4 Days later...

It's now been four days since my most recent visit to the emergency department for pain management.
It has been a long four days...my unwanted visitor has been calling by regular and without warning.

After another terrible pain ridden night,I decided today was going to be my pj day,and I would just lie in bed.
I don't think that must be my make up or something...or its that I see a bed as a sick place...a reminder of all the times I have spent in a hospital bed,or in my own...when times are not as they allways should be.I just don't even wish to petray the victim....so to speak...I'd rather rest a day,mend and then just soldiers on....no one would be the wiser.so the couch became my choice of resting place .

There are times when my invisible unwanted visitor becomes the invisible....mostly for my family,or the odd  person who can pick it in my face....I must carry the face of anguish with me at times...
This time arounds huge flare up has dragged me up and down....one minute I think my visitor is leaving....the next he returns...and  may I add allways without invitation!

I'm exhausted for trying to fight him off...im exhausted for chasing my own emotions around....and for thinking....and thinking....about what might be in the future.
For thinking....family....friends....work....and for thinking of the next thing I'm going to try to fight this unwanted visitor from my body....and where it seems to have become his home.

I'm yearning to get back into things this week....and its onl
y been four days of overwhelming pain...I just need to rest....revigorate...recharge....restore....
Only I'm frightened of what may and possibly will be....as soon as I begin again....im frightened of attracting my unwanted visitor back.Im frightened of my special strategies not working....frightened of going back to hospital and being judged...frightened of putting more stress upon my family....


F is for four days..later.....
F is for Frightened....
F is for Fear.....

Will see what 5 days later can bring.....

The persistence of my unwanted visitor....

So this is week 9 day 1.....so to speak....the following day after my last blog....

I had decided regardless how I was feeling I would take my teenage son out to get a couple of things...and also for him to have a break from his consistant vce study.

I could feel that my unwanted visitor was on board already,but with my  small ray of happiness...or not so small and now in year twelve and built from weight work...was by my side.

The sun was shinning and as we walked my purposeful and mindful thoughts were for myself was to enjoy the small bit of warmth from the morning sun....the rustle from the autumn leaves beneath my feet....and the mother and son banter as we walked....very slowly.

We rested several times and enjoyed a break at a cafe were i sipped on a Chai,and desperatly downed some pain relief.
My unwanted visitor was challenging my will....to continue with my morning outing.
He was sitting within my chest cavity,and at the same time moving around me....landing and touching all my joints.

Although I managed with all my might to stay strong,be positive and not buckle...not outwardly anyway....I knew it was time to wave my white flag....

And go home,retreat to my ouch...

 I rested and tried to keep  my mind from wandering back to my unwanted visitor....I decided to listen to my relaxation cds.... This supported me for a brief time only as my vicious unwanted visitor was clearly going to make his own stand today.Around 5pm I took some panadol oesteo...which only made my fibro visitor laugh at me....and grow with his intensity...

By 6..30....he had drained my strength....will..... and tears from within me....
I hesitantly took my last resort...endone...this being what I call my go to....Before hospital...

As I tried again to refocus my attentions away from him....and let the endone work....I couldn't.
He grew heavy and larger within my central chest,and also climbed into my jaw bone.
Now given I have a Cardiac condition....this was also adding to my anxieties.
I made the decision to call the trusty ambos....

With that I was soon wisked to hospital and given some phentynal to reduce this vicious visitor deep within me....

I certainly waved my white flag to my fibro this night,not without a fight...or challenge though.

This although was not my only challenge....
Little did I know in my vulnerable state that  I  would be questioned about the seriousness of this condition...and the level of pain I was enduring.
It is rare for this to occur,but on this night....I had the following words said to me...".none of your signs are stating you are in pain"and "you are the most relaxed person I've ever seen with a pain score of 6"
Now given the fact at that stage I have had several doses of phentynal....
Yes I was kind of relaxed.... And as for signs..????

Clearly it was evident that this nurse was not knowledgeable at all about fibromyalgia,and even if this is the case....it was not his place to show me how he felt,or question me..Nursing is a caring profession....and once those words resonated through my head....I just cried...i didn't anticipate it...
And wanted to leave....it was interesting as he said these words he pulled the curtain around for privacy too..... It's hard enough living with an invisible condition but to question me....in such a way....
I bit back with a comment something like this"maybe they don't live with fibromyalgia,and cope with pain every single day! "

It was funny then when I wanted to leave he actually was really nervous about it....probably thinking if I was actually in pain and something could go wrong...it could  on his watch.....wouldn't look so good.

I'm considering writing a complaint....when I'm feeling less emotive about it....and thoughts are clearer,I'm sure the hospital would like to be informed about the ill informed,uncaring nurse they have employed.

F is for.....fairness which we all deserve......
E is for.....equality.....which we also all deserve...

9 weeks after treatment

 Today I  finished my day at work,walking to my car I could feel my unwanted visitor surge through my entire body.
He had entered at the base of my neck,working his way down my spine,and infused himself into all the tiny bones in my feet....All at once.
The autumn sun was beggining to hide for the day,and the air felt crisper upon my face,I had earlier put on my coat on, but the weight of my coat wore me down,and I felt like each step toward my car were concrete laden ones....
Upon reaching my car I slowly removed what felt like a weight coat.
My home was close by...and so once  again .....I dragged my fatigued,overtaken body into my home.

It's early evening, I eaten a small tea,but done nothing else....,rested,demanded massage...and am feeling like I don't have enough strength to engage with others....im grumpy.....

Luckily my family are loving and warm,it's evident my pain is high and Exhaustion has set in.

It's now early evening and I've taken myself to bed,in hope  the warm will reduce the pain,have listened to a Relaxation CD....too no avail....

So this is me 9 weeks later....after treatment...which I still feel has moved..or shifted my unwanted visitor...he is still not as persistent early in the morning....he usually now waits to implode in me at about 10am....and he sneaks in early slowly and now works up to it....a kind of new tactic since treatment.
So I'm seeing that as positive.... Even though right now he's even making his way into my fingers....im sure he knows I'm writing about him.
He's eased into my hands...as though they need an oil...Until he sends a surge of himself right through from big knuckles to the tips of my fingers.If he were electricity,he would have caused a spike and caused our computers to shut down, with permanent damage.So.....if I try to be positive....I can just think....that it will settle later....and my fingers will continue to work....although.....there are many costly workmen..and women......looking at and working with this inefficient piece of human machinery....
Aaahhh.......and its still not working well....

F is for..... Fibro....Friday...

May - 6 weeks after treatment....

Well I don't even know where to begin...so much has occurred within the past 6 weeks....

Firstly to recap...I was recently admitted for a different treatment for my Fibro pain management.
I was really lucky to be referred from my gorgeous pain specialist...to a very caring and dedicated and very experienced Neurologist.
Upon visiting him for the very first time he even appeared horrified of the pain that I endure each day...I was just greatful for his empathy and prompt action.I was then hospitalized within a couple of days.

If you read the previous blogs you will see I had several combinations of IV drips and oral meds.
Upon being discharged this lovely man suggested he had felt the treatment didnot work.....I pretty much begged him to trial the oral meds for a bit....just to see...and to give myself that possible ray of hope of some recovery.

I returned home with script in hand....Hubby went to the pharmacy and soon returned with boxes of meds half filling a shopping bag....it was at this stage I began feeling disheartened and wondered why and what I was doing....I hate all that seems to come my way with any medications...and their side effects....and angst of taking such potent meds...
I began the task of the new medication regime which consisted of the following....Long list....
So...half hr before break...nexium....then after breakfast...400mg of epilem,2panadol oesteo,1000mg naproxen, At lunch time another 2 panadol oesteo...evening before bed...400mg epilem again,25phenergan,10endep...and again 2panadol oesteo.
This is with my daily heart medication as well....this is what happened next....
The next four days I lay listless....too afraid to move unless otherwise was to the toilet...Things were not stable around me....although they were...and its was a feeling I felt that was overwhelming me...with nausea...and an overall feeling that overtook my body,mind and spirit.
There were many tears...as I fought to try to cope with the sensations and the Fibro pain resting also upon my body.My poor hubby wanting to be the brave rescuer....and take me to hospital,due to his own concerns.
It overwhelmed me to the point where day 3 i even said to my hubby....im not strong enough to continue with this new treatment.I felt as though I was weakened to a breaking point and NEARLY stopped the meds.When I awoke day 4 I was a different person....the cloud of billious feelings that had so heavyly consumed me had been lifted.

So here I am approx....6 weeks later...and the following things have changed for me...
Since leaving hospital I have not had pins and needles,nor numbness in my hands...at all....yah!!!!
When I wake first thing...my pain scale without even getting out of bed is now at most amazing...only somewhere around 5 to begin the day....im so excited!!!
It still increase over the. Coarse of the day but hay....I don't wake and begin every single day with excruciating pain throughout my whole body....just bits instead....again....this is a yay....for me....

So I feel that there has been some shift and one of my significant things I was able to do with these changes now on board was....
I made a birthday cake for a friend.....

Pushed by both my new results...strong will...and friendzhip for another erson....I pushed myself.....although I did take breaks...pacing myself every opportunity.... during the process to rest, but was so shocked by the end result.This was the first time in years I was able to stand,use my arms...and hands...to complete such a task.I will admit by the end the pain...which I know as my unwanted visitor had soon arrived and slid in at the top of my body....only to work his way down to the end of my toes....I could barely even stand....and soon fell into a warm bed ....to end the day....

F is for faith....in trialing new things....and taking a huge leap into the unknown....

Long weekend retreat for Fibromyalgia 4

My unwanted visitor returned to visit me again last night...he settled  into my big bones in both of my thighs...and into both knees...
This came about not long after my late evening IV dosages,and brought with it some form of agitation....I tried to settle to sleep but vivid dreams flashed before me,in very clear images...so very close up...the clarity in their voices was crisp as if you were having a face to face discussion yourself...only not.The volume was turned up to extra loud and overwhelming and resonating all around my head....but at the same time the minute a nurse quietly stepped into my room I could open my eyes and be wide awake....I felt I was in a state of sleep wakefulness....and as soon as my eyes closed the imagery began once very again and there I was as a silent observer....i was fortunate it was not horrific,nor scary...just loud and very usual....

The imagery continued and so did the pain.... I got up and went for a walk around the ward...trying to exhaust it all out of my system...or redirect my thoughts...I was timely in my approach,my room is the only room upstairs and they were about to turn on all the security systems for the night...
So once I stepped from my landing down to the main corridor it would have set
 off an alarm....that could have really redirected my thoughts....and im sure many others too....
Finally after a slow wander back and forth,the hospital is very small so the corridors probably just a good size and length, not too far to go but somewhere to go....and no chance of fibro fog robbing me of my way back to my room....

So my tactic of redirection, stretching and exercise wasn't too successful with my pain,I was feeling overwhelmed by this stage,thinking negatively...and crying....wondering why my treatments not working,where  now to go  from here..... I felt a little hopeless as if I was caught in some big void...and it wasn't going to improve...and how we could now move forward....and where to go....this was my forward..and that this
is was going to be my improvement......and this was my plan....so...tears flowed...and flowed.....
Exhaustion finally overcome
 my body and soul...and I did drift to sleep with assistance from some endone.

AM missing my family greatly so this is think is impacting...as I am hospitalized. A couple of hours away,and it seems everyone in my family are currently fostered on   working very hard....but am hoping for a special late night delivery  of family tonight...so can't wait! and this was an unexpected stay in hospital...no forward planning  time  for leave etc for hubby...

So in amongst all the sadness and frustrations...there are the other things...like to us foodies...If you should classify your self as one...now I must admit I say I am...but from the sidelines...I love it,I eat it,I critic it...but I am no good at cooking it....boo boo....only the odd thing...my husband  is our incredible household  chef...with a European background brings his heritage and childhood memories onto our plates....Here with an abundance of knowledge and a freestyle approach to natural home grown fresh healthy items usually straight from the garden,as much as possible....

So thizmorning when this breakfast was served all I sensed I was missing was my morning hugs,smiles and beautiful dark eyes that woo me into the beginning of the day....and can be one of the rare things that make me smile from inside to out....so missing my family....

Buttered mushrooms,vine roasted tomatoes and pesto

F is for .....Family...

Weekend retreat for Fibromyalgia 3

Firstly I wish to reflect back to the night from helI believe was a side effect from one of my IV drugs, I think possibly the Metheylprednisolne,as some of the said side effects are restlessness ,anxiety and wakefulness...If such a word exists...

The multiple IV s were finished quiet late in the evening and my body was raging its own war against our usual unwanted visitor....as usual...fancy even locating me upon on retreat...most unexceptable....

Myunwanted visitor had started at my  shoulder blades ,tripped on down to my elbows,hips,knees,and feet...while all the time leaving his dark and heavy shadow imprint behind on the previous area...

This was just the nights beginning...after redirecting my thoughts to a really good movie...but fibro fog has removed its name,sorry!!.... I finally managed to slowly drift off to another place...
But only for a couple of hours when an army of agitated bull ants came marching into my legs,causing me to feel overwhelmed and agitated...I couldn't lye still,I felt like I could vomit it was so overwhelming... I got up and attempted to walk it out...shake it out...caffeine it out....exterminate those ants out with heat,the lovely nurses who actually went out of their way to heat up my hotti did so gainst some rules...
Shhhh....just to try to help....those bullants were ruthless...marching with their army...it wasn't until much later...they must have reached their nest....and finally! I drifted into a much needed rest....then...
My lovely nurses had to wake me about an hour later to start the next IV infusion at 6am.

And so the next cycle began....
As mentioned I have started on the Endep,which is a common drug for fibromyalgia patients,so I thought that I would also add some information about the process involved in the brain and why it is used,people get scared because it is an antidepressant,or the stigma attached, so I thought it valuable to add valuable insight into to how, why Endep is used for Fibromyalgia.


Antidepressants  are used to control the chemicals in the brain (serotonin and norepinephrine) that.  *That Effect the way pain signals are interpreted by the brain. There are many types of anti-depressant, and many medications of each type. Commonly prescribed anti-depressants include SSRIs (selective serotonin reuptake inhibitors) like Zoloft and Paxil, SNRIs(serotonin-norepinephrine reuptake inhibitors) like Effexor, Cymbalta, and the new one, Milnacipran. Fibromyalgia patients often suffer from depression as well, so it is quite common for more than one antidepressant to be prescribed to manage different aspects of the illness.Dosages used for pain reduction will be significantly lower than used in management of depression.

SSRI Antidepressants include: Prozac, Zoloft, Aropax,

SNRI Antidepressants include: Cymbalta, Effexor, Pristiq, Milnacipran…

TCAs (Tricyclic Antidepressants):  Endep (Amitriptyline), Clomipramine…

MAOI (monoamine oxidase inhibitor):  moclobemide, Ginkgo Biloba, Amira…

So this has been one elements of my stay here.... At my so called  so called long weekend fibromyalgia  resort... Positive thoughts....thats my spin this, long weekend...and finding all positives out of this experience as well as the truth and ugliness that comes with fibromyalgia and it's treatments...

So as I'm a little of a foodie,and do love to tune in to most reality tv food shows...sharing my common interests...and our  good old human nature ....I don't like. Her comment......or I hope they win..... comment....the kind of shows that set us up today us in..create ratings....does this sound familiar...

That aside...I love a nice Chai latte out with a nice gluten free piece of cake,visiting different cafes around our lovely town,and sharing with family and friends when I can....this is one of my favorite things gs to do when am able to.....So loving food as I do....I couldn't resist but to take these master piece dinners I have been receiving...
Now we do have to remember I know ow I'm trying to redirect my thought,pretending I'm in a resort for the weekend.... But in all honesty...this is not normal hospital food...
Compliments to the chef (yes there is even a chef here)...is all I can say....a job we,let done again...If any negative for me would have to say the meal size was too large! And for me that is very unusual when it comes to pasta....

Well will see what tomorow brings...my hands are becoming very sore and fatigue, so time to rest,new IV has been set back up...

F is for....Food.....

Long weekend retreat for Fibromyalgia-2

Well for those like myself that love a bit of DowntownAbbey... This gorgeous building has some of its yester year and history...

Not the same heritage as it is but....never the less this gorgeous grand two storey mansion,occupying a corner in East melbourne was designed in the archaded  italianate  style in 1878 an then in the year 1900 converted to a hospital.

So next to the lovely dedicated staff here...they all appear very lovely and compassionate, so I'm really happy with that...
The process was initially quick to begin with...bloods taken immediently,iv bung in place ready in place to go,ecg was done,blood sugar levels taken,urine specimen taken....it seems they were very particular...so I was very happy...
Then....left to rest.......and rest...and rest...was wondering when was it going to really going to get happening....Finally after what I have to say was an amazing ....see I truly am in a resort!.....
I even have a photo for proof....

Pork fillet wrapped in pear and prosciutto,broccoli florettes,Lemon and herb olive oil....yum yum....and gluten free....

So back to the other real things.... The iv drugs were set up...
Metheylprednisolne.... this was going through over the next hour, then I would be able to have with stop...walk around...then reconnected to another dose before the night was through.
Within moments my arm had a sharp stinging, burning and redness travel up My arm,with precision and efficiency from the team around me...
It was soon rectified....the dosages and drip slowed..and the slow process continued....
Next....I was given some phenergan...and I began on some endep...
Nearly all the girls in my fibro group take endep... But they still appear to really struggle..

Anyway...it's a new medication for me...so so in combination with the iv therapy....
Will see how things progress....
Day 1 of my fibro retreat...
F is for.....Phenergan???????!???????(I will question this tomorow)