Sunday- day before admission again.....

Just thinking of things I love......

I now felt I had a better insight to my inner self.....and the symptoms and treatment of Fibro.
Yesterday I couldn't help but venture outdoors,simply for fresh air and a glimpse of sunshine.
The beautiful gardens are located very closely so I rug up and begin my slow walk  out into the beautiful crispness that's pushing against my bare face.

Normally I would hesitate to go out into the icy wind, today I felt more empowered, and had the inner strength to do so.
Sitting in the gardens I enjoy watching groups of healthy vibrant people participating in Tai Chai activities......I've wanted to do this for so long....it is now a make a decision that when I return to my life after this treatment that I am going to do this.....I am going to also participate in life.....and not just watch it go by with the sadness that has been within me.

I'm feeling positive.......no great pain although it's cooler weather......better things to come......

I will try to surround myself with some of the things I love to support me through the process......

Say warm and I'm thinking positive thoughts for all those in  need.......

Day 5 _time out......Thumbs up for Ketamine treatment

So today is day 5 and I get to enjoy some fresh air family and friends for the weekend priof to my re-admittance for another 5 days of Physical rehabilitation and  Biofeedback. Last night was unsettled with total disorientation upon me.Firstly I was unsure while the walls had closed in closer to me,wy I felt my cat walking on my bed but could not find her for her evening snuggle and pat. Really I was slightly overcome  with some  moments of not knowing where I was or why I was doing.......All very distant .


AM  Able to enjoy  a weekend with loving family before spending another week indoors.The gardens here are so  lovely and serene.......It is here I will take stock of the week that has been.....

Through my journey this past week I was educated around a couple of specific topics that I felt will be invaluable in moving forward a positive way.
Thanks Aidan for this........oh and I think you look a bit like James Blunt......but that could be the Ketamine·?


*Pheripheral Sensation
More receptors are produced in peripheral nerves
Therefore,Less stimulation is needed to activate nerve receptors
Sometimes nerves are so sensitive that even touch fuses pin
The result is more dangerous messages sent to the spinal cord

*Centro Sensitisation
Nerves in the spinal cord produce more receptors and they remain open longer to al
low more messages to be transmitted.
Therefore....danger messages are amplified in the spinal chord.

I would suggest anyone with Fibromyalgia symptoms to check out the following book :
Butler,D,& Moseley,  G .L.  Explain Pain
NoI Group Publishing,Adelaide, 2003.

Day 4 Chronicle PM

Have had some wonderful company today as my eldest son came along to physiotherapy class with me.
If ever I was feeling alone and hard done by this is the room to step in to, it provides a very crisp description of how much immense pain and daily struggles that are   endured along the way to  better health and wellbeing.I m sorry I Missed u able to write clearer as my eyes will not allow.......
My Ketamine is The a higher rate..........
F is for fighting for freedom......this is what I observed today......

Day 4 AM Chronicle

As I awoke thismorning after a very peaceful sleep....
For the first time in a very long time I had NO pain resting within multiple body parts. .It didn't actually resemble my usual flu like symptoms that are present most mornings when I awake.

This is amazing and I feel as though I could Frolic down The hospital corridor....I feel as though perhaps it's a Ketamine induced Fantasy y or perhaps even a Falacy.......will see as the day proceeds......Hopefully is the beginning of a much better road to travel......

Slept so well and no Fionas In sight.....

Emergency rush from my bed to assist the lovely elderly Lithawanian woman that shares her amazing worn torn childhood stories with me.She need that all urgent  morning rush to the toilet,but has recently undergone a hip replacement.It's about now it became clear just how and why the nurses fight for workplace change with nurse patient ratio.
Heavy old big Drip stand  is one hand.,wobbly on my feet, I provide as much back up as possible for her, at least if she fell she would be able to rest of me and not the floor.I had madly rang the buzzer but she was so anxious about having an accident she grabbed her frame and away we went.....into the toilet......

I hope the warmth I can show now  will somehow come back to me I my older days....thats  all anyone at these vulnerable moments can really wish for is respect.....

Gorgeous Dr will be in soon and am anticipating the Ketamine to be increased today.....AM coping really well with it! and to top off my morning my even more gorgeous eldest son is visiting this morning to attend pysio with me.......

F is for Faith......that this is truly working....

Day 3 PM Chronicle

My Ketamine Infusion has been increased this afternoon.......at this point I'm not feeling any other  increased Sensations or  feelings of blurriness,disorientation or anything else...So far positive.

I'm feeling positive about this whole process,  the rebooting of my brain and the education side of things that I am receiving ING along the way.

My Pysio is great|!!with a big. G.    He's understanding and explains things in such a way someone infused up to their ears on Ketamine can even understand.

I'm beginning to feel as though my journey ahead will be fun, learning new skills and having the opportunity  to be able go and once again  have fun.......It's been so long since traveling that road.....

Have tried several things in my pysio today and am very hopeful to transfer the information into my new beginning.

You will note there are still the odd errors....
Written herd....I apologize......this reading and writing is my current challenge but it will be all worth it! Actually don't think it's too bad with a now doubled dose of Ketamine.....think of it as cryptic or en rypted with some special K code......

So I finally got the lovely Fiona out of my drug endused state .....but it did take some time......I'm now left wondering who or what sill be next......



Oh nearly foot to share tonight's amazing yum meal.....Who would believe you would get a yummy ser ING of steak in hospital........and I'm not even a stake kind of a girl.

Was fortunate my beautiful girls traveled down to visit today.....Was so nice......refreshed my spirits doubly after a visit from hubby as well.Lots of hugs and tried to be brave and shed no tears......Was good with the girls but couldn't quite cut it with hubby.....poor thing.....im sure he thinks I've turned into
some someone else emotional wife,,,,,and possibly wondering who's  now in my slippers.....





F is for........Family,  Friends.........
Fresh and  Flexible which is what I hope will be me in the not too distant future.......

Day 3 AM Chronicle

7AM and the hustle and bustle  has began withn the ward .

I've had the strangest sleep.....Fibro fighting against my new crusader that's currently saturating my system and trying its hardest to block those nasty paid receptors. My rib pain again paid a brief visit and woke me from sleep several times.....THEN......the strangest things......each nurse that came to visit me I thought was one of the girls I work with...Fiona.....Possibly I thought she was visiting with her greaT sense of wit and humour.....I'm not sure but they were definitely all Fionas last ......night......cccrrrazzzyyyyy........

Ketamine effected I start this new day.......

For is for Fiona.....and her bright cheery presence........

Day 2....... pm Chronicle

Have slept peacefully on and off throughout the day.....it's those long blinks that tun into an actually sleep and so  very quickly.

The Picc line / Ketamine. Drip is not uncomfortable and I have managed how to remove from power systems if I feel the need for a walk .It's slow and still somewhat  wonky but best to keep the moving going whilst I feel well enough to do so.

Have spent time with my pysio who has a lovely approach....it would be easy to mistake him for the psychologist.Had some time In morning and afternoon,used a contraption that was a bit like a bike but for your hands,Then onto the walking machine.With Ketamine infusing into my body the pain has become a much lower level.

My darling husband visited, after yesterday I think he was surprised I was not admitted to the pys ward.....It was so overwhelming when he had to leave and they hadn't even began the Ketamine Infusion.....

I actually think he has to physically un  clasp my hands that were like a set of tight bands keeping him right near to me.....where I needed him. Book Hoo not a nice sight and I'm sure so more of a challenge for him..........strength  ,  guidance and love to him through this journey!

Pain has been fairly consistently about a 5 so I'm feeling quite blessed to be in this position....with experts in their fields....and consistent key people to deliver the treatment, I feel privelaged for the opportunity.

Apologies for any random errors.....this Ketamine is making its self know when it comes to putting this together.

One last thing to share proprietary to again dozing back off to sleep......A pic of my hospital team tlnighg

Veal Saltimbocca,seasonal vegies and scollop potatoes
F is for Food.......that you never expected to get in hospital.......

New Day 2.....AM Chronical

For is for...........Family,Friends, and Fibromyalgians...... goodmorning to you all..........

I'm feeling a bit brighter this morning, I'm definitely aware there is a stranger inhabiting my body,but he seems to sit quietly in the background and is not aggressive at all like his Fibro enemy. He allowed me to sleep so peacefully, and I feel quite settled....another new day is just beginning.

I saw a reflection of hope in the mirror, I'm rested and ready to begin this new journey with all my might.

Day 1 Ketamine Treatment

Here I am, the initial fears have now passed and I'm somewhat floaty and disjointed to a point,I apologize now for nany errors that will possibly occur.....these little letters are all challenge to see straight.So was quickly taken to theater to have the Picc line procedure completed......no female grim reaper sight.....phew.....
 Was still emotive anyway and did ask for sedation, which was freely provided to assist me with relaxing.
Clearly that was not so successful with fearful tears streaming down my. Becks.....hos exhausting.....I didn't see or feel too much discomfort but realized there was some clean up due to my thinned lood.

Actually no longer am able to truly focur or see these winning letters.........So this is a reminder that is at  he end of my bed....clearly for the current state of mind I am currently in!  the end of my bed....they mig

This letter A iz for me, as it appears I have no naMe....at least it could have been a F.........For is for floorless.......something that this Ketamine state has not assisted me with at all.

Goodluck go all who can definitely ifar my drugged body and soul......hope tomorrow is a less emotive day......As I'm now very much struggling with these words...letters and what it all said....

Hopefully tommorow will bring a better state of mind doing.......

For is for Feelings.....Find........

And for Frost,who has I now won't have to endure her in Melbourne.

Apologies in advance for this but I guess it explain a just how things are going....night everyone.....

Admission Day!

It's now 5.45AM and I have been awake for hours.......

I'm being admitted into hospital later this morning to begin my Ketamine treatment for my Fibromyalgia.

I have a mass of butterflies in my stomach ...who ever new they could come in such masses...or is that....swarms.....or flock....Bunch........anyway I'm really not sure.

If your reading and still following this AB you might know?  Keep me posted with that one.....
Anyway they are quite strong and I feel as though they could at any time flutter out from within me.....

Note to self for future reference....never watch utube videos for medical procedures.

My fear surrounds what I saw with the Picc line being put in.....it's a medical procedure in its self,and involves a scalpel and blood....I'm going to ask for some sedation! If that's not able to happen,I'm going to listen to blearingly loud James Blunt, Adele,or Missy Higgins.....not sure which one yet.


I'm hoping this will be allowed.....So I was told once I'm admitted the Picc lady will visit me to get the process started....clearly my mind is too active.....I conjure up a vision of the old advertisement  that was once on the TV "the grim reaper"..... But mine is a female and pick in one hand she's shuffling after me down the hospital corridor.....

Well today's the day.....Here's hoping it will be soon a few days ahead of time, not that I want or need to be older,or have any more wrinkles,or Grey hairs.......

I am fearful of the unknown and all the medical intervention that will soon be.....I can't look at needles,blood or procedures that are occurring to ME......

Well....time to stop rambling and begin the day into the unknown.....

Stay tuned as I venture out the trip of a lifetime.......literally.......

Sccccaarryyyyy.........

For is for Freaky......and Frightened.....

Warm Milk And Honey....

So..... It's 3.50AM on a friday morning.
My relentless visitor....Fibro.... has been and the pain has woken me several times throughout the night.
My mind has also woken me with fragmented images and and thoughts to strong to keep me lying in the coziness of my warm bed.

Note book in hand and warm milk and honey in the other here I am.....

I was asked the other day..what was I most worried about,my response immediately went in the direction of what or how my body would react to the foreign drugs that will be soon saturating my system.

But....As I am wide awake I now know that I am reflecting on how my family will be in my absence,and how I will miss the chaos that each day brings with a busy beautiful family.


I am in particular considering my teenage son who has Ashpergers...
I was being selfish when considering , he has plans to attend a sleep over just prior to my procedure and I really wanted to spend time with all family members before heading to hospital for two weeks.
I was feeling put out that he didn't hesitate to accept his friends invitation.I'm now reminding myself. Not to think of my own needs at the moment....It's actually positive for him to remain in his existing pattern for the time, doing what he would like to do.So for now I will not dwell on not seeing him before hospital but  am just mindful of how important routine is for him.


Morning routine.....I'm brushing my teeth, about to head out the door, when the regular banter between us goes something like this......
So today I have Maths , Maths and more Maths , Biology , PE , and RE.
He continues with an overview of each subject, the class room and which teacher presents him with issues or concerns,and ends it abruptly with,I'll see you tonight,have a good day,love you.
And in his mind the day then truly begins.

I wonder how the absence of the smaller routines such as this will effect him......my mind grows tired with thoughts around this up coming change of dynamics within our daily family routines .

Am warm and snuggled on the couch,gorgeous Milly (my cat) somehow managed to curl in under my arm and purring very loudly....maybe she also knows theres changes afoot in the household......
Am finally growing a bit sleeper and am hopeful that this has removed some of the chaos from my active mind at this time of the morning....pain is now shifting....will make the most of this Window of opportunity and hop back into bed for some more rest now.....

Gentle hugs for all.

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

Happy Days......

 

 So these lovely Gluten Free offerings are only part of my recent Happy morning and afternoon tea at my work place .With warmth and sincerity these amazing people wished me well for my new journey ahead.

Sorounded by smiling faces and a crazy rendition of "Your happy and you know it" I was immediately warmed by the good nature and closeness of  my workplace.
So it's actually ,finally come to count down time.....4 More sleeps and I will undergo my Ketamine treatment at the Epworth Hospital in Richmond.

Feeling anxious, and trying to keep it under wraps.....ha..ha..
I am actually exited by the prospect of a new POSSIBLE lifestyle. These are the words my lovely Dr used in our discussion late the other evening .It all brings hope ,thoughts and memories of what it was once like......It again reminded me how easy it is to still grieve the life I once new.

4 More sleeps.......

F is for Faith.......

Thank god its Friday

Thank goodness its the end of the week!
It surely must be getting closer to my Ketamine treatment which was actually originally due to begin today.Sorry for misleading you all with my countdown to the day!

I'm now waiting with baited breath for the phone call with the date.Aparently definitely prior to end of the month.

So what  a week it's been,most evenings have involved some of the terrible chest and ribs pain that is now my regular visitor. Never welcomed into my home but always manages to invade my space.

Each night I have prepared for a sleep over at hospital,after many medications......fortunately I've managed to say home! much to my own dismay.......

F is for fortunate......
I'm still trying to will myself to stay bright and positive, and I have been able to say that although there have been silent tears I feel as though I have pushed and are getting closer to new trial process for my Fibro.

I enjoyed a beautiful moment one morning this week, after removing all the ice  from windscreen and that misty windscreen you get when it's its only 1or 2 degree....

This is was I was really privileged to see ....and welcomed me back into the life that I once have known...I thought how beautiful the color of the above sunrise  truly was and how somehow maybe it was a sign to bring me back from the saddest days.

Here's hoping this will continue....

F is for Future......

For is for fighting

It's Sunday and I tried with all my will  to still stay strong last night.I  took the scary meds the hospital prescribed but was still left in the silence of my own pain with the strong presence of my unwanted visitor........"Fibromyalgia".

The intensity became very overwhelming,strong pain ozzed through my face, chest and ribs,where it soon settled with the intensity of not leaving any time soon.

I tried as I did not to complain but rang 000 soon the presence of a fibro fighter would arrive, and there would be some hope.

I spent yet another night in hospital.....until the intensity of my visitor eventually soon subsided.

I'm home aging now and and trying to not be the burden of the household.....or annoyance of a mother or wife,will be strong and think of positive thoughts.....tomorow is a new day....

F is for fighting.......which is what I am.......but For is is fabulous and fun which is what I want to be........

Here's tomorow brings a small ray of sunshine........

Today's Saturday and my flare up still rages within me.

I have rested so much and felt the effects of medication but have decided  see if I can go a day without complaint . My family have showed incredible strength as I fight this monster within me....My strength is waning and I need to change something around,I need to be feeling okay when my Ketamine treatment begins this month! I will muster my brief energies to pull myself together to also help support my family .I see the worried faces and hear the hushed conversations.....I will see what I can do.

So its Saturday and hubby is due to head off to night shift, at least will will provide him for relief of this tiresome condition . Kids will rerun later, one at work and the other two still return for tea.They will all scramble in the kitchen to create a yummy meal, and now do not even have the expectation that I will make tea.

This is their life at the moment,I wish I could be a better mum......wife and company........
When did life become so complex with multiple  chronic medical conditions to take into consideration.....

It is what it is......now I will use this method to complain but I will try not to bring a heavier burden to my family who actually endure Fibro also on a daily basis.....just in a different way.

I'm going to be brave this evening.....not take the strong medication....so will even be present with the kids....have not done this for the past several days....It's been a very vague few days of challenge

F is for frustrating.......

So here goes......keep posted and see how our emotions can travel this road....

Have decided will be like when we were all children and truly believed in the pot of gold at the end of the rainbow......

Let's see how it goes....join me o this journey until my Ketamine treatment later in the month.

Wipe Out Wednesday

It was Wednesday which,started off not too badly. As per usual later in the day became the biggest struggle.As my will became defeated by the strenth of my fibro pain that was now beginning to consume me.
I mustered the strength to leave my desk and drive home.....once I arrive home to a quiet, dark and cold home it was then chest and rib pain totally possessed my body and mind.

With tears streaming down my cheeks I searched for life within the quietness.....my 16 year old son was studying furiously and did not really even pause enough to see the pain  that I was in.
Not to give the wrong idea of my teenager but as a teenager with Asphergers his reply was.....I have priorities mum.....3 exams tommorow.......I was shattered!.......

I began to get the vegetables out to prepare tea,it was then I realized just how beaten I really was....I rang hubby who had headed off on his night shift,I couldn't even manage a conversation with the now enraged forceful pain heavier than ever within my chest.

I ran my ever trusty eldest daughter who joins us most evenings for tea.Immediently she knew......and had soon arrived to assist.It's overwhelming presence had arrived again and we made the decision to go to hospital......If it was not my heart it was certainly something which was raging out of control within me and this time I has no strenth to fight against it.

Fortunatly we were able to be seen immediently......It took some time prior to any relief being offered because of all my drug sensitivities......

The Dr admitted he had not come across Fibromyalgia before and I'm sure was off doing some speed reading....whilst awaiting my cardiac enzyme results to come back.

I was finally given an intra muscular injection....It was very painful in my bum, I just focused on my the beautiful blue eyes of my granddaughter (6 months) looking on bewildered....

My chest pain appeared to be increasing.....I felt so out of control of my own body.....crying and miserable just longing for the pain to leave.....

It didn't leave and in fact  to needed other drugs to try to urge it to go away....again it fought with the drugs and tirelessly with my exhausted body....

Another couple of nasty drugs were given to me as the next Dr on duty told me he had not treated such a severe case of Fibromyalgia.He was greatfull that I was soon undertaking a Ketamine treatment in Mel ourne.

All the staff were warm and caring....my beautiful  daughters were with me through this unpleasant experience.... And both very brave.....unlike their mother.....who had shed homeless and defeatful  tears most of the evening.

My eldest had kept hubby posted with every move as he was off driving in NSW somewhere picking up milk from varied dairy farmers.

So it was finally here were a combination of many drugs sent that nasty fibro pain away.....As I drifted into a deep medicated sleep.

My wipout Wednesday is now Friday and I'm still taking strong medication to keep fibro from visiting me again......I don't hold the strength within me to fight off its stony ability to overwhelm me and wipe me out.....here hoping my Ketamine treatment comes around really soon......Something to look toward with hope......

The shadow of my fibro visitor is still looming.......I am feeling a bit everywhere and off balance........ will rest now......

11 Days to go to Ketamine Infusion

The cool, damp, darkness of winter began to settle in for the evening and so it seems did the harsh reality of the presence of my fibro pains.

My hands were so crippled with an intense pain that my hubby ends up cutting up my tea, really not very romantic at all!
I went to bed early (as usual), at least there my possessed body could fight in the complete warmth within my comfy cocoon.

Fibromyalgia is for fighting.......
Fighting against the violent pain that thrashes against, and through your being.....every day.......

It was a long and restless night, awoken by intense pain from shoulders to elbows, from knees  to the tip of my toes.....the burning aching was engulfing my limbs.....I wish the wave  of pain would go back out....and leave my body.

It was morning again soon  and another day would begin.

The pain didn't appear to leave me and it soon accompaned me to work.
11 days to go.......

13 Days to go until Ketamine Infusion

So this really represents how I'm feeling, 13 days to go and I will begin my 5 day Ketamine Infusion.

I couldn't take my mind away from the pain today, with the wide spread ache throughout my whole being. Was imagining what it would actually be like with out it again.

I am very terrified, have read about it and watched some YouTube videos. I don't encourage others to do that.....I'm not a fan of being out of control on meds so this actually is freaking me right out, here's hoping the next 13 days goes quickly.

F is for frightened.......

I was asked during that assessment what I would really like to do again.......where to begin......

Hanging the washing, mopping the floor, all those motherly tasks that most other non fibro mums do. I was quickly redirected to the fun things...so for me, holding a book so I can read again. Although I have swapped to an e reader, I do miss my books.

Practicing my violin, walking with friends, shopping with my girls, bike riding with my hubby....the newest and very precious moment that I can't enjoy as  I now wish ..... is holding my beautiful 6 month old granddaughter.

Today's been a timely reminder of what this journey will be about, looking forward with hope and anticipation for what might be again.

F is for Fibromyalgia and future..........