Day 2 - Topamax no side effects....

I took evening dosage at mealtime and this did make a big difference....thank goodness....

The past 24 hrs have been a struggle with an increase of pain... My unwanted visitor landed into my body....and that's pretty much where he stayed for the duration of the day...

The evening being the worst with an inability to cope ....with him forcing his intensness down upon my spine.... He was harsh...some tears flowed....and I wasn't sure how to contain them....it wasn't a nice sight....and I was trying to be brave....sit...and eat tea....he allways visits at the most inappropriate of times....

Fibromyalgia is definitely the other Fword.....

Once finally asleep..

It didn't take long before I was suddenly....and surprisingly awoken with my visitor moving through my. Middle vertebrae....and had also began to hang about within my jaw...

It was quite a sudden impact of pain....I decided to have a look at the barometer whilst up taking some panadol oesteo....I knew it!!! The pressure had dropped during the night....and fibro had taken advantage of it.....so sly....

I am altlhough....happy to say I have had no ill effect of my Topamax at this stage....so exited....

So.... I found this short story which is so reminiscent of me....

Hope this gives some a better and clearer idea of how our life can truly be effected by Fibromyalgia....

I’m not taking credit for this letter, I did not write it, I found it online and sent it to everyone I know to help them understand what I was going through. I wish I knew who did write it, I would love to give them the credit here on my blog! (If anyone knows, please let me know and I’ll be more than happy to post the credit!)

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!

In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.

Have a nice day!! (ROFL),



10 best things about Fibromyalgia

(from Zazzle.com amazing website of super cool products)

I save money on magazines. With brain fog, I can’t remember what I just read!
I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
I am easy to find…I’m either at the Dr’s office or at home.
I never have to make my bed because I’ll probably be right back in it.
I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
I feel smarter than my Doctors…all they say is ‘I don’t know’
With short-term memory impairment I can hide my own Easter eggs and Christmas presents.
Before you Judge
By fibrorelief
This is not my own article but one I’ve gotten from FMS Community at

http://www.fmscommunity.org/lettertonormals.htm and felt it should be shared because it’s so true!

There are the things I would like you to understand before you judge me…

Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and sicker than ever.

Please, don’t say, “Oh, you’re sounding better!”.

I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t mean that I can stand ten minutes, or an hour. It’s likely that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct – if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you – people who are not sick for many things but most importantly, I need you to understand me.

The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author and give credit to FMS Community and link back to the original site.  Thank You.

Day 1 -Topamax for my Fibromyalgia

I was exited today today I was finally feeling well enough to actually begin the Topamax...

They are the tiniest tablets and I am beggining on a small dosage of 25mg morning and night.
It was nice....yes nice.... A word....or a feeling that hasn't been a part of me for some time.....
Anyway....nice that I didn't even know it was in my body!!!! Good things to come I hope...
.
My Fibro visitor on the otherhand....is hanging around....im sure waiting to see if it will scare him off...
He later begins to laugh loudly at it...and I resort to again lying down to have pain relief rubbed into my weary body....

It isn't a miracle cure or anything but it take the edge off the pain for a brief time and provides an hour or so of a little relief....I can imagine fibro in there during the massage moving around avoiding the strong hands in hope not to be pushed out of my body....he is sly and manages to manooever without being totally outed from his favorite. Place to dwell...my body....

I take the day very slow in the cool...
Fibro is very persistent rising and falling dependant on my will  and motivation of the time....
I managed to change my sheets...doona cover....so very exited and have been wanting to do this for what seems ages... My bed is a king size and it's a huge effort for my arms and shoulders and allways bring my unwanted visitor....
He arrives as usual....but I was happy I had a nice fresh bed....after all the disgusting...
Sweating and being sick this past week...I felt an extra urge to remove the putrid listless...lifeless...events that occurred within....

I even did more.... I shouldn't of.... But....I was on a role...

My bedroom felt like a place of imminent death....although I know it wasn't....but the dark cloud had moved in....and was left hovering....so horrid...

Time for it to go.... I wanted to see some blue clouds...

Out went the pile of dirty clothes I am disgusted to say didn't leave my floor...
Where they landed...
(so not me)
I also really sorted my hanging clothes.... I had just randomly been putting things on hangers...(again

.so not me)who generally likes an order to my cupboard...
Ok...
So ....now clothes are re  ordered...
 How I like it...
Clean and fresh....nothing dumped...or messy....but most of all the stench of illhealth has moved out...

Yeah.....

I'm feeling good I have achieved but fibro is determined to bring me down....he loves when I do this stuff and push my body....he's now spreading through my whole body....moving with such angst....

Bed time has arrived I remember to take my second dose of Topamax and club into bed to rest my Terribly a by body... My unwanted visitor is now sitting in my ribs....this is one of his best tricks.... And. It allways brings a few tears.... Feels as though someone has been smashing my ribs with a baseball bat....


The night is strange and brings weird anxious sensations and feelings....
Have decided by morning I will not take the Topamax upon going to bed...
Will try it at teatime....and hope this will result in a more rested sleep..


I feel as though I haven't slept in a century.....and am wishing for some rest....peace....and tranquility....

I'm Heading awY this coming week....time away from my inner deamons...environment....and the greyness that I bring to my home environment at present...

If I could leave my own body...
 I would... Like a cicator...snake....or yabby....leaving the old shell behind

I spoke with my family who were so happy.... This only endorsed my idea of escape...
Of my familiar  four walls....

 This is the next best thing...if I am not to shed my skin...

I will be surrounded again by love...support...and tranquility...
And will aim at finding some inner peace....revitalization....and hope of finding my new blue skies...

F is for....
Fighting...

Day 10 - Topamax....here I come....

As you know day 9 was yesterday...

And there was a definite change within me....
It was most alive I had felt for ages without being consumed by a total feeling of illness...

I managed to actually start early in the afternoon and begin to make tea for my family... To feel as though there was some self worth....made me feel brighter in its self...

It didn't take long before a huge reminder landed within my body.... A grand arrival of my old friend "Fibromyalgia" I knew the past weeks he lay some what quieter in the background....

Now he was back...this unwanted visitor of  mine....
Moving swiftly through out my body....it made it difficult to stand....and function...Making this evening meal...

I was determined to complete my task...
Today was my grandaughters first birthday.....and they were coming for birthday tea.

I was going to push through to achieve this goal....on this special day....

It was ridiculous...
So overpowering....I was fortunate my son massaged my body with pain relief and it enabled to carry on for a bit longer in the kitchen....

Breaking regular to get yet....

 another massage....this ferocious visitor was a step ahead....and continued to move and have a presence in a different part of my body....moving from one area swiftly to the next....Until consuming me....

It was very evident all medications were out of my system.....and My relentless Fibro visitor took full advantage of this...

Our birthday celebration was not as I had wished....and was long...painful....and I just wanted the day to be over.....

I barely had the strength to farewell our birthday girl...
Once the car  left the driveway....I slowly dragged my worn torn body straight into my bed.

My daughter massaged my body in an effort to reduce my suffering....I turned my electric blanket on ( although today was a 30 degree day).... And hoped the pain would subside....and my fibro visitor would leave my body....bedroom....and this neighborhood....

This night was a surprise....although my fibromyalgia worked his way into all my body parts....I was not awoken by the buzzing....and irritability of my leg thing that had consumed me for days...
This was surely a sign of better things to come.... And a sign...I guess.... The medications had left my body....Finally....

I am greatful for the genuine words of some kind people....this passing week....and how this has assisted in fighting my battle...

It is now day 10....

My unwanted visitor has stayed the night in my body...
I feel his presence as soon as my mind and body awake...

He has saturated me from the base of my neck to the very tip of my toes....feet hurting like I have ran a 50 km race.... Every joint within my hands are hurting.....and I  only imagine....what old age may feel like....

My mind is less heavy....for this I am greatful...but my body not so...

Today I have decided I will begin my new Fibromyalgia medication....

Topamax...
In hope that this anti seizure drug reduces the amount of firing of my neurotransmitters....

So I imagine this....
Huge amount of gorgeous fireworks in the sky....
Only...mine arnt gorgeous....and I'm hoping the Topamax will reduce the amount of these fireworks that are sent out...

If this has the ability to reduce the amount then...in theory it should reduce the amount of pain signals being sent in correctly to all parts of my body.

So.... Todays  the big day... Have just willed myself to have a little breakfast of ...mighty might and avocado on toast....and have had the first of my Topamax tablets....another due tonight.

AM hoping this will begin to improve my quality of life....


I noticed yesterday... Although the temperature was warm and around 30... The barametic pressure rose somewhat.. It went quiet high up to 1010  and just over...which is higher than normal...
 I have began to notice it the pressure sits between 1008 -1010 then I am able to cope with pain levels...but when pressure drops or rises above these numbers I find the pain increases significantly....

10000 is the monster number....I can allways guess when the needle on the barometer drops to this number....as it allways invites my fibro visitor in.....

Anyway....Lets see what today brings....

F is for.....Finally...

Being able to feel a bit better....and begin my new and hopefully medication.....

F is for....Future....and its possibilities

Day 9 - Weaning of meds and my Fibromyalgia..

I couldn't rest either body or soul last night.... This process would not allow for it...

There were many moments I had to get out of bed and soak the buzzing legs...

I tried several things that were within my reach in hope for any relief of the consuming pain...buzzing and overall agitation...

I settled into some show that I didn't know existed at a ridiculous time of the morning.Pycics were on tv...Ha Ha if only I could get some answers for me and provide guidance....

I tuned in for some time until finally after every process I could think of....I...fell exhausted into my bed.

It's now day 9...

I can feel hope has now made its way to me thizmorning...
There is a definite shift in how I'm feeling....and my grey clouds have changed to a shade of blue....

I'm pretty exited!!!!

Will take it slow today and see how things progress...just feeling an overwhelming sense of exhaustion... But am hopeful for the first time....in what seems ages...

F is for.....Fibromyalgia .....and the changes it can bring to a life...

Coming off my meds-day8 and my Fibromyalgia

I had a feeling of anxiousness running within me....but persevere....found my way through the bathroom.....to truly begin today's venture....

As I'm preparing for my time away from my home...
Four walls...
Out with others....

Tears begin to flow..

I feel strange about going out....and am tired and so emotive...these feelings really suck!

I'm only going out for coffee.....but my mind wanders to here....

I will need to be near a toilet...as I'm still running there often....and this stomach cramping is still so painful....
I'm feeling exhausted and don't know how much walking I can do....
What if I legs start to buzz about again....
I'm still really feeling nauseaus....

I begin to push pass these ridiculous unwanted thoughts....
Don a pretty skirt and top....matching jellerey....
Finally hair and make up...

Feel like I should have a personal trowl like bricklayers....to smear that extra thickness of cover up upon this face....cover those extra wrinkles or lines that im sure wernt there a week ago..

To cover and hide the anxieties and sadness that I feel...

Well I'm finally prepared....still feeling uneasy....my joints are aching as my fibro visitor is just reminding me....he's hanging around in the background....

I feel angry...of how I feel....where this is all headed....and what may be in the future...
Never the less...
Ready to go out and about....

My daughter then tells me where going over to my other daughters...having lunch then going out....

Immediently....I feel my posture stiffen....hear my voice change...and crack..
 I can't do this today....
Then by 5 pm have the energy to then go to my medical appointment....

I resign myself to another day within my four walls...
And I am at ease with this....

The challenge of an invisible disease is such....
People say things like....you look really good today.... Your looking great....gee I was just thinking how well you looked...
 You're lost weight and look great....
And this is my most recent....which my insides twisted to...

You look fabulous....after your break....your holiday has really done you well...(from someone who has visited in hospital and knows me well)ggggrrrrr....

The inability to see...and understand....or have people to actively listen to what you are saying....is allways an uphill battle.

I lounge around....just me my thoughts...and music until my medical appointment...
Listening to James Blunt...Adele...Birdy and Angus and Julia stone....

Lirics go round and round in my head along with thoughts of my impending future...

I feel sad and mad all at once....and want to just flee my body...

I don't think my hubby signed up to be a carer....and it now appears that's becoming his role....not in the full sense but....he managed to work insane hrs to support us while I don't have the ability too...he wins fights the daily wars of any parent with teenagers....completes many tasks around the home....and still manages to watchover and provide a positive outlook on me....

He is a very positive soul...
So I'm sure right now I'm probably drowning his positives...as I drown in it myself..and feel some days I'm really...truelly sinking....as if the weights will not lift.... Then...
Other days...

The weights arnt nearly as bad.....and I'm here present and again me....but in a lot of Internal physical pain....I just want for this to stop!!  I recently read....as I love to do.... That....the withdrawal from this medication would be 3-5 days.... And I'm still waiting....and working through the torment...day 8....and things just suck....

I've been awake half the night up and down....soaking these silly buzzing legs...
In hope for some relief...then decided just to make sure it would work...
Rubbed as much voltaren into them too....in hope it was extinguishing the bees from further buzzing and torment....I made a warm milk and honey....and snuggled up with my precious cat (milly) and watched a couple of Iron Chef re runs....

Love the chairman and his flamboyant....allways exited to see what coat he will be wearing for the episode....
Silly....but true...

I finally try laying back in my bed....I put the electric blanket on in hope the warmth on my legs will help...
I finally drift to another unknown place..

The images are bright....stark...and rapid...I know they are something but I don't remember when it shocks me into waking in a very agitated state....this process continues with my legs again beginning to buzz....
The night is lllooonnngggg....

I have made it through to. Day 8....

Will see what today brings...
 One thing I know for sure is....I will not yet begin my new Fibromyalgia medication yet....my body and mind are not yet free of the oxcycontin....

Day 8....and I wish for strength....

F is for ....
Failure....
Which I feel like I am at the moment....

But....

I'm hoping F can also be for.....Future....Fantastic...
Fun....
And no more.....Fear......

And dearly wish to enter back into....and participate in life....

Coming off meds -day 7 and my Fibromyalgia...

The past 24hrs passed slowly....

I had awoken with the buzzing very loud and powerful in my legs....and decided to submerge my worn body into the depths of an Epsom salts bath....

My overall body had a feeling of fatigue and this buzzing....moving type sensation was actually stringing me out..... I began to have silly irrational thoughts of chopping them off with an axe.... Of coarse I wouldn't even with access to the axe but.....crazy and similar thoughts were racing through my mind.....in a way to escape this strange overwhelming sensation.

I bathed until I nearly felt as though I would  spontaneously combust.. Into a small pile of ashes......here on my own bathroom floor....hot....worn....but ... a little relieved of my buzzing sensation..... I hauled myself up out .... Oopppsss only to then suddenly be overcome with the gasping type of difficult breathing....nausea upon me...
Which would occur first....vomiting or hitting the ground...

I managed to lay in a wet withered state upon the bathroom floor....alone.....gasping for air.....anticipating....to vomit....or totally pass out.....
Sweat was now dripping off my already wet body and only added to the clamminess and horrible state that I now felt.

This state of unpleasantness lasted for some time....im not even sure if I actually did end up passing out....but hay....I couldn't fall any further....so at that point....there was nothing else to do but be engulphed by the dredded darkness that chose to fall upon me....

This was the beginning of my new day....

The rest of this day was slow and nothing.....as I layer like a beached whale upon the couch....listless and fatigue....I'd lost the fight to challenge the day....

As evening drew near I managed to eat some real food....and managed to make myself make tea for our family....easy but nutritious food.....

It was difficult to eat....my stomach already felt full...
Although it was quiet empty after my diet of jelly,water and apples....

As late evening fell upon me so did the the evil buzzing within my legs again...
I dragged myself from within my bed....to soak the buzzing from within...

I finally fell back asleep when oh no....the buzzing was back....Through the entirety of my legs....from hip to toe.... I tried to fight it off...tossing and turning and thinking of things I love...

My thoughts of family...
Friends...
The beach...
My cat....
Gentle breezes through the sun's rays....and many other things mother nature has surrounded us with...

It didn't work...

I tried another tactic and got my beach relaxation CD....now this is from the rest habitation hospital...so it's a good one....

I focused so hard upon the words spoken and breathed as instructed ....
For a moment I felt nothing....and had found that I had moved to another place....my thoughts were Barron....and I was greatful.... For the first moment in a week!


After this I relaxed into my comfy familiar resting place....with a. LOL breeze blowing upon my exhausted self...

I drifted to some other place....

It's now day 7.....

I think I'm feeling a bit stronger today...
But am too scared to wish it....my sunshine is spreading its rays again today....and I'm loving that thought....
I'm feeling a bit emotive today....my daughter is determined to remove me from the house....and take me for coffee.... As much as it sounds good this would mean I will need to dig so deep...
Find some strength....with what that will take....I feel a bit insecure....About this...
And I'm not sure why....as if it's something I've not done many times before..
A new venture...

In fact.... 7 days ago over .... That was me....loved going out and about to have a Chai...Even with the last reserved bit of energy my fibro has left me with.

So I will...will myself to have positive thoughts....so for me I love the beach.....and that's what  I will use as my positive thoughts and visions to help me through the days challenges....

This is the plan for today....I just need to manoever through the shower....get dressed....and do all the simple tasks that are not at this stage so simple.....

Ok so.....I can feel a Change of attitude coming on.... My old fighting one! And I will bring out my gloves.. Ready for the day to begin...


Lets see together how day 7 withdrawal....from oxcycontin and Cymbalta go....
So far feeling a bit brighter.....yeah..... Just need to be conscious not to push my body too much....or encourage my unwanted fibro visitor to fight his way in...and reap extra havoc within my being....

Wishing day 7 is better....

F is for the today's....fight
And...
F is for frustration.....and the impatience of mine  that comes along with this process....

Coming of meds -day6 and my Fibromyalgia....

So for the past 24 hrs..... I prepared for leaving this confine of my own 4 walls...

I showered and felt a moment of the fresh day move through me like a calm consistant incoming wave....

When I approached the mirror...
I could still see a weathered
person looking back at me....my goodness....so much work to be done to beautify this tortured face today....So.....it was time to remove some of the past few days....or alternatively cover up some of what I could see and feel...

I needed to be gone with my putrid revolting sweat soaked trickies I had actually lived in like a boagan...
I chose something nice to venture outside the four walls.with...in hope my  current engulphed  body wouldn't allow the outside world to see its truths....

I prettied myself with jewelery ....makeup and even struggled with my pain and energies to spend time on my hair...
Now it was  time as to  work out how to get to the OT appointment....so readers may not know...since my last stay in hospital....I have been unable to drive my car...it's been about four weeks now...

My weakness in my left side is significant.....my hands become fatigue and pain regulary overtakes them....and I now have a small tremor in my hands.....a huge thanks to Fibromyalgia for this prize!! Or whatever other condition is currently lurking.So awaiting the nasty letter from vic roads to state..." your license is cancelled"..... Not fun! But only until further OT assessments and possible modifications to my car?

So....the transport issue is this..... Where I live is approx 15 min walk from the bus stops....the land is sloped and for any other healthy person would be doable...

For me this is not and option....I'm steadily pacing the amount I walk....(as directed) but my Fibro visitor is relentless and would absolutely take advantage of me doing this walk....I
would only be half way to the bus stop and he would appear...sending instant pain shooting throughout my body....it would actually stop me in my tracks....and  he would love  to  also lather me me with an overall body fatigue....lf I was brave enough to tackle this walk there would be then another at the other end.....
And then another two more for the trip home....my Fibro visitor would surely be laughing in my face.....as he overtook my body....it would lead to yet.... another trip to hospital....

I'm not going there....Ha Ha so today I will laugh at my unwanted fibro visitor and this will assist in keeping him at bay a little. Longer....   My win!!

I am fortunately gifted with gorgeous daughters who offers to do the trips with me...
By this time of the day I am fighting back the notable presence of my unwanted visitor....I am so naseaus still from withdrawal.....
And am still also dashing regular to the toilet with the persistent cramping attacking my gut....
So I'm at the OT who goes over the whole assessment process....it sounds long and scary....and to be honest everything will be swinging on it....
I absolutely love my work....it kind of defines who and what I am....and it brings satisfaction....forfilment. And the unknown to me each day......love....love ...
Love what I do....

I work for an amazing non for profit organization Noahs Ark...
 And I am an Inclusion Support Facilitator Team Leader.... And have a small team. Here consisting of 4. And another team member sitting in swanhill and another in mildura....

We play a consulting role....and visit all commonwealth funded early childhood services across our region....our region is quiet large geographically and the dynamics of each area significantly different...

We support children with additional needs....Indigenous children....refugee children....High support children....

Our role is go visit the services....meet with the Educators and support with strategies...resources....training...and funding if necessary for additional workers to provide that additional support for the care environment.
The Educators often utilize us as their sounding board when they are struggling emotionally with their daily struggles...around....how to implement change.... Work with extreme behaviours...how to arrange specialized equipment....
Guidance around sexual or physical abuse....and many other environmental factors...and these are just some of the things my day may bring during my work day...

I feel gifted to have a role that makes a difference in the day of a child's life....and feel how lucky I am to work with also a larger team of amazing passionate people so warm and kind.....

So that's my work life in a nutshell shell....and you can see why I'm so passionate about it....and why the importance of my lisence is so huge at this time...

Damn Fibromyalgia..allways getting in the way of plans....

Well the evening soon arrived and my legs began that strange thing again...

The withdrawal thing.....the buzzing....humming.....and moving.....of a life force of its own.....in my legs!  The night was very restless with many wakefulness periods of scattered thought....it was as if I was watching this madness in front of me.....and I couldn't stop it...
Thoughts and images came thick and fast....something like this...


It began with the physically feeling in my legs....which led to...

What will I try...hmmmmmm. The corks in my bed.... The old wife's tale that believes something in cork helps irritable legs....

So I go and scrounge  around and put my stocking filled cork holder in with my legs...(which has previously worked for irritable legs)
Only to find that's not working....my mind then travells into this story and vivid imaging....

Now imagine this flashing before you....just like some old movie.....


Well I know why it's not working! This wife's tale was not made for opiate withdrawal.....im sure back when this was created they wore....

The women in long dresses living in the bush.....with those long aprons on....and the men with big hats....they rode the horses and they all lived in those log cabin homes built by their own hands....are you seeing this yet.....vivid images pass through my head.... They are in the times when they eat off those tin plates....and when men drank grog from a glass bottle....a little representative of today....but they had limited option to do this....no glasses as such like now....and I don't think the wife's  even drank....children ran around....boys in their three quarter pants...with buttoned shirt, tucked in with braces attached to their pants....the girls in pretty long dresses, similar to their mothers....just miniature sizing....they all looked happy and content running through the bush like earth children...
Making their own fun and enjoyment....


Anyway....images moving quickly kly before my eyes of this short film.....

So....the corks don't work...
 In those times....in the bush....they did not have todays range of pharmaceutical wares....some narration begins with these statements.....

So no withdrawal from the opiates....no relief from the corks....

The next short film begins.....flashes of the era in China of the opium trade...
And the darkness and lucrative opium trade war....

There power....money....and greed.... They actually didn't want to part with their opioids..
So no corks needed there.....

Images of gowned Asians...they gorgeous fabrics drapping their bodies leading to the ground...they were the heirachy....and better dressed..

Colours so vivid..

The hustle and bustle on the warves with the trades being shipped in....earthy basketware all around...and foreign language flowing through the air...
Secrative and lucrative meetings taking place....


This is how my night proceeded....day 5 going moving into day 6....where the he'll is the relief from this anguish.... This is all so unknown to me.....such a foreign  and vivid visitor....


I can't stop the voices...images and awake with the leg buzzing....I go and soak them in Epsom salts in hope for a little relief..and tune into the letterman show...
So far away from my own recent history lesson of imagery.....the Colours...the graphics....the whole experience...


Our world is so far from what was just showing in my mind...
I wonder how that imagery even came about....


It's finally another day....the beam of sunshine did not wake me but the buzz and the agitation of my legs returned to remind me....
Never to take oxcycontin  for my Fibromyalgia again....

Today I am thinking about me...again... And what has transpired the past week...I have had pain...tears...sweat...and agony...and agitation...

I have aggravated those I love...
Pushed them away....or drew people into my darkness...and complicated...uncomplicated situation...
Silly words...thoughts and actions.....

For that I am truly sorry....and for that I truly hate my fibromyalgia...and all it brings with it.....and the havoc and uncertainty it brings to my life...


Today is day 6 coming of my meds...
 Here's hoping....with each new day these symptoms will lesson..

Keeping my fingers and toes crossed for better days to come....

F is for Fibromyalgia...

Fatigue....
Frightened....
Frazzled...

Weaning off meds -Day 5

With advice from a grounded....kind.... and knowledgeable new friend..with a wise old soul.....(Which was to focus on something else)

I dragged my body through the shower....sitting on a seat in the shower so that when I fell I didn't fall as far....and the result would not be so nasty...

My blood pressure is allways relatively low but was now sitting on 85/49....i felt as though things moved by my being in such rapid motion....thankfully this came and went... I could see.....that was my positive for the day.

I tried really focusing all my thoughts ...and detach my thoughts from my body...I knew I need to do this or today would be an even heavier task for me.

The hot shower helped a little only....this day I was wishing I was in my safe little sanctuary....In melbourne with....what we call family....the true ones that care....and are allways there..

Beside the unconditional love J's  family brings to us....they have an amazing.....wonderfull....shower....

Now if you are reading this and have fibromyalgia you will know what I'm saying.....the little things are so important to us.....

It's incredible water pressure and massage kind of nozzle showers you with relief on every painful part of your body..
So this is what I was wishing for on this day....Ha Ha....of all things...

Anyway...I decide that I must get some fresh air into my withering body....as it actually feels as though it's dying....
My daughter takes me to a nearby lake to enjoy a walk....a very very slow one...but hay...I got to push my grandaughter while my daughter went jogging...it really helped eliminating some negative emotions.
The air was crisp...and the ripples upon the water lapped toward me to greet me....as if they new it has been some time since my last visit...
It was nice....If even for a short while to breath some fresh air....and life back in into both body and soul.
The rest of the day was long and hard but I forced myself to push on...and keep busy....as much as my fibro body could.

I decided if my mind was busy....I would be okay...so...
I decide to breath some life also back into my living area....remove the few weeks of dust that had sat and stared at me....and the dead flowers still in the colored dead water....

Opened the Window...
Let in the gorgeous crisp air....
Got rid of all the dust....
Removed the dead flowers and re arranged things to better suit how I'm feeling...
My son vacuumed the house....
Things were now not as stagnant as they were....


When evening came...my legs beagn the strange thing again....and my tears flowed....again.....
Hubby wanted an explanation as to what it was....how it felt...All I could say was....
Cross between something crawling....hurting...moving....and irritable legs x 100
It only made him feel frustrated and get upset because I could explain it properly.....??????

There was simply....no other way....

So... With my leg struggle....my inability to have this conversation and painful stomach cramps....I wasn't a good look....

This was how my night began.... But I was so desperate I filled a bucket with hot water and Epsom salts...full well knowing it wouldn't help....and it actually did.....
That was my savior....of sanity and of more tears....

I quickly went to be while it was settled and actually went to sleep.
And yes my night again was very restless.... But not as savage as the previous night...

Hoping this is a sign of better things to come....

The new sun of the day is now shinning....there looks to be a crispness in the front trees as they sway to the motion of their life..out .In our natural environment...and our big wide world..... swaying  in the morning breeze...  
It looks gorgeous.....

My whole body is consumed by an ache....my Fibro ache...or a withdrawal ache....they are similar...so either way....this is my morning...

But...

Today....I feel a heaviness has lifted from me.... And the darkness is fading.....Yah.....

Today is a new day.....and I'm actually smiling....

F is for.....fading.....which the darkness is doing.....

Weaning off meds-day 4

The night was so....so looonnggg......

My body riddled with unfamiliar sensations buzzing through both my arms and legs....and I thought restless legs were bad!!

I had been off balanced all day with a queezy uneasy feeling engulfing my whole body....Even walking was difficult.The day passed but last night was horrific....

I tossed and turned....cried....got up and down all night and hoped panadol would lessen the pain and sensation in my limbs...Ha Ha... It only laughed back at my body and continued raging the war within me....

I was sweaty....and then came the intense gut wrenching pains trying to rip my stomach apart....I could only lay in silence....In the darkness....and cry....again!

I wished for the darkness to soon lift and impatiently waited for that magic beam of morning light to appear through the curtain edge....it did not come....well not while I waited anyway.

The night was the longest ever....I wish the DR so  could have told me that coming of the meds would be so harsh....I only imagined it would be difficult....and luckily took this week of work as well.

I just didn't actually have any clue!! I was stupid to think it would be just a challenge for a day or so....
It's actually a nightmare....and it brings all of your life's miseries with it.....
It engulphed you....keeps you in the dark....and holds you there.....for what seems an eternity...
Until the morning light finally filters its way into your internal fight.

The sun is well and truly. Now and I have managed to eat and keep down a piece of fruit toast....although I'm just wanting to eat jelly.....

It's quiet in our home now....although it's sunday hubby and daughter are at work and my son has his head buried in books for the coming weeks exams.

I'm not quiet sure what to do....im not going to even try to close my heavy tired eyes....im too fearful of what it will bring.... But I'm so uncomfortable I just don't want to do anything....nor do I have the strength.....I feel so crappy I must look like hell....
 I see a pale and tired face starring back from the mirror....it looks as though it's strength has wained ....and doesn't quiet look familiar to me....

I need to get through this....and hope it settles soon....I am going to urge myself to shower and hope the flow of warmth over my worn body makes me feel a bit brighter....

Will see how things progress over the next 24 hrs....

F....is for still fighting.....

Weaning of medication...

So I have again been engulphed with this wakefulness during the night.
My mind has been racing.....and tears were flowing....my mind was full of grieving of what I once was....and what I have now become....and the feeling of somehow feeling incomplete....

Thoughts of.....why....and how I will be able to endure this condition....and what it brings to me in the future.Is this relentless Fibro visitor going to just loitering around within me and reap havoc at his discretion.....with no warning....or with no reasoning....

The process of discovery that I also going through with all other added symptoms.... Questions for myself that I can't yet respond to.... Do I have Muscular Dystrophy.... Or Parkinson Disease.... And all of the unwanted anxiety that is associated with this un known journey of medical testing.....

My mind wanders to other places I don't particularly want it to take me.... Of old memories...world changes...and challenges.... And of coarse all current news and events with the world...
Children....and their rights and the worthiness and power  of the UN rights for children.... And how future changes will hopefully be brought about.....and how these things will effect things of the past....and those of the future....

I'm hoping as I progress through this drug weaning process... My mind will again relax....my eyes stop flowing.....and my anxieties decrease....and the darkness will  lift....


My mind and body are exhausted and I feel as though this internal fight is a contaigon I'm passing along to others.... Everyone's anxious....
 And I think I'm the cause....I don't mean to stress... Or hurt....or burden others....
 And I now just wish for this time to pass...

I'm going to today gather my strengths....use them to push myself to enjoy the gorgeous day that is.....
Try to relax and go with the flow...

The sun's warmth will shadow and embrace me and hopefully bring a lift to both body and soul...

Here's....looking forward to the complete process of weaning off this medication....Things to settle internally and for the new process of a new fibro medication to begin...

The future will be bright and beautiful....I just need to be strong....positive.... And hang on to to former fighting spirit..... Or actually find it again......

F....is for fighting.....as I work through this pharmaceutical nightmare!!

For is for...... Future....

The roads I have taken recently have been long...
Bumpy.... And so damn dusty....

Have found it so difficult to shake my fibro visitor...In fact his strength has gained as he has weakened my energies.... And drained my soul.

I have spend considerable time in hospital...and even they find my unwanted visitor difficult to shake....he just laughs in their face....they bring out their big guns....mainly oxcycontin as it appears to be the only one I tolerate.

 My unwanted visitor weakens but he still lingers....leaving me weak and ready to anticipate the next frightening visit.He's also found a way to push his way through and bully my other organs as well.He stopped my bowell...
Then at the same time my bladder! He definitely is my bodies bully....and is forever having the other organs running scared.It hard to stop his intimidation and get them all back on track....
He is relentless....and now regular laughs out loud at all the medical profession.

I'm putting great hope and faith in me pain management specialist at the Epworth....not only his good looks and charm.....but I feel that he's has a great approach....actually listens and then we approach it together how I want to.....

I'm still having to go through nerve and muscle testing.... And cannot currently drive due to hand and arm weakness....Here's hoping this can be worked through in the coming weeks.My fibro visitor has already removed much of my former life that was once....
I don't need to also have my independence taken away...

I long for fantastic things to come in the future....independence to be returned.....  True friends to listen and support..... And a possible way of managing my inner battle with the daily challenges.....

I certainly don't show outside my home.... The truth of the inner battle going on.... It's hard work.... So it would be great if the battle didn't have to be fought on a daily battle...

Let's see how my unwanted visitor takes advantage of me as I am currently weaning off the Cymbalta and oxcycontin.Little does he know in a week or so I'm going to fight back....with avengence! Trying a new medication that is an anti epileptic drug....it is supposed to reduce the amount of neurons that are currently being fired off...see what he thinks of that!!!!!!

Any way will try with all my might to re continue to blog...my and you too can see how it goes...

F is for...


Future and Fibromyalgia.....