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Posts Tagged ‘#ME/CFS’

“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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“The purpose of government is to enable the people of a nation to live in safety and happiness. Government exists for the interests of the governed, not for the governors.”
Thomas Jefferson

What a lot of Hokum for We The People.

~~~~~

I had originally decided to do a short blog and call it ‘The Spirit is willing but the flesh is Weak”. Yet the more I thought about it the more I realised it simply was a hoax. Most importantly I was simply fooling myself. It sounds so pathetic to continually say, “It’s been a bad week” or “I’ve had a rough couple of days” or any number of other platitudes.

That’s not to say that they aren’t true, it’s just that I’m tired of using the same statements as if I trot out one after the other when things are… challenging. I’m not sure quite where I am on this sliding spectrum which I use to gauge how well I’m travelling. Truthfully, I’m feeling more than a little sick and tired with being sick and tired and not really knowing if I’m on the right track.

For so long I dragged myself to the doctors and presented the same old symptoms, tiredness, aches in joints and muscles, my motivation slowly drained away as it became more and more difficult to do things. I’m a perfectionist. I’m also a control freak. I like things to be neat and tidy. I can find nothing wrong with being able to tell anyone exactly where to go to find anything they need in my home. At least I could do that a couple of years ago.

There are my detractors who accused me of OCD, but heck, at least I didn’t need to upend my home to locate a letter I need. I revel in my individuality and I don’t expect anyone else to follow suit – each to his own.

#What a lot of Hokum

image from frommylivingroom.blogspot.com                                      Everything in it’s pace and a place for everything.

Then I was told about Lyme disease. It seemed to fit so many of the anomalies in the symptoms I had. The medication protocols are – unpleasant. If Fibromyalgia causes Brain fog then Lyme – its co-infections and the medication to ‘treat’ it definitely increases it exponentially. But I’m no quitter. I’ve gone through the protocols, dragged myself in ever decreasing circles of confusion and despair trying to determine if I’m simply grasping at straws. And I’m still not finished.

I’ve blogged about it because I’ve struggled to find support groups or people who are willing to share information. How odd. Here is a disease the AMA refuse to accept is in Australia, penalise doctors who treat it and we cannot find anyone to give us recommendations to people who are helping the ‘sufferers’. Those who find these people, usually friends, or friends or friends, keep that information to themselves. Why? Is getting well to be a hoarded treasure? Bygone days of the privileged living and the disadvantaged fading away unnoticed.

#What a lot of Hokum

image from alternews.com –      Where did the floor come from?

I’m not simply tired, I’m exhausted. My arms scream at me in pain for typing, but this is my only outside contact. It’s lonely not being able to see or speak with people. One more day of crawling up the hallway is making me shake uncontrollably. Is this Lyme disease, Bartonella or Babesiosis or some other confounded co-infection I’ve yet to be advised of; or is it Fibromyalgia, ME/CFS or one of its familiars?

I was feeling blah this morning. I had several appointments and I’d had a rough night. In fact I crawled up to the bathroom and cried for about an hour. I’m not giving in, but where the hell do I go?  How do I persuade my GP to look at my symptoms differently – not simply hand out stronger pain meds that leave me FOGGY!!!

To be able to think is such a gift. To know you are making sense and perhaps helping someone who needs to read this… that is my impetus for continuing. I have no answers, just a zillion questions. I want answers because I feel the medical establishment owe us that much – and then decent treatment. I have a right to a quality of life that is good enough to let me do what I’d like without crippling me. There is no need for it. If the damned doctors and insurance companies had done their due diligence when I had my accident, my simple accident, I wouldn’t be in this predicament now. I truly believe so. I wish I could sue the bejaysus out of them.

For the first time today, I ‘listened’ to someone who had always presented a positive push for the treatments they were given, the illness that accompanied them and was able to do so many physical activities I dream of doing’. Today I listened to them bemoaning their shuffling gait to reach the beach, crying because of the brain fog, the inability to raise your head from wherever it lays, and not be able to DO anything.  I admire this person, but here they are, for the first time in my space.

I want to offer advice but I am unable since no-one shared advice with me, I have none to offer except to say, I understand, I am there still, drowning in this misery but determined not to let it win.

#What a lot of Hokum

image from http://www.bannerhealth.com                                   I’m right here, You are not Alone!

I am going to search for these mysterious support forums and try to find out if these diseases have the same symptoms or not and what works for them. I have a few answers from dear people today. Yoga terrifies me because the pain is well established but I’ll try. I may not have  an answer, but by heavens, I will control my environment as much as I can so I can enjoy, to the fullest extent, the life I have been handed. I will also pass on any information I uncover – as a reference only, to be talked over with your doctors so that perhaps, in the fullness of time, we can beat these blasted torturous diseases. Such is my hope. Such is my prayer for all of us.

#What a lot of Hokum

image from childrensbookshop.circlesoft.net         Here come the answers!

As human beings, as Spirits having a human existence we search for answers. This is a prime directive so that we can learn. There is “a strange new world” out there, “new life and new civilisations” and, even more important, “The Truth is Out There”.

#What a lot of Hokum

image from aliens.wikia.com

What more could we ask for?  Who was right, Spock or Kirk?  Does “The good of the many outweigh the good of the few” or Does “The good of the one outweigh the good of the many?

We all deserve a better future.

Blessings, Susan x

© Susan Jamieson 2014

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