So last night was very restless,with wide spread aches and pains and anxiety about the approaching treatment.
The morning began early after little sleep. Before I knew it we were making our way through the busy,chaotic streets of Melbourne.
So here I was.....entering what I had felt so anxious about for the past few days. I was guided to a distant lift,was very greatful no mountain of stairs were waiting for me.
I entered into a large modified place which looked to accomadate
everyone's needs, no matter how extreme, or additional they may be.
It all began with the psychologist that I immediately warmed to, she was compassionate and somehow realistic but knowledgeable.
As with many of these type of discussions came a barrage of questions, but her style was gentle without intimidation.....It was very positive, although at times some tears were shed.
Next to see me was the Physio, she was a bright bubbly young lady. She was thoughtful and did not repeat previous questions, much to my surprise. I was required to do some walking whilst she monitored me. Later, discussions about pain levels after the exercise, by this point I was having a pretty good day.
Another gentle soul entered the room...you know how when some people begin to speak, and the way they look with the warm caring eyes? You know the sort......This was my OT. This gentle soul allowed me to go at my own pace, no pushing, no expectations and measured the strength in my hands......not so good.....I had to then lift a crate with small weights in it, this had to be done from waist up to eye level. I knew straight away my fibro would increase its intensity, it doesn't like to be overworked, let alone do something out of the ordinary! And as I expected, it soon came and visited me at this appointment, must have known we were having discussions about it. I proceeded to do more weight carrying in the shape of a couple of shopping bags. Fortunately my incredible hubby does all the groceries, and this was a quick reminder of why.
It wasn't long and I was able to have a lunch break, by then my pain was beginning to drain my energy along with some hope I was feeling earlier in the morning about my good day.
It was later in the day by now and my appointments had been juggled some what, they were so, so, accommodating and to make up for the gap in appointments were kind enough to slip me into a relaxation session with a psychologist.
I'm sure like many of us...... I had tried this in the past, so was a bit sceptical as I was asked to relax and close my eyes. Much to my surprise I found at a couple of points here and there where I lost her voice in the darkness of my mind, it was amazing......It was actually working!
As the day was getting later and Fibro getting heavier.....I was finally called to my last assessment.
Immediently I could hear that this Dr. was quite experienced with Fibro and knew exactly was I was talking about, what a relief....
So I began to feel a little bit of hope nudging into me.....We discussed the plan of a twelve week program where I would attend for two days a week.This involved the pain management team I had just seen, together I would be taught pain management strategies and begin the bio feedback process.This is what I had been anticipating hearing about all day.This would mean when I would undertake an activity, I would be viewing the feedback and stress level from my body at the same time. I would be taught with my mind how to reduce those levels whilst monitoring it, and this would be fed back into my brain and system.Well.......that's my interpretation of it.
But this is about when hope really came to visit me because this amazing Dr offered me another treatment he felt would compliment this rehab program.
As I write this I am even smiling with some hope rising within me.......
This appears to be a trial with Fibro sufferers called "Ketamine Infusion"
Ketamine is an anesthetic agent,which can be used in smaller doses to control acute or chronic pain.
It is useful for severe pain which is not well controlled by other drugs.
For chronic pain,Ketamine is given over a coarse of approx three to seven days then ceased.This may follow by further courses when the pain returns or severity increases.
Ketamine is used to block neuropathic pain.It is a NMDA, (a type of pain receptor)calcium channel blocker and works at the NMDA receptor located in both the periphery and the dorsal horn of the spinal cord.
Ketamine is a continuous infusion administered intravenously through a cannula into arm.
When receiving this for the first time the amount of drug administered is slowly and increased every hour according to tolerance. Ketamine can cause many side effects and is monitored by nurse and blood pressure,heart rate,respiration are monitored every hour for the first twelve hours.
Side effects can include,light headedness,facial numbness,vivid dreams,hallucinations,elevated or lowered heart rate and blood pressure,disassociation,dizziness,nausea and altered sensations.
So this is now the treatment that I will be undergoing for five days,the will have five days of intense physical rehabilitation straight after the Ketamine treatment.
Although I am very nervous and a little fearful of the drug induced state it may bring I'm feeling like their is now some hope!
Stay tuned and I will let you know when this begins, it sounds like it will be within the next few weeks.
I will attempt through the treatment to blog as much as possible but I'm guessing that will definitely be dependant on my ability of the day.
For those of you in this part of the world stay cozy and warm....
Hope to talk soon.....
Wednesday, May 30, 2012
Saturday, May 26, 2012
I am about to soon embark on a treatment for about a twelve week period.
Here's hoping it will give me a small ray of sunshine and hope to the many silent sufferers out there.
F is for Fibromyalgia........Forfilled........Family........Forgiving........Fantastic........Future......
Well, firstly to begin with my story so you have a clearer picture of my journey.
I am in my early forties, a wife, and mother of four individual and courageous children - all who live with the agonizing affects of Fibro when it visits our home.
I work in a role that I am really passionate about and I am constantly grateful for the daily rewards it brings. I am always surprised at how I can work to empower and build capacity of others but can't always fight the big battle of Fibromyalgia.
F is for Forfilled........
As most of you know the daily battle begins when the alarm sounds, after what seems a constant state of painful wakefulness throughout the night.
My now strategy involves counting to ten, then I tell myself it's time to move this aching body out of my warm bed. It's another struggle but the day has to begin.
I again repeat my counting process until I'm so frustrated with myself and the passing time that doesn't wait for sickness .........and I begin my day.
It is about here I should mention, I have several other conditions that seem to also place other boundaries upon me. My blood pressure is so low I regularly collapse in the morning and usually in the shower and several times after getting out. My trusty cat will often sit alongside me as if to protect and offer comfort at this time. I have finally managed getting dressed and with the ever aching morning shoulders attempt to blow dry my hair. I actually had much of it cut short to avoid this but unfortunately my hair is so thick it doesn't even dry in the cooler months without blow drying.
I somehow figure, even though I feel so terrible if I look ok within my presentation at work, no one will notice my true pain and at least I can blend in and have a slower...... but somewhat normal day. (Well, that's my dream).
My body hurts so much by now that I struggle to eat breakfast. I take a substantial lunch to work to help keep me going. My fussy but caring husband has packed this protein rich lunch to help me through the day, along with my cocktail of medication........ I head out the door to begin a new day.
With the enjoyment I get from my work I can sometimes overcome some or even a little of what I am feeling. I've found that a smile can assist with being a great camouflage, and if you have the strength to smile at others, you will mostly receive one back, that's always good medicine for me (and cost nothing).
So by now the coolness is setting in the evening air. It's a total struggle with my strength and will to just hold myself upright. I can now feel it's presence hovering over both my body and mind.
I push through with all my inner strength until I'm home in my warm comforting cacoon, where I am soon surrounded by support, love and acknowledgement of what's truly going on. I'm now tucked in a warm bed after another batch of medication. This is all that can be done to cope with the desperate and inadequate feelings shadowing my being.
F is for Family.........
Moving along....slowly....to where it actually all began.....Some three and a half years ago. Apparently, after my responses to the Black Saturday fires that devastated our community and many others across the state of Victoria, my Fibro began to visit and certainly made its presence known.
For is for Forgiving...........
I, just like many of you have tirelessly tried many treatment approaches.
Varied rubs, hot and cold packs, billions of pysio appointments. GP visits, Rhumatologists, Neurologists, CT and MRI scans. Multiple drug therapies - some ok, some horrific. Vitamin and mineral therapies, tonics, raw green vegie juices and exercise coupled with pain management classes. The list goes on...
I actually can't count how many trips in the ambulance I have had so far this year, but I guess the simple fact I now seem to be on fist name basis with a couple of the ambos says something.Thank goodness for Ambulance cover.....They are amazingly compassionate and always very respectful.
I'm not sure if this sounds at all familiar to anyone else but would love to know.
The absolute worst Fibro pain for me is the chest and rib pain. It engulfs my chest with a heaviness and movement like all of the Fibro particles are flowing through each and every cavity of my chest. Its visit is frightening and overwhelming and has the desire to always command my body and bring with it the flow of tears and inability to cope in its powerful presence...........I wish it would leave the room. It debilitates me upon every visit, and because I also have a rare Heart condition it is always an emotive time for us all.
The above events have been a regular occurance within my home this year.......
About here and now was where I really began to search for even more information or treatment that could be a possibility.
So that's what has lead me to embark on not just a new treatment but also this blog. I'm hoping to meet others that are too feeling challenged by this and I feel that this is a positive way of networking and the only opportunity that I really have to have these type of discussions.
I don't know anyone personally with Fibro and do not have access directly to a support group. Please join me in discussions and support, with hope we can also raise awareness of the daily difficulties we share.
I will keep you posted with my events....It's about to begin on the 28th of May so I hope to share more then......I look forward to feedback.........Gentle hugs to you all .......
F is for Fantastic Future.
Here's hoping it will give me a small ray of sunshine and hope to the many silent sufferers out there.
F is for Fibromyalgia........Forfilled........Family........Forgiving........Fantastic........Future......
Well, firstly to begin with my story so you have a clearer picture of my journey.
I am in my early forties, a wife, and mother of four individual and courageous children - all who live with the agonizing affects of Fibro when it visits our home.
I work in a role that I am really passionate about and I am constantly grateful for the daily rewards it brings. I am always surprised at how I can work to empower and build capacity of others but can't always fight the big battle of Fibromyalgia.
F is for Forfilled........
As most of you know the daily battle begins when the alarm sounds, after what seems a constant state of painful wakefulness throughout the night.
My now strategy involves counting to ten, then I tell myself it's time to move this aching body out of my warm bed. It's another struggle but the day has to begin.
I again repeat my counting process until I'm so frustrated with myself and the passing time that doesn't wait for sickness .........and I begin my day.
It is about here I should mention, I have several other conditions that seem to also place other boundaries upon me. My blood pressure is so low I regularly collapse in the morning and usually in the shower and several times after getting out. My trusty cat will often sit alongside me as if to protect and offer comfort at this time. I have finally managed getting dressed and with the ever aching morning shoulders attempt to blow dry my hair. I actually had much of it cut short to avoid this but unfortunately my hair is so thick it doesn't even dry in the cooler months without blow drying.
I somehow figure, even though I feel so terrible if I look ok within my presentation at work, no one will notice my true pain and at least I can blend in and have a slower...... but somewhat normal day. (Well, that's my dream).
My body hurts so much by now that I struggle to eat breakfast. I take a substantial lunch to work to help keep me going. My fussy but caring husband has packed this protein rich lunch to help me through the day, along with my cocktail of medication........ I head out the door to begin a new day.
With the enjoyment I get from my work I can sometimes overcome some or even a little of what I am feeling. I've found that a smile can assist with being a great camouflage, and if you have the strength to smile at others, you will mostly receive one back, that's always good medicine for me (and cost nothing).
So by now the coolness is setting in the evening air. It's a total struggle with my strength and will to just hold myself upright. I can now feel it's presence hovering over both my body and mind.
I push through with all my inner strength until I'm home in my warm comforting cacoon, where I am soon surrounded by support, love and acknowledgement of what's truly going on. I'm now tucked in a warm bed after another batch of medication. This is all that can be done to cope with the desperate and inadequate feelings shadowing my being.
F is for Family.........
Moving along....slowly....to where it actually all began.....Some three and a half years ago. Apparently, after my responses to the Black Saturday fires that devastated our community and many others across the state of Victoria, my Fibro began to visit and certainly made its presence known.
For is for Forgiving...........
I, just like many of you have tirelessly tried many treatment approaches.
Varied rubs, hot and cold packs, billions of pysio appointments. GP visits, Rhumatologists, Neurologists, CT and MRI scans. Multiple drug therapies - some ok, some horrific. Vitamin and mineral therapies, tonics, raw green vegie juices and exercise coupled with pain management classes. The list goes on...
I actually can't count how many trips in the ambulance I have had so far this year, but I guess the simple fact I now seem to be on fist name basis with a couple of the ambos says something.Thank goodness for Ambulance cover.....They are amazingly compassionate and always very respectful.
I'm not sure if this sounds at all familiar to anyone else but would love to know.
The absolute worst Fibro pain for me is the chest and rib pain. It engulfs my chest with a heaviness and movement like all of the Fibro particles are flowing through each and every cavity of my chest. Its visit is frightening and overwhelming and has the desire to always command my body and bring with it the flow of tears and inability to cope in its powerful presence...........I wish it would leave the room. It debilitates me upon every visit, and because I also have a rare Heart condition it is always an emotive time for us all.
The above events have been a regular occurance within my home this year.......
About here and now was where I really began to search for even more information or treatment that could be a possibility.
So that's what has lead me to embark on not just a new treatment but also this blog. I'm hoping to meet others that are too feeling challenged by this and I feel that this is a positive way of networking and the only opportunity that I really have to have these type of discussions.
I don't know anyone personally with Fibro and do not have access directly to a support group. Please join me in discussions and support, with hope we can also raise awareness of the daily difficulties we share.
I will keep you posted with my events....It's about to begin on the 28th of May so I hope to share more then......I look forward to feedback.........Gentle hugs to you all .......
F is for Fantastic Future.
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