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....