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#Advance and Retreat

Image courtesy of flickr.com

 “Not to give up under any circumstances should be the motto of our life: we shall try again and again, and we are bound to succeed. There will be obstacles, but we have to defy them. So do not give up, do not give up! Continue, continue! The goal is ahead of you. If you do not give up, you are bound to reach your destined goal.”
Sri Chinmoy, The Jewels of Happiness: Inspiration and Wisdom to Guide Your Life-Journey

There are times when it feels almost impossible to find out why things happen the way they do. At other times the steps you’ve taken to reach a point can be all too apparent. It doesn’t always mean that either scenario is palatable.

Several months ago I determined that I was going to push myself to my limits – and beyond, in order to help with our move, relocation to Queensland. The aches, the pains, discomfort, at times the agony and tears were expected. Not always palatable but, “I’d signed up for this” so I was aware of the possible consequences. In fact, they weren’t possible but probable consequences of suddenly throwing a body, already reduced to what felt like a meagre existence limping through each day, into what was, beyond mere normalcy when contemplating the workload of packing and unpacking a household.

Since then, and our move to Queensland, there has been more of the same. Yet along with that there was also a greater sense of achievement. Here I was after so many dreary pain filled months, achieving more than I had for such a long time. My decision to make my body work, like a normal body would, in ways it had been unable to without a great deal of pain meant I would have to accept the natural consequences. The achievement, the sense of purpose made the pain and tears and discomfort worthwhile.

As the old saying goes, “I paid in spades.” Yet, to me it was well worth it. I was doing something worthwhile. That sense of achievement long missed was a heady drug which helped me feel a little stronger, a little happier and much more contented as each day passed. Such are the things we measure our successes by.

#Advance and Retreat

image courtesy of howtoraiseyourvibration.blogspot.com

I have yet to find a straight road in life. In fact, I sincerely doubt there is such a thing as a straight road through life. Each road is meant to have its bends, uphill, downhill, roundabouts and the usual missed turns which send you back the way you’ve already been. I believe it’s the way we are meant to learn our lessons. Often not simply learn them but by revisiting them, ensure we really have learnt all there is from that learning experience. Cliché’s abound for this, “Two steps forward, one step back” and “Advance and Retreat” seem the most appropriate right now, and yet, that is what life is all about.

The occasional hiccough, the down day or days when things seemed to pile up and that wonderful forward momentum trickled so slowly by, came along with the rich positives. My ever patient husband was my strength and support to help me through and a very dear friend was always ready to offer sage advice and cheer me up. Just sweeping those dark clouds away helped enormously.

 

So What Happened? Well, Life Happened.

 

I needed one final visit to the “No longer Lyme doctor” to get my Genetic Genie result explained. I decided that after going to all the hassles of getting the wretched thing ordered, completed, sent away and the long wait for the results that I might as well find out what it had to say. Learning about my genetic structure seemed a fair recompense for all the pain and heartache over the past fourteen months. In reality, it seemed ludicrous not to get something valuable from this learning experience I had been given. It was also immensely intriguing. Mind boggling but intriguing.

#Advance and Retreat

image courtesy of http://www.crystalinks.com

Then he beat me to the gratifying punch line. Rather than being able to tell him I would not be returning to see him again he jumped in and said he didn’t want to see me again! Hmpf! It was, in retrospect, an odd way to put it, but the end result was the same. However, before I could say, So long, it’s been good, but”…..I was whisked into the Naturopaths office, deluged with a tonne of information and the adjuration that I needed “X,Y and Z” to correct the enzyme breaks shown in my genetic coding.

Now I’ve been through the hoops a time or two and I know how my body reacts to a great many things, especially dietary and medicinally based items. Several rather stressful episodes in the past few weeks had seen my friendly ulcer begin to act up and the attendant gastric reflux rear its burning head once more. It’s no fun at all feeling as though you have a vat of boiling acid churning inside your stomach and flowing upwards to burst out of your throat like an enraged Mount Etna! Upsetting but it was something I could get back under control with a little rest and meditation.

I did tell the Naturopath all this, explained in great detail since they seem to think you have no idea what you are talking about if you are not graphic. I explained – decisively, that anything not in capsule form would act like a gigantic irritant wreaking havoc on my stomach. I mustn’t have been clear enough. My powers of description must have deserted me since it was apparent she failed to believe me. Did I really care that these things were supposed to help my stomach and ulcer? Not if they were going to feel as if I were dying in the process.

The lowest ebb if my day is early morning at present and I was supposed to toss this vile concoction down my throat into an empty stomach to start the day. I love liquorice, but this vile stuff is not liquorice flavoured at all – it’s a pale imitation, a foil on the very word designed to befuddle and cloud the senses. Feral, foul and disgusting.

One week later and I feel too wretched to get out of bed. My throat is raw, my stomach in turmoil and the thought of a drink, not even food, is palatable. Add to that the almost indescribably migraine… what was I contemplating? This strange thought keeps circling my mind like a shark through bloody waters….”Why?” “Why did I do this to myself when I was beginning to feel so much better?” I have, yet again, paid an obscene price to once again poison myself in the name of getting well.

#Advance and Retreat

image courtesy of academyoffood.blogspot.com

Frustration, pain and anger, not a good mix for a stomach in turmoil. Nothing to show but a return to the nightmare and another email suggesting a garlic cleanse (eight whole cloves of garlic swallowed with water, no food for a day and febrile reaction, followed by a coffee enema). PLEASE.

NO! I’m sorry, but enough is enough. I’ve done everything I was asked to for fourteen months only to learn it was all for nothing – I don’t and never did have Lyme disease. I warned you I couldn’t tolerate this kind of natural “stuff” and what would happen and you didn’t listen, just pedaled your potions. A day in bed contemplating the next step has seen me decide that a polite but firm email is all I need to do. I am retiring from medical experimentation.

I’ve reached my place of clarity. I’ve had my hard-won taste of a return to normalcy. It was painful but it was an achievement of being able to act like everyone else. I’m not ready to take even a small step back to where I’ve been. There will be other ways to “fix” anything which may need fixing but not at the expense of my sanity and health. After all, what is health? It’s being able to live, laugh, move, do the normal things of life without pain and agony. It’s feeling loved and being loved and being able to love life again. Slowly but surely I am reaching that beautiful place and I will get there, without needing to pour copious amounts of money into someone’s pocket for pills and potions.

#Advance and Retreat

image courtesy of healthsaints.com

“A quitter never wins-and-a winner never quits.”
Napoleon Hill, Think and Grow Rich

Welcome back health and harmony.

 

I will Advance only and Retreat no more from this battle to be all I can be.

 

Blessings, Susan ♥

© Susan Jamieson July 2014

 

Postscript:
I admire and applaud all those who work in a health or alternate health capacity. What works for one may not for another and vice versa. I have recorded my feelings and responses to what I have been through and whilst they are true for me they may not be for another. I pray for good health for all people, including me. 🙂

 

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“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

Related Articles

We The People

Imperfectly Perfect

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#Imperfectly perfect

Heavy orchid spray                      I love my orchids

Imperfectly Perfect
“Excellence is the Result of Caring more than others think is Wise, Risking more than others think is Safe, Dreaming more than others think is Practical, and Expecting more than others think is Possible.”
Ronnie Oldham
 ~

Doing anything half-heartedly gains you very little except dissatisfaction with life, and the reason is very simple; it is because you are settling for second best. There are hundreds, if not thousands of quotations, some by the rich and famous and some who would like to be. What they all have in common is to tell you what you should do to reach the top, whatever the top happens to be for you.

It seems difficult for me to acknowledge that today is Friday, that the ‘end’ of the week is almost here. When I sat down to type I suddenly wondered where the week had flown and what I had achieved during that time to make it appear to have vanished. An entire five days vanished almost without me being aware of it.

#Imperfectly Perfect

image from anndr.deviantart.com                 In your imagination anything is possible

Of course I could make excuses and blame something or nothing for the ‘loss of time’, yet the sad fact is, I don’t have a good reason. What I think may be of even more concern, is the fact that I don’t feel that I’m on my own with this. Would you say I was being “Mindful” or that I was “Being present” in everything I had done?

Strangely enough the answer is yes. I complete my Gratitude Journal every morning, refresh my Affirmations and send my healing to those I know and those I don’t. I complete my Life Change 90 program each day, all reminders of times passing and making the best use of it for myself and others. And of course, I write. When I have completed my morning ritual I think about writing and I write, whatever it is that has made an impact on me or whatever ‘comes’ to me.

#Imperfectly Perfect

image from aniisah.wordpress.com –   Time where does it go?

Today, time was concerning me. The fact that I felt I was losing time… great chunks of time which I couldn’t really account for. Was my mind taking a siesta? Were my subconscious busy planning things for me to do in the future? I’m not sure and that lack of surety has made me feel uncomfortable. Have I been losing time that I haven’t been aware of? That is a truly scary thought.

Thoughts of Alzheimer’s, blackouts, seizures, or other malady which have no name, just visceral fears, ran amok through my mind. The fear of losing one’s faculties is a great one since there is usually little chance of coming back from such a problem. “Accepting what is”, as I have read previously, would simply not be something I could comfortably acquiesce to.

#Imperfectly Perfect

image from http://www.josephinewallart.co.uk       Bubbles of time floating away

I have to add this little incident which occurred moments ago. My husband told me he had a rather unpleasant headache, something which is unusual for him. However he is off in his little den with computer, doing heaven only knows what.  Since there was silence in the house I called out to him – and since he is concerned about my welfare he came to see that I was alright. Checking on his ‘timetable’ to the days close I asked him if he had taken his little blue headache tablets. He replied in the negative. He had become caught up in whatever he was doing and his headache was still thumping away, something I can validate only too easily. In a mock stern voice I said, “Well, you’d better take some immediately, and I mean that with the utmost infection!”  Infection? The moment the word escaped my lips I knew it was wrong and he fell into gales of laughter. Charming! It is said that laughter is the best medicine, but take it from one who had some dreadful headaches, laughing with a headache is to be avoided. At least for me it is.

#Imperfectly Perfect

Pre Lyme meds

Taking the humour from the situation, I ask myself where my mind was. What was I thinking about? Was I thinking? Was I being courteous, mindful and present with my husband? I was thinking about him, his headache, and his little pills and hoping he would be finished soon, so he could rest. So what caused the slip?

Truthfully, it is a little unnerving, a little frightening, and preys on my mind. I can blame ill-health, the brain fog, the medication, but is it? Is that the cause of these slip ups and loss of time? I believe there is nothing serious wrong, but it remains an unanswered question.

I question whether I have the right diagnosis since I feel no better after nine months of treatment than before, in fact I feel worse, much worse. New horrors are affecting my mind, my stability, feeling as though my spine will fall apart like a domino stack at any moment, cracks and creaks and severe muscle and joint aches. All these should surely be getting better by now – or at least some of them?

#Imperfectly Perfect

image from gardeningwithconfidence.com     Because beauty hides the pain

Today I looked at some photos taken just two years ago, just after we became engaged. Happy days! I have some photos taken just a couple of weeks before my Lyme diagnosis and all the medication I began taking. In both instances I looked happy, full of life and energy, and slim and smart. I know people say being slim is not a benchmark for how your life is and “If you’re fat, you’re fat – accept it”.  No way! Not this little black duck. If I had been overweight previously I could say it was a fair comment. The only difference is the medication and my worsening physical state.

So I’m left with a conundrum and many questions. Perhaps that is the reason for the slip. I hope if any of my ‘fellow Lyme sufferers” or the “Fibromites”,  or fellow bloggers I have come to know, have any insights, suggestions, or anything to calm overwrought nerves, I would be more than simply grateful. In fact, if anyone has any words of advice to offer I would listen since I know that solutions come from many strange and otherwise discounted places.

#Imperfectly Perfect

Orchids, always Perfect

I know I am “Imperfectly Perfect. I might also be “Perfectly Imperfect” and that is how it should be. I am who and what I am. I care, for the people I have come to know, their hopes, their dreams, their problems and hurts. You, my readers, have become dear friends and I trust my dear friends to tell me the truth, their truth as they see it. From there it is my responsibility to find my truth.

That, to me is what a community is all about. It is, I hope, what our WordPress community has become. I have been welcomed, in my idiosyncrasies and that is a great gift, one I willingly reciprocate because friendship is a great gift.

I can live with “Imperfectly Perfect” since I accept I am a “work in progress. We all are.

#Imperfectly Perfect

My Dancing Lady Orchid.

“When science discovers the center of the universe, a lot of people will be disappointed to find they are not it.”  ~Bernard Baily

When the world seems full of imperfections, and answers are hard to find, there is a perfection in Orchids which soothes my heart, my mind and my soul.

Blessings,  Susan x

© Susan Jamieson 2014

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#My Husband, # My Lover, # My Friend

Ray and I on our wedding day May 11, 2011

“This is what our love is––a sacred pattern of unbroken unity sewn flawlessly invisible inside all other images, thoughts, smells, and sounds.”   Aberjhani, The River of Winged Dreams
My Husband, My Lover, My Friend

It’s been a rough week here and although I’ve tried to play it down, inside my head and in my posts, there have been times when the thought of simply ‘giving up’ wasn’t far away.  It’s very difficult to remain positive when you wake up and the moment of consciousness brings the awful knowledge that your entire body is screaming in agony.

It’s becoming a real nightmare, a waking nightmare and this morning was the worst to date. Let me explain, although it’s really hard for me to write this. I cannot move my legs, body, head or shoulders. I am fortunate that my hands and lower arms appear to be okay. I wake up feeling as though I’m in a roasting oven, on well done!  I cannot push the covers off and I cannot get out of bed, (I can’t move).

#My Husband, # My Lover, # My Friend

image from autobio-blogs.plazilla.com

I’ve tried everything I can think of to get out of bed without waking my husband, especially as sometimes I wake really early and I’m ruining his rest. He needs it, he has to look after someone who is cranky because she can’t do the things she has previously done alone and I’m not in the right head space to “give in gracefully” and acknowledge that for the moment, this has to be my reality.

#My Huasband, # My Lover,#  My Friend

image from http://www.123rf.com Is this what is coming?

So let’s go back to this morning. I had a magnificent sleep, six hours of deep sleep. It’s a shame it was drug enhanced but I can’t fight that any longer either. But, I heard Ray get up and that was enough to wake me.  It was a world of hurt and I had no idea what to do. My entire body was locked in this agonising position and I had to move. I simply had to.

From a mental angle it is full on despair, a waking nightmare I cannot banish. Giving in is against my entire world view. I have always stood my ground, but that has become a joke since I cannot stand. Not first thing in the morning.

The first challenge is getting upright and Ray has to hold my hands and when I say “Pull” he has to pull me upright quickly. This morning I screamed as he did this.  (Going slowly is more painful.) Ray has to slowly pull each leg around until I can reach the floor and then once again, pull me to my feet. He has to make sure I don’t fall backward or forwards or I’ll be on the floor. I’ve mentioned the ‘damned stairs’ before but this morning they almost defeated me. But he wouldn’t let go, nor would he give in and we painfully made our way along the corridor.

#My Husband, #My Lover, #My Friend

image from owlsandorchids.com       Is this all that’s left?

It has brought home the simple dignity chronically ill people suffer which is taken by others as something they just have to get used to. I wonder if, in the same position, they would find it so easy or welcome! Well, we made the journey, back to bed and sitting back brought another stifled scream. (I have some pride left). It was not going to be an easy day. I swore I wouldn’t take the tablets but I was afraid, seriously afraid I might have to call the ambulance.  Maybe it’s the meds but that’s tantamount to throwing in the towel and I’d rather the unthinkable than that.

So, doped up and basically incoherent I remained in a land somewhere between reality and who knows? I do know that after Ray had left I felt someone sitting down and then a cuddling into my legs, but that’s another story.

We decided on a bath, detoxing again, but with added special things Ray thought up. He helped me to the main bathroom, (when we build I’m having a bath in the en suite!) and the most beautiful sight met my eyes. My special bath salts, lavender-scented had been liberally placed in the bath, extra Epsom salts, my coconut body wash, coconut scented body cream, candles, my bath pillow and my iPod. I could have cried. It was exquisite – and I forget to get a photo so this will have to do…

How can something so wonderful be so painful? Getting in and lying back caused another loud groan, but I wasn’t going to let it stop me. (Note to self – larger bath needed in our en suite). It was hot, as it needed to be and as I felt the warmth slowly seeping into my body, I felt a wonderful feeling enveloping me. I got my iPod and some meditation music and I was left in peaceful silence.

I came back to myself as the water lost its heat but over an hour had passed and I was a wrinkled prune – almost. Helped out and dried off and then the final surprise, the beautiful coconut butter lotion… He carefully and slowly rubbed it in from my toes to my neck and down my back. I had the most incredible massage of my back. His magical fingers caressed the painful knots and tender spots and relaxed the rest of my back. I was covered from head to toe with lotion and I felt amazing. Every muscle had turned to jelly.

Helping me dress and back upstairs we had a beautiful cup of tea.

I realised how lucky I was. I found in one inexplicable gift from the Universe, my soul mate who is my husband, my lover and my best friend. The pain notwithstanding, I realise I’m so darned lucky. To be loved and accepted by such a wonderful man, someone who not only stands by me, but helps me through my nightmare is a rare blessing. I don’t make it easy on him at times and my guilt becomes another torment. I feel stuck in this limbo, yet supported by a magical earth angel.

What more can I say? Love is beautiful and found in unexpected place and at unusual times. Enjoy it anytime you can.

#My Husband, #My Lover, #My Friend

image from 2guysphoto.wordpress.com

I feel my love flowing to all my friends out here, and to all the people everywhere. Love will eventually change our world. It is too great to ignore forever.

Blessings and love to all.

Susan x

© Susan Jamieson  2014

~

For the Love of My Life and for the Love of Your Lives, whoever they may be.

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#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

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Through the Looking Glass

image from gamesfortrainers.blogspot.com

“Every ceiling, when reached, becomes a floor, upon which one walks as a matter of course and prescriptive right.”    Aldous Huxley

~

A couple of weeks ago I told you about the planned trip to Mount Tambourine so we could have a “time out” to use as a forward planning session for next year. You can read about it here.

Initially I wasn’t a whole-hearted supporter of the planning session as I felt tired and still unwell from the Lyme medication and pressured by the proximity to Christmas. In fact, both issues were learning exercises for me. Being ill is not a natural state for anyone to be in and I’m no different to anyone else. I fight it, which is counterproductive. By this I don’t mean that if you are ill you, or I, should simply lie down and give in to it. Definitely not! But fighting an illness is not helpful. Understanding it and then making the most of your time and resources, is the better way to manage it. Fighting it just exhausts you and leaves you open to many other problems because of the exhaustion.

Similarly, letting the fact that Christmas was so close unsettle me, to the extent that I felt overwhelmed, was a fruitless exercise. In reality, when I had time to look at what I had already done and what was remaining, it allowed me to realise that I was as ready as I needed to be before the big day. I allowed my struggle with ‘brain fog’ to start running a destructive program in my mind which could have ruined Christmas. Fortunately my “time out” sorted through these issues.

Through the Looking Glass

Outlook from Tambourine over the mountain

More than that, after I had my shower and dinner, settled in and allowed myself to unwind, it in itself was an enormous gift. I found I was ready and able to focus on planning for next year. Yes, next year which is now only twenty-four hours away, and as such the reason I felt I should finish “Through the Looking Glass.”

I believe it was an auspicious start to the event as it was the night of the full moon. You may have already gathered that I love the full moon and from the top of the mountain it was interesting. Even with the cloud cover the views were amazing.

We had a table brought up to the room so we could spread out our writing material, and set to work with the check list of questions from the Life Change 90 Program. We each had our own monthly and yearly review sheets which we filled in alone and as an exercise discussed later. It was enlightening to see where we were completely in sync with each other and the small areas where we had a slightly different viewpoint. It isn’t necessary to do this but it was a good exercise from our perspective since I’m the director of Life Change 90.

Through the Looking Glass

The review in Progress

It was also good to see where we were both on the same track; most of the ‘differences’ were in reality, terminology. Which brought home the importance of making sure you and your partner really listen to each other and understand what each other are really saying, not what we think they are saying. If that rings a bell, it’s because we use the same ‘formula’ with our children when we want to make sure they are really listening to us and following our requests, at least when they are small enough to pay attention!

Obviously, our reviews were slightly different as my focus was tilted towards my perceptions of how my illness affects what I do, Ray and us as a couple. Ray’s was naturally tilted towards his viewpoint as the person who carries a larger share of the daily activities since I am unwell a lot of the time and the changes that entails. He also focused on his activities and us as a couple.

Through the Looking  Glass

image from projectavalon.net Everyone sees things from a different perspective

Our forward planning went into three stages, as individuals for next month, next year and as a couple for the same periods. Then we looked at it from a business perspective.  It sounds onerous but in fact, it was relatively easy. There is a degree of overlap between each which cuts down the planning steps. Once again we worked on individual sheets to begin the process and then began to combine them.

Whilst it was important to schedule the goal setting for the business, it is something which I do at home and therefore it directly affects and impacts on what we, as individuals, are able to do. I am fortunate that Ray is the Chief Blogger at the moment for Life Change 90. (One Chief Blogger at a time is enough, don’t you think?)

Through the looking Glass

image from Life Change 90

One of our major goals is to move in the first quarter of the year, onto our farm somewhere relatively close to here. By it’s very nature it is not something we can have concrete steps for, since there are many things which need to fall into place first, such as my health. I start my new regimen of Lyme medication at the weekend and my response to it will affect some of our plans.

Through the Looking Glass

image from properties.mitula.com.au

Another interruption (or irritant as I call it), is having to visit my Lyme doctor every six weeks. It would have been nice to be told he was changing his routine when I saw him last.  Instead, we found out when the advice he inserted into a Christmas card fell into our laps as soon as we had finished our planning session. Plus my appointment had been moved to 7.30pm and when it is three and a half hours away from home, a late appointment isn’t really what I would prefer. Traveling is not my strong suit. I arrive like a bent pretzel and feel as though the least movement will snap off an offending arm or leg completely. But, this too shall pass.

Through the Looking Glass

image from deltasdazzlingcostumes.com.au –

There is a big family birthday coming up in February, but we need to be flexible until we see how these meds affect me, so we have a mini monthly review planned for mid-January to see how we are going.

I hope you now have an idea of how we went about our review and planning. It is, I feel, important to make the most of the time you have and this way I feel we maximise what is possible.

Make the most of your New Year celebrations; the New Year is almost upon us. Roll in 2014!

Through the Looking Glass

image from blog.grandchancellorhotels.com

“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.”    Edith Lovejoy Pierce

May you reach all your goals in 2014.

Stay safe. Stay well.

Blessings,  Susan x

© Susan Jamieson 2013

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