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Posts Tagged ‘Chronic Fatigue’

“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.

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“There are as many worlds as there are kinds of days, and as an opal changes its colors and its fire to match the nature of a day, so do I.”
― John Steinbeck

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Despite the fact that I was relieved I wouldn’t be going on further tours with Cherylane, I still felt let down over how things had turned out. I spent quite some time wondering if I was, in fact, totally wrong about that I should be doing with myself.  In short, I began to wonder if I was meant to be following ‘this’ spiritual path. It didn’t help when I read about her doing her tours and going on a TV show, which she won. I couldn’t help but think of the Jekyll and Hyde and wondered what her adoring fans would think if they knew the real person. But being a bitch doesn’t change what she did and I didn’t want that as part of who I was so I let it ride.

Whether it was simply knowing I didn’t have to go on the road again, or doubting what I should be doing I found myself in a growing amount of pain. In fact it seemed to become substantially worse overnight, each night!  The best the doctors could come up with was… the usual STRESS! Then finally it was decided I had Chronic Fatigue, a name,  but totally unhelpful diagnosis. It appeared that after acknowledging I had CF that I was to ‘learn to live with it’. Rest was all I could do, that and whatever was within my ability to do without causing a flare up. I really love the “live with it” attitude I hear so often. If you’ve got a,b,or c, “accept it”, “learn to live with it” because “it is what it is”.  I must have missed out on the Saint instructions. I’m still struggling to accept the status quo. I feel if I do then I will sink into oblivion.

image from myjustliving.com

Bumping into a friend from my old spiritual circle was a turning point in many ways. I began going to a new circle she was running and the meditations were both soothing and enlightening, Apart from the rampant tiredness which annoyed me when I was meditating, the injury to my neck made it almost impossible to keep my head upright. If I rested my head back on the chair there was always the possibility I would fall asleep.  I was relieved when I was told to stop worrying about it – if I fell asleep I would still benefit from the meditation and Spirit were helping me to heal.  The relief was huge. Guilt over something outside your control can be devastating, especially if you are made to feel you are showing a lack of respect for something outside your control.

I started back with the healing group also and continued my Melchizedek training. It’s difficult to describe the experiences and feelings from the healing and the meditations we did. It felt as though I traveled backwards and forwards in time and space and during the healing, into and through the body. It was mind-blowing to put it mildly. At times I would end the meditations and healings in tears at the incredible things I saw and felt.  Whatever had happened before, I felt I was where I should be. I should add that these experiences occurred when I was giving as well as receiving healing. At least  many of the people I gave healings to said this to me.

There was a continued ‘presence’ of spirit around me. I could sense Dad’s presence by scent and he seemed to be spending more and more time with me. I would hear him calling in my sleep which seemed odd when I knew he had already passed over. Then I realised that each time Dad’s presence was the most strong were the times Mum was having an attack or was ill. Time was passing and I felt an urgency that the one thing I didn’t want to happen was drawing closer.

After my divorce I had eventually remarried. (Some lessons are hard to learn). The honeymoon period hadn’t lasted very long and things had been rocky for a while. Tensions had mounted whilst I was traveling with Cherylane and I had a household of discontent, and it wasn’t solely mine!  I started a small business working from home, healing and card reading which was working out fine. I could limit the clients to how many I knew I could manage so it didn’t overly concern me that it was only slowly growing.  There was a great deal of satisfaction as my skills at healing and accuracy with readings continued to grow. Being at home seemed to ease some of the tensions there, even if they didn’t help my health very much.

I felt that I needed to remain available, but if asked I would have been hard pressed to give anyone an explanation. Meanwhile the pain intensified. I had my gallbladder removed and was disappointed it didn’t help my health improve. It reminded me of my near death experience, well as close to one as I think I’ve had. This happened when my children were both in Primary School. If you’d like to catch up on my near death experience. Just follow the link.

There was an intense feeling of momentous change which left me feeling uncomfortable. I suspected what was coming and desperately wanted to avoid it. So I prayed, for the first time in a very long time, very selfishly, for myself. At least that’s how it felt to me. If  my prayers were answered it was not how I expected, but then they rarely are.

image from embracethechildrennj.webs.com

“Prayer is when you talk to God; meditation is when you listen to God.” ~Author Unknown

Blessings,  Susan xx

Next week – Old Doors Close

© Susan Jamieson 2013

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