Feeds:
Posts
Comments

Posts Tagged ‘Fibromyalgia’

“What you do, the way you think, makes you beautiful.” Scott Westerfeld, Uglies
#Medical Alphabet Soup

image from commons.wikimedia.org

That which God said to the rose,
and caused it to laugh in full-blown beauty,
He said to my heart,
and made it a hundred times more beautiful.
Rumi
Illness: the final frontier. These are the voyages of the Starship medical ship Disease. Its five-minute mission: to explore strange new names, to seek out new diseases and new acronyms, to boldly go where no few doctors have willingly gone before.

Some of you may have noticed that I have been “Missing in Action” for a few days.  I literally jumped onto WP and dropped in a few songs and jumped off. I haven’t been in a good place and I wasn’t sure I could get my brain cells to co-operate enough to write something which was going to come out coherently.  Well, here it is and something a little different, a rant with an edge.

I had to attend an appointment with my doctor. I’m reaching  have reached the point where I detest going and feel infuriated when I am returning home. It makes going there counterproductive. I have always had an inherent dislike for the labeling system, and not just within the medical fraternity. It is endemic in society.  Now, it isn’t enough to append labels to everyone, thereby dehumanising people by placing them in an arbitrary group for the benefit of…..who? The Government? It’s almost irrelevant if it wasn’t so invasive, but its aim is so that we are able to be “controlled” with greater ease.

Not content with being labelled and grouped we are now being reduced even further by being diagnosed as little more than a group of letters. Such as:-

ADD  and ADHD Attention deficit hyperactivity disorder (ADHD) is a disorder that appears in early childhood. You may know it by the name attention deficit disorder, or ADD. ADD/ADHD makes it difficult for people to inhibit their spontaneous responses—responses that can involve everything from movement to speech to attentiveness.

http://www.helpguide.org/mental/adhd_add_signs_symptoms.htm

The information I found basically made ADD and ADHD into one category. All the signs, symptoms and treatments appeared almost the same. They appear to simply transition adults with greater ease if they are placed in the ADHD basket.  By that I mean if a child is diagnosed as ADHD they move into adult ADHD, there appears to be a very small number of adults referred to as having ADD.

Bipolar Disorder Bipolar disorder is the name used to describe a set of ‘mood swing’ conditions, the most severe form of which used to be called ‘manic depression’.

http://www.blackdoginstitute.org.au/public/bipolardisorder/bipolardisorderexplained/ 

Bipolar is treated the same as any other ‘mental’ disorder. It appears that any depressive illness is graduated eventually towards Bipolar, a nice easy fit for the sake of treatment.

#Medical Alphabet Soup

image from theredpillnews.blogspot.com

ME/CFS – (Myalgic Encephalomyeltis/Chronic Fatigue Syndrome) suffer from post-exertional malaise (flu-like symptoms following activity). CFS is a neurological condition that can affect children and adults of any age. Other symptoms include pain, disrupted sleep, difficulty thinking, and changes in blood pressure, hormones and body temperature.

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Chronic_fatigue_syndrome

FMS – FibromyalgiaFibromyalgia (Fibro) is a name given to a group of symptoms marked by generalised pain and muscle stiffness. These symptoms can be felt in all different areas of the body. Extreme fatigue (tiredness) and sleep problems are also common in fibromyalgia. Fibromyalgia does not cause inflammation or damage to the painful areas, but seems to be due to an over active pain system.

https://www.arthritisvic.org.au/Conditions-and-Symptoms/Fibromyalgia

These last two are cut from the same cloth. All that is being done is simple semantics being argued. Post exertional malaise is different from muscle soreness and stiffness? It wasn’t when I went to the gym. Tiredness and sleep problems are the same as disrupted sleep – within parameters. It is all another way of segregating people into nice little baskets and putting labels on them. But why?

This may seem like a gigantic waste of time, however, my point is that the medical “powers that be” are manipulating the terminology to describe various conditions for their own purposes. Purposes we are not made aware of.

Whilst one source will say that ME/CFS will occur often with Fibromyalgia, another source will declare that FMS and ME/CFS are totally separate ailments. Yet the descriptions themselves show overlaps. I’m not wishing to be contrary, however, I am trying to show that this is a veritable minefield when someone is trying to find out what is happening to them, and getting a diagnosis.

Many of those who have been visited by one of these delightful acronyms over the years, have battled for years to get a differential diagnosis from ONE doctor, let alone a consensus so we can get the best treatment possible. Most of the time we have to struggle on alone, trying to get someone to ‘admit’ there is ‘something’ wrong. Not only is it wrong, it is criminally wrong.

In my opinion, splitting each part of the symptomology into small groups and relabeling it slightly, is another way for “the powers that be’ to be able to say, a smaller percentage of the population is ‘suffering’ from this or that ailment.  Then the real fun begins as they hyperventilate over which medications can be given to which group of people to treat their specific symptoms. Is this a cost cutting exercise?

Why has this latest visit caused so much ire? As many will already know I was diagnosed with Lyme disease last year. It doesn’t exist in Australia, according to the ‘powers that be’ and that creates a bucket load of problems, not least being there are no doctors who have the authority, from the Medical Association, to treat you. Some of the symptoms for this delightful ailment are, ‘flu like’ symptoms. In its lesser aggressive state it can cause inflammation of the joints, especially the knees, (arthritis.) The heart can be affected, (heart failure), Bell’s palsy, meningitis and so on. The arthritis of Lyme disease can look like many other types of inflammatory arthritis and can become chronic. Anxiety and depression occur with an increased rate with people with Lyme disease.

But it doesn’t exist here so I don’t need to worry.  My GP does not recognise that Lyme exists in Australia and therefore I do not have it. I’m not doing terribly well and I need to understand what’s happening. After all, it is my body we are talking about.  I’m a good researcher. It’s what I do when something bugs me. I research and my results led me to Fibro. This has been going on for years. I’m listed as a ‘chronic pain’ sufferer. The ‘argument’ is that Chronic Pain is an accepted diagnosis so why do I need to find out if it is Fibro? Simple – I need to know so I can understand what I can do and where I can go to get help.

Under pressure – I was finally told, Yes, I have Fibro. Chronic Pain is Fibro. I cannot have an operation because my spine is Swiss cheese. I have had this for so long it has degenerated too much to do anything with it. Let’s have a Party!

#Medical Alphabet Soup

image from opencaremedicalcenter.com

So I now have a generalist who says I have Lyme disease: who isn’t allowed to treat me because the Australian Medical Board has restricted his license. Why – well it doesn’t exist here and he was stupid clever enough to make a ‘you tube’ video advertising his treatment of it. Smart move! I also have a Medical practitioner who says it doesn’t exist so he won’t treat me for it. I have Chronic Pain, or Fibro, or both, or ME/CFS.  And they wonder why people get depressed or anxious!

Sarcasm is the final stand for people who are being ignored or not listened to. I shouldn’t need to be as wealthy as Rockefeller to get good health care. I shouldn’t need to go to the UK or US to get medication. I shouldn’t have to wait an additional ten to fifteen years to get medication already approved and in use in those countries.

#Medical Alphabet Soup

image from http://www.label-makers.com.au –          Is this our future?

Reducing every ailment or disease to an acronym, for convenience, not only depersonalises the situation it also dehumanises those affected. We are not numbers, nor acronyms. We are not our disease or ailment, we are people and should be accorded the dignity that warrants.

I have one final theory – is this a concerted effort of ‘the powers that be’ to introduce eugenics in the population under the guise of ill-health? Now that is a scary thought.

“You can truly value life, when you have looked Death in the eyes and held its hand.”
Lionel Suggs

Blessings, Susan x

© Susan Jamieson 2014

#Medical Alphabet Soup

image from fineartamerica.com

Disclaimer: I am not a doctor and hold no medical qualification. All the descriptions used are taken from an Internet search and relevant bodies who advise on these conditions. All opinions stated are mine.

Read Full Post »

#Today

image from lionhearteagle.blogspot.com –

“Finish each day and be done with it.  You have done what you could; some blunders and absurdities have crept in; forget them as soon as you can.  Tomorrow is a new day; you shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.”  ~Ralph Waldo Emerson

Today

Today I gave in. For one brief moment which lasted an eternity I gave in. My body keeps going but my mind, that part which recognises the pain and despair; it had decided it had more than enough.  It said, “No More, Enough is Enough”.

Am I a quitter, I asked myself? I always thought I was strong and capable. I believed I could handle anything. I’ve heard of worse things than people should ever be expected to go through and felt their pain as I listened. I’ve seen some horrors I never thought I’d see and dealt with them as I needed to. I blindly walked through the path of domestic violence because I refused to believe it was happening to me.  I handled what was put before me and came through scarred but still me.

How do you explain to someone that, you thought that, being married meant “supporting your husband” and that everything he said you “had to do”, you had no choice in? I’ve carried bricks like a brickies labourer, carted cement like a concreter’s labourer. I’ve carried and rolled thousands of square metres of turf, barrowed topsoil and leveled it, built walls, sawn and carried timber and a hundred other things because, that’s what being married was all about. Doing things together and supporting your husband. It meant I was a slave to someone’s “ownership of me”.  Until the day my eyes were opened and I finally had enough and left.

#Today

image from facebook.com

What caused my back problems?

Yes, I’ve had two ‘minor’ car accidents and according to the ‘experts’ I had two “minor” whiplash episodes. They were so minor they refused to accept how much pain I had nor would they perform an x-ray. For years they refused until one day they relented, just to shut me up. Too damned late then and being proven right didn’t help at all.

Is it irony to acknowledge that in the beginning I was young and fit? Is it irony to say that because I went to the gym regularly, not only for fitness but as a stress release, that I damaged my body by doing too much exercise?  Is it irony to now say that my condition is age related? Are there any more excuses they can think up?

I believed, for one brief interlude, that being diagnosed with Lyme disease might answer all the questions, and eventually see me well. Now, since Lyme disease does not exist in Australia, (so say the powers that be), and my doctor, who specialised in infectious diseases, is actually registered only as a General Practitioner. He made a video announcing his treatment of his Lyme disease patients which caught the eyes of the Medical Association. Well, now he is restricted (banned) from treating anyone diagnosed with Lyme disease. They must be referred to someone else for treatment. Excuse me, treatment? How can they do that if they deny it exists in Australia? How much irony can one body take?

#Today

image from http://www.josephine wallart.co.uk

In one sense it doesn’t matter whether it is irony or not. No longer can the facts be argued. But what can never be ignored is the fact that they now say there is nothing they can do except load me with pain killers which rob me of the ability to think or act as the person I really am.

This morning I had reached the end of the road. At the moment of waking, a screaming throughout my body, of the pain of lying still, of having the chain mail weight of a light sheet and blanket over me was too much. Having to plead with my husband to PULL me quickly upright instead of gently brought an anguished scream from me.  Enough I thought, I’ve had enough.

But the end was too far away. If I didn’t want to soil myself I had to reach the bathroom. No dignity here.  Each painful slide of a foot forward speared pain up through every part of my body and into my brain. Two damned, bloody steps up that I loathe more deeply each day and then fifty agonising steps to the bathroom later, there is more pain. By the time I reach the vanity basin to wash my hands, I would breathe a sigh of relief, but I tried that once and it hurts too much. So I just think it instead.

The retracing of my journey is the same except going down those two damned stairs becomes a farce. ‘Enough’ my mind screams at me. ‘Enough’ I say! I would cry, but self-pity is useless and apart from that, crying is too damned painful. More irony!

I want an end to this. I want to be able to walk again, just like I used to. I want to be able to laugh and smile and not know that it is just a cover for how I really feel. I want to not feel that I’m an ingrate for complaining when so many are worse off than I.  I have too much to be grateful for.

I have a husband I love more than I would have believed possible. I have two wonderful children who have become incredible adults. I have a roof over my head. I have a beautiful ocean to see from my deck (if I can get there) and I have my beautiful orchids which are flowering again. I also have ‘my’ owl who visits me even here. I have too many things to be grateful for and no right to talk about giving up. I am reminded daily of how many wonderful things I have in my life to be grateful for. I have a journal I complete daily to remind me, if I should forget. I am grateful.

Today, I have had enough. Today this is too much to handle. Today I want an end to this. Today I want an end – not in some unknown future but now. Now. Today.

In the event that anyone needs an explanation; the beautiful pictures from Josephine Wall Art are to symbolise that I recognise that even in the midst of a shitty and awful day, I know that beauty and Spirit exists. It is there to help me to grasp that reality and find an even footing to go forward with. I hope it may help some of you also.

Today is almost over and tomorrow, my new today will be better, if only because I have coping mechanisms in place to haul me out of those depths before I drown. This is my fervent hope.

There are those who will understand my words, inexpertly written as they are, yet this is not for them alone. It is for everyone who decides to read it.

To those I say:

Blessings always,  Susan x

© Susan Jamieson 2014

Read Full Post »

Just One Day.….

Just One Day

image from quotes-lover.com

Just One Day… there’s been a theme running through my mind all day. In fact it’s a recurring theme. I wonder what life would be like if…

Just One Day:- I could wake up, feeling great, stretch languorously and get out of bed and hop into a nice hot shower. Dress and go make breakfast for my husband and I.

Just One Day…..

Just One Day:- I wonder what it would be like to  jump out of bed, smiling at a day already planned. A leisurely breakfast with my husband before hopping into the car and setting off for town. A little shopping and then meeting a few girlfriends for lunch. Sitting and chatting and swapping stories of our day and plans for tomorrow. What would that be like, just one day?

Just One Day.

Just One Day

image from andyouaremysunshine.tumblr.com

Just One Day:- What would it be like if I could get out of bed, pull on my exercise gear, joggers and hop into the car and go to the gym for an hour, or, if I preferred, just go for a run along the beach with my husband. We could just walk leisurely along, holding hands and talk about… what we are planning for the future. Our new home, our new life, happiness and excitement. Perhaps we could plan a holiday, a flight to somewhere? What would it be like, just one day?

Just One Day..

Just One Day

image from quotepixel.com

Just One day:- What would it be like to wake up and smile, not holding my breath waiting for the pain to let go just enough for me to breathe properly, then getting out of bed, without needing to be helped upright and held steady until I won’t fall over.  Walk to the bathroom alone, without needing to be supported each step of the way, before being helped back to bed for heat packs to be brought to ease the pain, and wondering if this will ever stop.

Just One Day….

Just One Day

image from quotesoflife.info

Just One day:- What would it be like to have a leisurely breakfast and not handfuls of pills to swallow which need a set regimen to take them.  No running out the door to see girlfriends, they vanished long ago when it became impossible to rely on my presence. Nor an hour at the gym, that’s long gone as the ‘issues’ became greater. Neither a walk along the beach because I wouldn’t make it to the sand, without thoughts of a walk through the sand.

Just One Day…..

Just One Day

image from twicsy.com

Just One Day:- I finally find I can emotionally accept that this is me in the present moment, I accept who I am and where I am and what is currently happening to me and peace begins to rise up in me. Fighting against this reality can only make me more frustrated, while the reality that I am alive, within this moment can make me stronger than I knew, see the greatness of what is and the love in all things.

Just One Day:- I accept this pain, in so far as it is my present reality, but not my only reality. It will not define who and what I am. Love for me is as bountiful as my love for others. I am not diminished if that love is not returned, but if it is then I am richer than I knew.

Just One Day:-

Just One Day

image from misskryan.edublogs.org

~

I began this day thinking of this film about C.S.Lewis which of course meant that I thought of Sir Anthony Hopkins. Here is a man, who has in life, taken all life has to offer without apology, making no concessions to anyone, and accepting the consequences as they came.

This is what I have come to understand when I thought about what might happen if I had “Just One Day“……………..

~

  “Pain is a pesky part of being human, I’ve learned it feels like a stab wound to the heart, something I wish we could all do without, in our lives here. Pain is a sudden hurt that can’t be escaped. But then I have also learned that because of pain, I can feel the beauty, tenderness, and freedom of healing. Pain feels like a fast stab wound to the heart. But then healing feels like the wind against your face when you are spreading your wings and flying through the air! We may not have wings growing out of our backs, but healing is the closest thing that will give us that wind against our faces.” ― C. JoyBell C.

~

Life goes on, with or without me. I have no intention of being left behind, nor of being remembered because I was in pain… I am me, a spirit in my own right and my own beauty. I would not change it if I could because I am growing through this and becoming…. the best that I can be.

This is me, it might also be you. We may walk together, unknown or known, but sharing the same light. It is a light in the darkness we all share at times… but the night always passes.  Please share this post, who knows who out there might just be wishing, for just one day…

~

“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.” ― Lao Tzu

~

If this connects with one person, if this resonated within one heart, lightens one spirit, then take this gift today, for each and every day.

~

Blessings to all,  Susan x

© Susan Jamieson 2013

Read Full Post »

Bipolar For Life

Memoirs of a Wounded Healer

thoughts alone

Just some thoughts along the journey back home

A Window Of Wisdom

Whispers from spirit heard with your heart

Sacred Ascension - Key of Life - Secrets of the Universe

Discover your True Self through the Vibrational Messages from Behind the Veil

shamanictracking

Opening doors to enhanced life experiences by uncovering the unseen

Kindness Blog

Kindness Images, Videos, True Life Stories, Quotes, Personal Reflections and Meditations.

Witch Reads

magical book reviews

Kit Perriman

The Hill - A Historical Novel About Witches

weatheredwiseman

A Weathered Wise Man's Look At Life

Fireside Witch

A personal journey with the Ancients in a World of Ritual, with the Intent to Heal.

Mystical Magical Herbs

by friends who love herbs and want to share what they know...

Sunhealers

Nurture the Body, Free your Soul

aisha north

Channelings and words of inspiration

Dr. Bairavee Balasubramaniam PhD: The Sky Priestess

Astrologer, Doctor of Political Science, Spiritualist and Public Speaker

Circle of the PussyWillows

A Wiccan Circle Based on Green and White Magick

%d bloggers like this: