if needed), warm whirlpool or hot tub, heated swimming pool, and a moist heating pad.

Is Stress Linked to Sexual Problems and FM?

Stress may trigger FM symptoms. Yet managing stress may help control your symptoms and balance your daily life, which can boost your libido. Stress management may include a combination of exercises, relaxation techniques (deep breathing or meditation exercises), a good sleep routine, and proper nutrition.

Exercise (including sex) releases endorphins, which are the body’s natural stress-fighting hormones, so any type of physical exercise is a good stress-control measure. Relaxation therapies such as deep abdominal breathing, visualisation or guided imagery, and meditation are also helpful in managing stress.

What Else May Help my Sex Life With FM?

If you have FM, talk to your doctor and see if medications can boost libido and/or sexual performance. Improving your overall health by treating any other medical problems may also help.

It’s a Blooming Miracle!

My grandmother used to have orchids. Every year, they would bloom beautifully and be displayed on the dining room table. In 1983, she died. The orchids stopped blooming. I tried to split them up and re-pot them to encourage them to bloom. My Mommy, uncle and I all got a pot. They didn’t bloom.

Just before my uncle had his operation, my pot grew a stalk. It’s going to bloom! And the operation went well.

Prior to getting my biopsy results, Mommy’s pot grew a stalk. It’s going to bloom! And the results were fine.

Last night, my uncle told me his orchid had sprouted a stalk. Wow! I told him that it must mean our luck was changing and more good things were going to happen.

Well, I have a major headache and I’m feeling totally lethargic. BUT don’t feel sorry for me…I’m just coming down from a massive high (natural, of course!)

I had a doctor’s appointment today, basically for more Centrelink paperwork, (they are just totally unable to organise all the paperwork to be done in one session!) at 3.30pm and was just leaving the house at 3pm when the phone rang. Yes, I answered it. It was the Centrelink lady (remember the one from last week?) Oh, great – just what I wanted: another conversation about how my condition is not stabilised!

BUT guess what? (and you’ve probably guessed considering I started a new paragraph for it) I got my disability support pension (with backpay from January)! Oh my! Giant sigh of relief mixed with joy. Thank you! Thank you! Thank you! She did say that Centrelink will check up along the way, in case I get better (I wish!) but that’s it – it’s mine. Thank you!

So yes, I’ve been on cloud nine for a couple of hours, unable to wipe the smile from my face. We (Mommy, my Uncle and I) like to think that my grandmother is watching over us. Corny, yes? But ever so nice.

Cocooning Butterflies

My house is The Fun House (as in toys, pencils, markers, etc to make the kids happy; chocolate and alcohol to make some of my friends happy; scented candles and purple butterflies to make me happy). I guess I am trying to block out the pain that the house holds within it.

But in regards to my purple butterflies, have you ever wonder where our butterfly symbol came from?

I couldn’t find a definitive answer but I like this story:

A baby butterfly is not a butterfly; she is a caterpillar – not a particularly attractive insect. After the caterpillar has grown through her skin three times, she hides herself in a dark, cool place and spins herself a safe haven – a cocoon. She hangs for days in stillness; no longer a caterpillar, but a chrysalis, preparing her secret. Then one day a head can be seen – a foot comes out. She struggles and struggles. She must pump something from her body into her wings to strengthen them.

It is tempting to help the butterfly from the cocoon, but imagine this:

One day, a man found a cocoon of a butterfly. When a small opening appeared, the man decided to help the butterfly. He took a pair of scissors and snipped off the remaining bit of the cocoon.

The butterfly then emerged easily. But it had a swollen body and small, shrivelled wings.

The man continued to watch the butterfly because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time.

Neither happened! In fact, the butterfly spent the rest of its life crawling around with a swollen body and shrivelled wings. It never was able to fly. By the struggle to free herself, the butterfly strengthens her wings enough to survive and fly.

So, after a long time she emerges, fanning her wings slowly to dry them. Then she rests for hours. Finally, she soars into the air as though she has been flying forever.

Maybe, the butterfly is our symbol because we need to build a wall around ourselves and take a break from the world as we are unable to handle life as a caterpillar any longer. There is comfort and relief in cocooning yourself from the elements that threatened you, to rest behind your defenses and not think about what lies ahead.

For a while, it might be bliss.

But sooner or later, the caterpillar is inspired toward flight and flowers, not leaves and shade. Sooner or later, she is ready to become a butterfly. Her own new version of herself.

There is a difference, however; others may help us as we struggle. In fact, we should allow them to help us. We need not do it all alone as the butterfly does; but the ultimate responsibility is ours. We have to grieve, hurt, cry, be angry, and struggle to free ourselves from our own cocoon. And one day we do emerge – a beautiful butterfly – a stronger person, a more compassionate person, a more understanding person.

Sometimes struggles are exactly what we need in our lives. Without any obstacles, we would not be as strong as what we could have been. We would never fly!

strip

SQUISHED!

Day 6 since stopping Prednisolone cold turkey (as prescribed by doctor)

Day 3 since stopping Sertraline cold turkey (as prescribed by doctor)

So, sorry guys, my fibroMAGIC is feeling a little overwhelmed!

Happy FibroMAGIC Awareness Day

May 12th was chosen as International Fibromyalgia Awareness Day as it is the birthday of Florence Nightingale. She was believed to have suffered from Fibromyalgia.

Florence Nightingale, an English army nurse during the Crimean War (1854-1856), was a pioneer in the International Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910.

Although the term FIBROMYALGIA was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times:

I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones. (Job 7:3-4; 30:16-17 – NLT)

This mysterious illness has been studied since the 1800’s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain”

MILESTONES IN FIBROMYALGIC HISTORY

  • 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
  • 1816 – Dr. William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
  • 1824 – Dr. Balfour described tender points.
  • 1904 – Sir William Gowers coined the term fibrositis (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.
  • 1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
  • 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
  • 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
  • 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
  • 1987 – The American Medical Association  recognized fibromyalgia as a real physical condition.
  • 1990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes.  The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
  • 1990s – The concept of neurohormonal mechanisms with central sensitization was developed.
  • 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia.  This was the first drug ever to receive FDA approval for fibromyalgia.  (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)

Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could find nothing wrong with the muscles. For a while, it was theorised that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.

Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years fibromyalgia was thought to be a psychiatric or psychosomatic disorder. Even today, there are a few (many?) medical professionals who insist on hanging on to this theory.

Fortunately, the 21st century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon (Bring it on!)

Hopefully, one day the history of fibromyalgia will be just that –– past history.

My Fibromyalgia Awareness Dinner

A fabulous dinner had by all…and, as promised, more photos: