image from http://www.josephinewallart.co.uk
“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.
image from http://www.pcuseful.com Train track leading where?
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.
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.
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.
image from http://www.ehow.com How can I help you?
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.
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.
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”.
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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