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.....