Pains of initiation and pains of dis-ease


Being a chronic Pisces (lunar Cancer & Cancer Rising) does not make for an easy life but when I get ready for Alchemy and Magick then I love my stars with all my dust. The descent into the dreamworld is as easy as taking a breath and when preparing to facilitate a process, I have a valid excuse to be there so it is free fall. Our personal genius, our truest calling, our dharma is a precious precious gift!!!
It is fascinating to me that in my most authentic state, my (fibromyalgia) pain is in fact at its worst. It challenges the myth that when we do what we love we have spontaneous remission. Sometimes or for some of us the archetypal warrior imagery is more apt. The more the warrior is closer to victory, the greater the pain of the gaping wounds inflicted along the journey. The ego will do many “stranger things” to prevent you from manifesting your deepest calling – your dharma.
Know thyself is a critical armour to understand the difference of the pains that emanate from dis-ease of inauthentic living and the pains of initiation into your highest calling,
Beloved Know Thyself!

Somewhere between Denial and Depression


Fibromyalgia awareness 2018
My lifelong experience with fibromyalgia has seen me slide up and down this continuum. My energy is often spent trying desperately to avoid these two extremes.

At times I find myself trying desperately to remain positive and focus on what I can do. I walk around repeating Hawking’s words do not look at your feet look up at the stars. I avoid the fibromyalgia groups like the plague for fear that they will bring me down. I mumble releasing mantras and try to let go of things like grief and fear. I focus my attention on all those many blessings that I am so deeply grateful for.

If all goes well it works and I come very close to that elusive place called normal. Inevitably though I cross the invisible line of denial. When I end up in that place I make less intelligent decisions regarding my physical strength and capacity. The hype of believing in oneself and that all things are possible lead you to push yourself beyond reason. In the process I hurt something, reinjure something and successfully manage to bring on a fibro flare which feels like my body is taking revenge on me.

At other times and often when I am remembering what I was capable of, I remind myself that this condition is real and if not managed it becomes debilitating. I notice how I move around like a 70 year old. I feel despondent with all my half projects and all the things that I never got started. To cope with the disappointment and sense of failure, I remind myself of the nature of this condition and what it can do. In some ways I find comfort in others’ stories knowing I am not alone and many people have this battle too. It remains however a very dangerous place to be because crossing the fine line that leads to depression happens so quickly. In that place life seems unfair and cruel and punitive. All the things that I have had to give up and all my plans that I have to pack away impact the psyche in an altogether negative way and you spiral down into a very gloomy place. It is a battle to get out of this place but over the years one develops the muscle for it and you somehow manage to make it out.

Managing the psyche takes as much effort if not more than managing the body. Navigating the perils of denying your condition on the one hand and being overcome by your condition on the other requires energy. Harmony has always been my sacred word. Harmony with self, others and the earth is a life goal. Sliding up and down between denial and depression is one aspect of the up and down nature of fibromyalgia. On the 12th of May is fibromyalgia awareness day. On that day I may be up or I may be down or I may be sliding somewhere between denial and depression. In this moment of slight stability I am recording my awareness day post.

#fibromyalgia #depression #denial #awarenessday #invisible #cfs

Fibromyalgia Awareness Day 2016

The things I speak about in private groups only ….

I shared many posts over the last year about the amazing support I get from my family. Those of us who deal with severe conditions like fibromyalgia, ME, CFS etc all know that the single most important need is support from your family. The big things like the like financial support for my needs to the small things like lifting the girls when wrist pains hits heavy are all incredible ways of helping me live a normal-ish life. I am deeply grateful to David, Dominique and Alexandra for being a fibro’s dream team.

On the other side of fibromyalgia are the shadow lands of the things we usually only speak about in the small groups with private settings. In these groups we share our grief for the things we have lost, our resentment to those who still regard our condition as invisible, our frustration with the medical industry and our great relief from medication that is still illegal. We share in these groups with other fibros because we know that our sorrow, shame and anger will be understood and not turned against us. In these groups we know there are 19, 27, 32 and 47 year olds who also climb a staircase slower than 75 year olds. There are other 40 year olds who are exhausted after a pushing a shopping cart for 20 minutes. There are 30 year olds who also can’t hold a washing basket without finger joints aching with pain. In these groups, I am not judged for being unable to do things other 47 yr old women can.

I write and advocate quite a bit for authenticity and embracing the parts of ourselves that we are less proud of. I must confess however that I share very little about the nasty side of fibromyalgia and chronic fatigue. There are a number of reasons for that. Firstly, there was a time I did not get the support I enjoy now and I learned it was easier to hide my pain than to be accused of and belittled for all sorts of things. Secondly, I figured that talking about it will be seen as moaning about it and I did not want to be a fibro-nag. Thirdly, I tried to avoid the recommendations to doctors, fibro-specialists, shamans, gurus and wonder juices that will cure all my symptoms. At some point I thought that I needed to stay positive and then I could train my brain to think I overcame fibro. Having experienced some symptoms since the age of 12, I am tired of my fibro and I just don’t want to write about it or talk about it. The reality is that there are times when I have minimal symptoms and I actually think I am over it. Just when I think fibro is so last year a flare strikes and I am reminded I have fibromyalgia.

The result of hiding the fibro-nag is that I help to make my fibro invisible. I join the conspiracy and I go about my business with a smiley face and praise hands. The only people who know the visibility of my fibro are the people who live in my home. They hear the thud when I pass out with spastic pain. They see the dead man Raynaud’s feet when the subzero socks come off. They know the impact of blinding fibro headaches which is not the same as migraine. They see the infrared lights to treat neck and back pains. They hear the gasping when sleep apnea suffocates me. Only they see it and only they hear.

On this fibromyalgia awareness day I carry the awareness that outside these walls my fibromyalgia is invisible. I have made it that way. The need to look and be normal has made me side with the conspiracy. This is not a bad thing and I am not wrong. It just is that way and I have come to this awareness. With this awareness I can consider how I want to change things or how I want it to stay the same. Harmony is my sacred word and it will guide me in how much I want to share and contribute to making the visible be visible (I meant that). Somewhere between the need for respite and the desire for awareness I will find that harmony.

Thank you for reading this and contributing to awareness on this Fibromyalgia Awareness Day, 12 May 2016.

The Princess and the Pea diagnosed with Fibromyalgia

fibro princessOf all my favourite childhood stories, The Princess and the Pea certainly ranked high up there.  I am sure it was one of those Ladybird books with a gold covered spine.  Somehow it remained on my bookshelves for many years.  I remember my sisters reading it to me and then at some point, I read it on my own – over and over!

For I am a real princess!

“Well!” said the queen, “We will see about that!”

The past few nights have been very cold in South Africa – at least for those of us who have never seen snow and don’t have central heating and so on.   After a long spate of doing really really well, my fibro symptoms have flared up with a vengeance mainly due to the cold.  Last night I added yet another layer of linen to the bed.  The duck and down duvet is now nestled between several layers.  Between the mattress and myself are several other layers to ensure that the cold does not come up from the ground with its bony fingers and long claws to dig into my fibro and myo parts causing algia all over!

I looked at the bed and I thought – 50 feather beds – Just like the Princess and the Pea!  I was toasty warm last night and ever so grateful.  The joint pains woke me up periodically, as they always do but I could get back to sleep quickly given all the feather beds.  I awoke this morning with my normal joint discomfort.  Sitting on the feather beds and  trying to mobilise my stiff joints, I thought about how lovely and warm the bed was but how I ached all over.  Just like the Princess and the Pea!  That’s when I realised it “Oh my word! the princess had fibromyalgia!”

It finally made sense after all these years.  How on earth could a young woman sleep on 50 feather beds and be black and blue all over?  Easy! Ask any Fibro sufferer and they will tell you – it happens every day and its much worse in the cold.  One pea under fifty feather beds is all you need to wake up black and blue all over.  On a cold, rainy night we don’t even need the pea!

So on that dreadful night when the wind howled and rain poured down like sheets, a real princess had lost her way.  How did she manage that you wonder?  Simple, the fibro fog caused her to lose her sense of direction and she wondered far far away from the castle to another kingdom.  It’s a bit like I wandered far far away from the high power corporate sector to this fabulous spiritual retreat time.  Every fibro warrior will confirm how quickly you can wonder from normality and enter the dark night of the soul – the woods!

The young prince opened the door to find the beautiful princess standing at the door and all she could say was “I am a real princess!”  Definitely, chronic fatigue syndrome setting in there.  A 48-hour recovery period is what the poor dear needed.  The stress of a long night in the woods would have triggered a major fibro flare.  Falling into the prince’s arms was clearly the result of the migraine headache reaching its peak.

Now clearly the beautiful princess did not look very appealing to the eye.  Fibro warriors can confirm that and so can my children.  Clearly, the prince loved her unconditionally and saw her with the eyes of his soul rather than the egoic desire of lust.  The queen, sadly, was looking at the not-so-pretty woman from a less evolved level of awareness.  Thus, she devised the master plan to test the authenticity of the princess’s claims.

Perhaps the demented girl had made the whole thing up. Perhaps she was just seeking the attentions and affections of the prince.  Perhaps it was all in her head.  There had to be a way of proving these claims.  Many a fibro-warrior can attest to the doubting of their experience by those who need to see scars and wheelchairs before they believe there is pain.  Well, thank goodness for the pea.  A simple pea flattened under the feather beds that gave the queen her peace of mind. The  scars were visible and indeed the woman was now a real princess.

It has taken a long long time to finally figure out how the pea caused the princess to be black and blue all over.  Now that her widespread pain and tender points proved she had Fibromyalgia, I understand my fascination with the Princess and the Pea.

Now I know that

“I am a real princess!”

fibro princess crown

FibroGuide Resource

A self care programme for fybromyalgia patients

Fighting Fibromyalgia

neck pain

Thanks to Seeking Equilibrium, I discovered FibroGuide. FibroGuide has a modules with great information for those newly diagnosed and those of us who have had fibromyalgia for what feels like forever. You take a simple quiz and it points you to the modules you may find most helpful. Examples of modules are Understanding Fibromyalgia, Fibro Fog, Being Active, Communicating, Sleep, Pacing Yourself, and more. It’s got a lot of great information and I really like how it’s organized. With the quiz, you are quickly pointed to the resources you may find most helpful and don’t have to go digging through a ton of information for the tidbits that are the most relevant for you. I don’t know about you, but my attention span is short and my thoughts are easily scattered so I found the way this site is organized to be very helpful. Check it out!

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Living with Fibromyalgia – my fibro story

This Fibromyalgia awareness day seems like a good day to share a little of my experience of living with and learning from fibromyalgia.  I should tell you what fibromyalgia is. From the definition it means pain in the muscles and tissue. This does not nearly begin to describe the many challenges people living with fibromyalgia face. The research yields ever changing theories to explain the many symptoms. The lack of a conclusive test provides those who lack compassion with absolute evidence that “it is all in our heads” and we are “just looking for attention“. Fibromyalgia people will tell you that the greatest challenge by far is a lack of support and acknowledgement by those we most need support from. This poster provides more of an understanding than the definition ever could.


My diagnosis process only came to some form of clarity around September 2014.  The rapidly moving pain and the intensity of the muscle twitches alerted one of the many medical practitioners to the fact that I was struggling with fibromyalgia. I learned about tender spots the painful way.  The physiotherapist was applying ultrasound to my hands and arms when I kept flinching from the “shocks”.  I thought her machine was faulty but she kindly informed me about tender points. Tender points is another type of diagnostic tool used by less progressive practitioners.  They also say the pain must last for at least 3 months.  Mmmmmm – how about 34 years!!!!!

I have realised that I probably had fibromyalgia for the better part of my life.  In my teens I struggled with severe spasms in the abdomen which eventually resulted in an emergency major operation at the age of 16.  The cause was recorded as prolonged periods of nervous tension and anxiety.  While the operation managed to save all the organs and stitch them back into place, I have struggled with abdominal pain and spastic attacks ever since.  The gastrointestinal specialist referred me to a psychologist to deal with the anxiety and panic attacks which manifested as tremors, sleep apnea and sweats.

Throughout my life I struggled with migraine headaches.  The horrible ones that cause you to throw up and pass out if you don’t get help in time.  Too much sun, over stimulation, stress and other things can set it off and leave you quite helpless.  I have had a few narrow escapes with migraines that have left me in harms way.  When I was younger and I did not know how to manage myself I drove home with a migraine and probably had the same competency as a drunken driver.  I passed out as my husband opened the door.  I put myself and so many others in danger that night.  The worst of my narrow escapes was on an evening where I was at a conference in my very first job.  I was a size 6 at the time and worked for a giant of a man.  He observed my tiny frame and my deteriorating state as the migraine took hold of me through the dinner.  He took full advantage of my vulnerability and insisted we complete a report in his room later that night.  Yes you guessed it – he saw a rape opportunity!   I found myself on the bed with his hands under my clothes.  I was passing out from the pain and he was well aware of it.  A miracle transpired and I “came to” just enough to realise what was happening.  Angels guided me to manipulate him into thinking I wanted to freshen up and so planned the escape to my colleagues in the conference centre. I relate this story to help you to understand how debilitating a migraine can be.

At the age of 22, I started at the Centre for Conflict Resolution.  I could not have been happier and still count it as my greatest career blessing.  I was ready for any challenge and boy did the job challenge me.  At that time, I became very ill and could not shake a common cold.  The common cold tiredness lingered on and on and eventually I was diagnosed with chronic fatigue.  What?  I am 22 for heavens sake and I love my job!  Well anybody who has ever suffered with chronic fatigue will tell you that we resist, fight,kick and scream only to find out it does not help.  Tonic and vitamins were the order of the day.  The bouts of fatigue continue to return at their will leaving you to wonder what you did to cause it.  More importantly, the accompanying guilt adds emotional toxin to your already failing muscles.  The feeling of being useless then finally finishes you off with a healthy dose of toxic shame. 

At the same time, I started with intense muscle spasm in my neck.  I was quite active at that age.  I walked to work, swam, love aerobics and danced whenever I could.  I found my neck spasm to be aggravated when I swam or did floor exercise at the gym.  I landed up at the physiotherapist who then placed me in neck brace.  Over the years the physiotherapist got replaced by spinologists, acupuncturists and naturopaths.  When my baby was born, my back spasms were competing with my neck spasms.  On the really bad days they seemed to collaborate to wage war against me.

I was always armed with an infrafil heating lamp as I had long given up on creams and gels claiming to provide relief.  The pain would leave me so exhausted and I would eventually just crash.  I remember one incident when I woke up to the smell of burn and then a very hot feeling in my neck.  Yes! I had set myself alight.  In my fave pj’s – lavender with purple butterflies – how is that for “fibro branding” – all puns intended!  (purple butterfly is fibro awareness symbol)

my burned pj's

The strange thing about these spasms is that my mom always told me, “Michelene, that sounds like fibrositis!”  I paid little attention because my mom always says the craziest things.  In all this time, all my many practitioners never picked up that my ailments were related.  The gastrointestinal specialists dealt with my abdominal pains and that was that.  They put me on antispasmodics and said goodbye.  The migraines are a family trait handed down through the generations so I accepted my lot.  The fatigue – mmmmm – I can’t quite recall how we explained that one.  Unfortunately, my story has another twist.

At the age of 6 I was rushed off to hospital after a sudden attack of weird pains in my left knee.  You probably guessed by now that I had an emergency major operation.  I woke up to find myself plastered from my waist to my ankles and a stick in between.  There was a huge cage over my legs to prevent the blankets from touching my body.  This trauma continued for months and eventually saw me enter a convalescent home where I had to try to walk again with no guarantees.  Grace and courage saw me walk out of the hospital and lead a normal childhood without disability.  The diagnosis was osteitisinflammation of the bone. We had no guarantees it would not manifest again.  I think this episode is how we explained my struggles with joint stiffness and as my brother always says, “the way I have to kick start my hip” and other unwilling joints.

In 2012 I started to manifest with Raynaud’s Phenomenon which I learned recently is also a form of arthritis. The extremities of the body (like the hands and feet) react negatively to cold which cuts off the blood supply. This causes pain and infection if it is not properly managed. I refused to have the suggested operation given the bad experiences of others who did have it. Sheepskin slippers, mohair socks and subzero gloves is how I keep my hands and feet from turning blue.

fibro betray

The year 2012 also marked the beginning of a very challenging journey which would take its toll emotionally and physically. I was at the beginning of what was supposed to be a great new life. Endless disappointments brought a number of challenges. My feisty spirit and strong mind helped me to overcome many trials and tribulations. I was very determined to stand tall in the midst of my struggles. Despite my strong mind and spirit, my body crumbled and I could not continue. I hated myself and my body for failing me.

Ironically, it was the very challenges and agony that took its toll on me that also lead me to the way out.

The way out was simply SURRENDER!

I really don’t like long blog posts so we have to fast forward to September 2014. This is where the intense muscle twitches felt more like a baby kicking in the womb. My fatigue resulted in legs that felt like jelly – as though I had run a race I did not prepare for. An additional diagnosis of arthritic tendinitis gave the depression a new lease of life. I reached my lowest low when I could not cut my food and wept every time I was unable to do the simplest tasks. Financial pressures added to the cauldrons of anxiety. The emotional drain of a now failing second marriage had me in the throes of absolute despair and confusion.

Things are very different now but I had to change many things in my life in order to get out of the torment I was in. The coping mechanisms and learning process are blog posts on their own. The journey of self-love and forgiveness requires its own blog! So many miracles are manifesting in this time. My teenage love, first husband, father of my children and friend for 31years – David – has risen to the challenge of taking care of me and our girls when I cannot do so myself. The greatest cure I do believe is unconditional love. My children are learning grace and compassion as they help me and see me being helped. My friends and family – they teach me daily about love!

Finally, let’s acknowledge my mom! Fibrositis is another word for guess what? FIBROMYALGIA She had the diagnosis all these years!

If you have read this post I thank you deeply. By becoming aware you have effected change and become part of the cure.

fibro gone