Back Fat and Paleo Diet - Day 2

I'm at some stage most of you that have a chronic illness or a zest for wellbeing would have at least heard of the Paleo Diet.
It actually really became cemented in my head on the weekend. I actually felt well enough to go out and you all know what a challenge trying clothes on is....when your out shopping...In particular if your like me and tend to pacrastanate alittle....there may sometimes be several shop stops and trying on.this particular day my energy level was up some and I felt pretty good...for me anyway...I was pretty excited....so off I went with loaded enthusiasm that I was actually going to do  a little retail therapy....

With excitement within. Me....and a baby spring in my step....I headed to the shops as I was in desperate need of some new bras this was definitely a need!
The changing wasn't so fun as my limps felt like concrete weights as I tried on several bras....the effort was slow and tedious...It was then it really struck me as I looked at my body's profile...in an enormous mirror  which made it seem so much more unsightly...Im talking about what I call "back fat"hideous amount of fat bulging from underneath my brain straps...It saddened me to see for the first time my fibro ridden body.....revealed in all its glory.... In that unnecessary... oversized mirror!  Had also accumulated this....over time...Thanks Fibro for for the inability to do enough cardiovascular to drop off the
weight....I think that we eat very well,eating fresh things from garden and being a coeliac with IBS.

Concious of
what goes in my mouth and that I need to move my body each day....these gentle ball exercises are more my style with stretching exercises...walking...10min sessions on the exercise bike.As you can see these arnt the type to drop any access weight.
So....this was the straw that broke the camels back..."back Fat"and I have now started the Paleo Diet.


Day one and Immediently missed my GF rice porridge with cows milk...and the other many cups of tea that get me through the day....even if they are caffeine free....well that was just the beginning.ng the milk was difficult...and so I swapped to some herbal tea...no sugar...no milk...and for brief moments felt proud....but still craved my milk.


I do like to indulge in my dairyproducts and decided that I would purchase Coconut milk as a substitute..so i used it as a substitute in my evening cup of tea....it wasn't distasteful and I actually could get used to it.


I was thinking about how I had progressed through day 1 and just kept thinking of health and wellbeing in particular for my weight and Chronic Fatigue.

It was 2am in the morning and I became horrifically sick....I felt like if I moved I would vomit, at one point passed out and the whole night became a blur of naseaus,dizziness and pain throughout my body...

I tried to do some positive self talk when I fell out of bed to get ready for work...I didn't even make it to the kitchen...with sickness throughout my body...the dizziness overwhelming me...I fell to the closest couch...and stayed there for some time..


Today after slightly recovering I made my way back to bed with assistance from my hubby.In bed now have stayed for the duration of the day....day 2 paleo diet....and the hope of future well being....and a reduction in back fat...
AM hoping the significant change in diet did not bring on an upheval of sorts...
I hope tomorow is a better day...less pain....and fatigue...and overall feeling of unwellness....



F is for....Fibromyalgia.....and of coarse....back "Fat"

Uncertainty....

Each day recently has brought with it the shadow of uncertainty....

The Fatigue has been extremely high  and just  falling out of bed has been an enormous struggle.
Showering has been so difficult I have again resorted back to using my shower chair...the standing and effort taken to wash my body is enormous...and just so exhausting.....my arms have felt like concrete weights and by the time I step out of the shower....it's time to rest....some days I don't  dry myself and just prey the heater does it quickly for me....my arms and legs feel like  large old rusy anchors....slidding deeper down into the depths as I try  sometimes to lightly brush my  body with my towell after showering.

So several weeks have passed since last blogging....Things have been a bigger challenge than the normal...
I have since been refered by my neurologist to a Dr who practices Accupuncture.
So that was an interesting experience,I had to provide him with a written response to heaps of questions in relation to my health...after seven pages later....

Upon my first visit he said after reading my document he thought he should refer me to a vet....to get put down out of my misery....
Interesting....given I only provide factual information with nothing emotive in the content....
Anyway....that was my welcome...I am typically freaked out by injections so I would have to say I was a little anxious.
He only put about ten in....the only uncomfortable one was the inside of my wrist,although I was a little concerned when he was going to place one in my heart surgery scar....as he said...Stay very still...this is sitting at the top of your aorta and can pierce it....so.....lay still I did....but the overall experience with needles did not hurt...but at times felt a little strange at the point but not painfull.
My pain has been incredibly high all week....so I guess only time will tell.
It's been a week since first treatment and I have noticed a slight change with fatigue decreasing slightly.

Things have now become so difficult I have made the decision to reduce my working hours...in  hope this will allow some rest and provide some energy for myself and my family.I feel like I need to have some time when I can do something I would like to do....to improve my quality of life...i have been feeling as though the job that I love so much......  Infact  Has actually taken it all from me...after I return home I don't even have the stamina to cook tea or function properly....its difficult to even engage in conversation.
 I plan to continue with Accupuncture At this stage and am   following up with my pain specialist about the possibility of accessing the "Myers Cocktail"...I  have read it is practiced in other countries but am not sure about here so I have made an appointment with him for July and have sent him some links to information with research /trial data.The side effects look minimum and it seems like there are some positive results....although it is not clear how often you would need to have the treatment that I imagine would be an individual thing.

Anyway....I feel with the everyday uncertainly of how I will manage my sunshine that helps to guide me is my will to continue to research....and hope that there will eventually be something that will be effective for me. My hope at this stage is the Accupuncture....and then my other hope is in my great pain specialist...who is allways open and receptive to open discussion  and ideas ..so I hope that he knows  of and will approve of the "Myers Cocktail" treatment....

This is  my near future sunshine...Accupuncture.....Myers Cocktail.....  And the ever knowledgeable DR. Handsome Khan...  They are my possible  rays of hope.

F is for.....Fibromyalgia...

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)

Long weekend retreat for Fibromyalgia

So today's Friday and in just a couple of hrs I will check in to a private resort....where I can relax for the long weekend...peace....calm...and relaxation...not too much hustle and bustle, no hydro appointments to rush to,or doctors ,other,physio,ot or any other medical stuff to try to fit in ,and around when your worn body is exhausted,and engulphed in pain....

 I'm actually loving that over the long weekend....people can just....come to me...
And I don't have to rush....stress....or hurry....

I won't even have to worry about the sad faces of f
amily members who don't know what to do, that feel like they can't help me....that surrounding me...with deep sadness within them.... I will give them a weekend break from sadness...pain and anxiety....(they will be several hrs away from me)

I will be waited upon, have meals brought to me..(like at home) but with out the sadness......im hoping they will be yum....
It will be time to lie around, read... I can't consider what might need to be done around my house...which is good...and its a change of scenery...

I'm hoping the staff are kind...caring and somewhat compassionate...

And yes....you guessed it...my long weekend resort..isnt exactly a normal resort.. It's a Hospital......I just thought seems its a long weekend and all....and so many luckyeople are going away and have plans....

I would spice mine up a little...
Well I am excited about my trip into my resort... Because...
I saw the neurologist this week for the first time,who was so surprised my fibro was so severe,and decided to book me into hospital today, may I add this resort  also has a resort   price tag attached...

Neuro will be  doing further testing as he believes there is a co existing condition cohabitating with my fibro
within me,and he will also treat my pain with some kind of cocktail of meds...

So...thats about all I know the last couple of days have been a world wind and I will continue to blog this experience...possibly even later tonight after being admitted....

Fingers crossed for a positive journey into the unknown....

F is for foreign....

All over the place...

So its still the same day...only my legs have settled a bit and I'm thinking a little clearer now...
Last night was horrific... I was up and down all night with what I call my bone pain in my top part of my legs and upper part of arms...Fibro friend sitting in my chest and jaw...having a real party of a time...

Was up and down warming the hotti up to wrap up my legs for just a little relief... It helped a tiny bit...well it provided distraction in the night anyway....

When my eyes opened again thizmorning I was glad to see the light flood in...All be it I could still feel some pain...I knew the world would evolve around me now and I could somehow try to join in...

My weariness is showing and I've already be growled at for being surly....will have to try to keep my self under wraps a little better...just want to cry under the covers for a while!! Can't dwell on it any longer....push this shell of a so called body out of bed and think of what to do on this Sunday morning....
My mind is somewhat blank and cross at myself and this body and the world today!!
Will keep my my mouth closed as best as I can this morning....feeling very sensitive...will probably cry...
Good place to start....a hot shower......wash it all away.....it's nice....refreshing but takes so much energy...pain and tolerance.....

Decided to be brave and invite hubby to come and sit out in the garden with me....
As I thought sensitive me....tears.....but all good needed to be heard.....and we both needed to vent...
Living with an invisible disease is very difficult,draining,exhausting and that's for all the family members....
It's good to have the opportunity to make the invisible visible if only by having a discussion....with loved ones...a big thank to to all of my loved ones who take me to appointments..sit by my hospital bed.....time after time......listen to me wing...wine...talk....cry....vent....and are there to offer their valuable ideas and suggestions...and it doesn't matter if I'm not ready to embrace them....im still appreciate of everything that you are offering and saying ...and the time and energies that you are all putting in with me... Thanks everyone..you all know who you are...Love you all so much xxxand can't believe at times your all so tolerable..... So really do appreciate that....you'll never know how much really.....except through my words if you should happen to read them....

F is for Frightened of what is to come....and where this crazy disease is taking me.....
See where the next week takes me.....

February Update....

Well...as I've mentioned previously this is going to be my year of participation....
Wow what a statement that was....but I'm sticking by it....and I have even been participating in work...
And loving it!!!! Well loving the fact I love what I do....I work with amazing people....we all have amazing similar ethics...devoted to supporting children with inclusion...and participation....

Although I had been really struggling behind my four walls...in the inner sanctum...my very rude...obnoxious unwanted fibro visitor decided to pay me a surprise visit.to work......not just any visit...a grand entrance into my chest...where I was overwhelmed...it took me by such surprise I needed a moment to compose myself.
Excused myself as I momentralily.... shed some brief shock tears, took pain relief....wiped away the tears, took a deep breath and attempted to step back into my meeting...

Fortunately it was then morning tea time and I was able to find time to sit quietly and fight my unwanted visitor away...his strength today was tremendous...and mine weak...and tired..I knew that after taking several pain relieving tablets with breaky and a couple more again...he was not going to shift...and I was not going to cope....
It was embarrassing but my boss came out to me and although I looked pretty calm...She knew....and it was then I gave in to my unwanted visitor....and went to the emergency department.
I was given phentynl which is the only one I am not allergic to...so it was a very long day spent in hospital as they too grappled with my unwanted visitor....he even fought them...and was very persistent...
Finally I was home in the evening to rest...but he was still lingering in my chest and they told me to take endone...so I did.... Exhausted...drained...and still feeling some pain I snuggled with my cat and hot pack and finally drifted to a better place....for a few hrs anyway....

Since this day I have seen my pain specialist and I am now going to have more testing...I have continued to have constant pain bone pain in my arms and legs as well...well it feels like bone pain....
AM seeing a neurologist to have a full work up...will be interesting...
But anyway...meanwhile I have increased Topamx dosage 50mg per day so will see how that progresses...so I am now taking 150mg per day.
No side effects so that's one positive.....yeah.....

Will go now legs are really hurting.....

Salt and Pepper.....1

So with this mornings pain and agony....I pushed myself to undress and struggle to get into the shower..
My arms were like lead weights once again...and the pain radiated immediently from within my elbows as I raised my arms to begin the ritual of the hair wash process.

I recently purchased pump packs in my favorite natural shampoo and conditioner...it really helps not to have to hold any thing with my hands...the chore of washing my hair is sometimes nearly unbearable...and I can't even complete the whole process....some mornings...like this morning...I had washed...a little but my hands hurt so much...and then the pins and needles came...and I hadn't even washed out the shampoo....
I reached for my trusty bathroom stool....I just had to sit in the shower and allow the shampoo to run out...and over my body...without the assistance of my hands...I needed to save what strength was left for drying my self....and dressing to prepare for work.....My new day had begun....

After this...and some girly chats today...I have decided...to make one of the biggest decisions I have made.I must be so vain!! Because it's really effecting me...and is a huge deal to me...so...firstly you need to know I am 42 and have fairly dark...nearly black hair...probably shoulder length and very thick.Now its so dark that it freaks me out when I have horrific grey hair come shooting through as it does....so like many women of today...I dye it....simply because I'm not ready to be grey just yet.

But there are significant changes in the wind in this house hold....today is the day I have decided I am not going to dye my hair any more! And tomorrow I am going to the hairdresser to get it cut  really short...in hope the transition from this to that....or pepper to salt....  In hope it Happens a little quicker....and a little less painlessly...

I hope to embrace the new me...and know that I will no longer be pouring such. Chemicals Into my body each month....maybe it will help my fibro pain?????

I'm really scared....of how it will look as it transitions..... But I am being really positive about the eventual outcome....which at the max will be 4-6months.... It will be so much easier for my hands...less work to style.etc...and no more chemicals....so my hands are going go be forever eternally greatful!!
Oh and the other big thing about my decision is I haven't told hubby....he has nagged me for years to stop dying my hair and go....gracefully grey....as he puts it...ha ha...(lets see how graceful he really thinks it is)

I know I will not sleep tonight as I prepare for the big chop....but I will remind myself....it's for the greater good....my hands...and arms....and better wellbeing.....


Salt and pepper here I come..........will keep you posted....

F is for Fear.....

A spoon or two....

I've been really fortunate and actually had a little sleep during the night...
I awoke to immediently know it's either going to be again really hot....or the weather has changed....

All I did was open my eyes...upon lying still I could feel the intense pain and firy inferno in both of my feet...both arms feel like lead weights and each elbow area is very painful...shoulderblades pain is already peaking around a hospital scale of a 7....and all I've done is just moved my eye muscles for the day....and its early on a Sunday morning...it's lovely and quiet in my home...im relaxed cause I've actually slept a little....and this is the beginning of my new day...

My unwanted visitor sensed a change in weather very early thismorning and has arrived to stay for a Sunday visit I think....

As I look out the Window its grey and it's cooler looking and it makes me feel better knowing its going to cool down some what this coming week,after the past weeks events...

Once the barametic pressure settles so will my unwanted visitor....

Anyway...I was considering what my options were to begin the day with...I thought I could massage my feet with some elmore oil..but then that would use up a spoon or two of mine...If any of you know the spoon theory....(I will come back to that)and will leave me with less usage in my hands....which when you are home alone...is not a good option....holding....pouring...tying...cutting..would not be an option if I was to massage my own feet....so....I might soak them in Epsom salts, then wrap them in a hot pack and see if that reduces the pain and awful sensations enough to walk around and be able to enjoy my day....

I will have to hope the break  meds help with the rest of the pain...and im relaxing with the cat and listening to some Ed Sheeran good relaxation...or distraction method....

For those that are reading and have Fibro...and want to explain what it's like to family and friends...or other loving people taking the time to understand by reading this blog...this spoon theory written by this incredible women who actually doesn't have Fibro but Lupus...has come up with this theory...when I read it I cried...it was so exactly what it is truly like...
Each and every day!!
Please read its great...and sad...but it makes sense....

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

So....not long....and I may have previously mentioned that I will be finally undergoing my muscle and nerve testing.... In hope for some answers... Things have been progressively been deteriorating...and in silence....Shhhh.... so I may not like the outcome but I am now at a place where I am as prepared as I can be for what will be.... I need now to be able to have the medical professional. Tackle whatever is actually happening alongside my fibro...my pain specialist has mentioned several times it is very difficult to treat whilst we don't know what else is going on...

I'm gearing up for my testing on the 24th...so of coarse will keep you all posted...and hope for some type of progress....

I have one thing on my side.... Love and support....it will not only get me to the appointment but pull me....or possibly drag me back out the other end....dependant on results....good or bad I suppose....people are amazing....and I think they are gifted with love, strength and compassion....and I can say amongst the chaos of this condition...
The sadness it brings...the unpredictability....and relentlessness....

Love is there....and amongst everything sad and bitter in my life that this condition has brought with it...
I have love around me.....
A little sprinkled here....and a little sprinkled there....just like magic fairy dust....it's what keeps me going....even if the fairy dust is via phone link....sms....

Hugs and kisses to my special little group of unique people that put up with my daily shit...your all amazing...and I love you....even ...I know some of you don't read this....but that's okay too....it's pretty sad...particular when you live it.


F is for....Future .....

Ghastly Heat 2....

I was knocked over by the intensity of my unwanted visitor "Fibromyalgia" last night.
The sudden arrival...intensity and unexpectancy of the volume of how he overtook my whole being...without question....hesitation...or...interruption...

Intensity high on the hospital scale it was a 9 and I felt flattened by the ragging pain within my chest,jaw and the entirety of my body.

The overwhelming feeling of coarse came from the chest ,rib and jaw pain...its allways the most severe...and overcomes not only my physical being but my emotional too.

So poor hubby was so concerned and was wanting to ring an ambulance but I was being really strong....well...I was trying to...
After last year when I had up to three trips to hospital a month... And last November I spent ten days in there...All for my Fibromyalgia... So my promise to myself was to avoid it at all costs since weaning off the oxcycontin they had previously given me...and the hellish place it had previously sent me too...

So...trying to be strong...brave...and again hold it together again....night has fallen ..and so has my fibro friend...into my chest and jaw again tonight...for consecutive nights now....
My strength has wained...and im feeling like its getting harder to fight the fight....Im lying in the cool out of the heat...and I've been relaxing...I've used my relaxation CD to fight my unwanted visitor but today he's stronger...so trying a bit of pet therapy...playing my my eight week old kitten "Bella"as a distraction...

Medication has not made any change in level of pain tonight...my new medication Topamax has not yet made any change in the pain levels either...I am seeing pain specialist in March so am going to increase dosage in hope of any change....

This heat is really challenging my strength...

I have pushed myself...made an effort with my presentation inhope that it would somehow make me feel a little better...brighter...and keep reminding myself...I am NOT standing on the sidelines this year... And that I am going to participate in life this year....

But....this ghastly heat is making it very challenging...

This illness brings its challenges...and along the way you certainly find out who true friends are.The ones that truly care....the ones that actually visit...and understand....that don't have high expectations of you....ones that remember that they are your friends in both good and bad times...

The people that like you when your having better days and be be more sociable..

The people that turn a blind eye when they can see your struggling to pour (due to weight)the milk....into the coffees your making for others...

Or your walking with others and you can't quite keep

Anyway....my Fibro fingers are very painful and can no longer write...so....

F is for....Frustration.....

Ghastly Heat....

Goshhhh....it's been so so hot....and my very unwanted visitor has actually moved in!!

He seems to have a permanent position somewhere within my left ribs...ouch is about all I can say...it feels as though my husband has accidently reversed his milk tanker over me...or something horrific like that....someday the pain is just undescribable....and I actually just can't even really take a deep breath...it sounds creepy if your standing near me....and I'm deep breathing....Ha Ha...
Allways concious of this...it's really weird but the pain truely grabs your breath as you breath....it's so severe....

Anyway....it's the heats.fault....and I hate it....since the heat has arrived so has my visitor...and he won't leave...at all!!! I haven't had an hrs break for days now....usually I can have afew hrs break!!!but at the moment he is just being so persistent...and its as if he's throwing a party....brought some friends....and this is what they do when they visit...they...make me have severe pins and needles in my hands until they become numb for long periods of time...it can be for hrs at a time....and by the evening when my poor body is so fatigue by them all they really pump up the music...and then I get an inner tremor...Through my bum check...down my leg...it just feels like it's going through me....yes ...I could liken to....just like that ridiculous  vibration of music you sometimes sit beside thumping and buzzing out of a pimpted up black shinny car...at a set of traffic lights...that goes screeching past you...you know the one....or it is sometimes red...cause red goes fast too....

No rest for the wicked they say....not even when your physically exhausted...and emotionally drained...my body still won't rest....it just tremors away quietly.....inside me....like my body is a tomb....and its trying to escape....

But through it all I'm trying to stay focused....im not sitting on the sidelines this year....thats my promise to myself..

I'm going to participate in life this year....

Resonating pain....

Todays weather forecast was was predicting a high of 42 degree scorcher....and all I could imagine before the day had even began was how this would impact upon my fibro ridden body.

I was at at work and little did people know...
My spine actually felt as though someone had the largest vegatable peeler known to man kind....and very unlikely peeled a thick layer of skin off my spin....it felt so raw from the pain that I felt from the top to the bottom....just the simple light touch of the brush of my office chair against it felt like an intense inferno....

About that time a colleague actually said..you seem to be doing so much better these days....
Hmmmmmm...I took one of those big swallows...when you know your about to loose it.....and I said...actually the pain is just the same as it has allways been...
She said....what strategies are you using.....implying I seem so much better....(which was nice)it was then my eyes filled with tears and I struggled with my words and said....I'm just dealing with it a little differdntly emotionally these  days.....im more excepting of the condition....it's not going to change...so I do have to get used to living like this....

With that I said.....But I can't talk about it or this happens.....and began to cry a little....but was brave for it was just a moment in time.....

It's then I noticed...it's the unspokenwords....they are kind of ok....they sit there...in your mind....and in your head....yet when .they are spoken....and are loud....and carry a sound....and resonate around you and become loud and then real....they hurt!! And they bring the tears....and the pain.....even if only for a moment.....

So bloody frustrating that pain lives within me every single day....and of recent times it's friend has been the severe pins and needles....so annoying....

Anyway my resonating pain was not only within my mind....but truly within my body today....the heat effected me so much.Between high level of pain and fatigue today was frustrating....

Positive outcome for today....I did manage to work through some of my report writing today....and settle my new staff member into her new role as well....
And tomorrow is a new day.....and the forecast is not supposed to be in the 40s horray!!!....

F is for .......  Fibromyalgia....