• Name: • Age: (began being very sick at age35) • My address is: • My postal address is: [same as above] • You can contact me on: • I want my story to be public (but please withheld name and address unless other wise advised.

Diary Exerts from 2011 until 2016. Does not include the time from 2008 to 2011 when things began.

The following are exerts from my diary over the past 6 years. However the journey began several years prior to this date. I always thought i would be get better and never thought to or had time to write about the journey. These exerts depict only a small piece of the journey, but never-the-less I hope they give you the sense of the journey. The pieces in italics I have only added when putting this together for this submission.

2/1/2011 (at the time writing this, it had been 1 year since i could not work and my health was deteriorating)

This is a challenging time, and I feel the need to write about it- otherwise it will swallow me up. I have had a virus thing in my chest for over a month now- tore the muscles in my chest from coughing and up and till 2 nights ago, could only sleep sitting up due to the mucus and airways blocking up- very distressing, very sleep starved- basically waking up every 1 ½ - 2 hours due to airway closing up.

Coughed this morning and heard a big crack in my ribs- so painful, almost dropped me to the ground. Have strapped my ribs and taken 2 panadine forte. I am so close to committing suicide. I don’t know how long i can stand this. I am sick of people saying I know how you feel – i had a broken rib once, i had that virus etc etc but did they have a whole year of pain, did they have ongoing fatigue, aching joints that debilitated them, had they lost their career, partner, life as they know it, for ever?? Or the foreseeable future??

I just want to end it. I just want to get off the merry go round or should i say the ride of doom. I try to be accepting, to get on with things, to not bother people with how i am feeling. I want to say i want to kill myself- but i am not saying it because i want attention, i am saying it because i have had enough. I really want to do this. I really have nothing that is driving me to fight things this time-i have lost all hope, there is nothing that i want to achieve or do, even if i did, my body is in too much pain and my mind is too foggy to be able to do it anyway. I can’t even do exercise at the moment because my body is too sore. I don’t want to say it to people because i don’t want them to feel helpless, to feel inadequate. As far as i know there is nothing they can do to help. I can’t even garden, something that takes my mind off things, due to re-tearing my ribs. I think about people in concentration camps and the difference between those that survived and those that died- it is reported that the difference is mental; positiveness, future hope and so forth. I find i am lacking in all of these.

I know it is essential that i find my way through this and gain a perspective on my life that will assist me.

It is interesting the stereo typical response to my situation.

1. Oh i’ve had that- i know how you feel 2. You look so well, must be nothing wrong with you. 3. I ’ve got the answer for you- Your in this box- all you have to do is... exercise, have a vegie patch, take vit C, pull yourself together 4. My life is too busy to have time for you. 5. No concept what so ever... just get on with things, I’ve got worse problems than you!!

Deep Brain Stimulation- looks very interesting to look into this for both pain control and depression. I don’t want to live like this anymore! What is “this”. Well the exhausting monitoring and controlling of my moods and their impact on me, and managing pain. Surely there is a better way to live!

( I looked into this but could not do this because I did not have the money to cover treatment)

I have used diet, exercise, being in nature, counselling, psychiatry, vitamins, mental control, past life therapy, medication, sleeping, gentle surrounds, balance between being around people and having space to myself, reading lots of self help books and actioning them, visualisation, meditation, music, sound therapy, light therapy, reiki, acupuncture, running away, facing myself, taking responsibility for myself, strict diets, affirmations, many medical modalities(physio, oesteo, chiro, myo etc) crystal healing, earth healing, alcohol, change of work! And on it goes.

21/1/11

Time shifts as only time does; ephemeral.

Nothing is as it seems, blink and things change.

I see this woman walking the journey of life, her ride is bumpy. She finds her way is directed by very distinct junctions in the path. At times the path even drops out from under her and time stands still as she renavigates her way. Time stands still as she must uncover who she is and where she must go.

At this time she is held aloft by time itself. No forward momentum, no returning, no trail lies in her way. She must stand still and negotiate with time. Breathe gently and carefully. She is suspended in time, for it is only in this state will she uncover who she is, or more correctly, uncover another part of herself that has lain dormant, that part that has surrendered to the more dominant part of herself.

Her body defies her. She must learn to surrender to this process; to the pain and to the fatigue that wrings her soul senseless. She must learn that it is only in this surrendering that her other self will reveal itself to her and the rest of the world. In all her angst, in this frustration it will do her no good, no good to fight this state. For only when she has accepted will this change come about.

To teach oneself to submit to the journey is not an easy task.

This woman was like many that take this present journey. She was reasonably successful, active, self actualising, career/duty orientated, delicately balancing all the parts that are involved in engaging it all.

When did her path change, when did it start to run out, when did the track simply vanish?

She would say she really didn’t know, but her inner knowing won’t be that kind to her. Her conscious unconscious would say that perhaps it was inevitable. She had missed the little signs by the road side, missed the big signs in neon lights and even missed the physical tap on the shoulder telling her to listen up or things are gonna change. But where does a story begin, really all stories are just a chapters to the whole big book of life. And all books are simply another one of the volumes in the sequels to eternity.

So she lives her life like nothing she has experienced. She is challenged, she is feeling like she is slowly disappearing. How can she understand, let alone explain to others, let alone deal with the outsiders. She is living in a foreign land, one where few can understand the language. A place that is so alien to the majority that most outsiders cannot even comprehend why one would visit this place. They do not understand that it is not a place to go by choice, that it is a place that takes you rather than a place you would go by your own initiation.

How does this woman cope in this foreign landscape?

1/3/11

I feel so desperate. Went to the physio to get a program- can’t believe how wasted my body is and how quickly i tired – didn’t even do the few exercises completely-less than 10 of each, 3 min on bike was actually 1 1/2min. Slept for 2 hours this afternoon. I just want to cry and cry at the unfairness of it all. At how little i can do- today has been a waste- achieve nothing- well i vacuumed and went to phsysio. Highly emotional, hate being broke- can’t pay my bills, have no cash for 2 weeks- could re- draw but that is just a miserable thing to do- further in debt. The colder temperature has been terrible today just caused my joints and limbs to ache and ache. It depresses me about the winter coming- i want to be in my home but it is too cold and too painful. Ok only allowed a small self sympathy.. I am so foggy today- cannot spell, very difficult to use key board, lost a lot of words today.

8/3/11

Time to write. How to be healthy when you are not well?? So how do i remain mentally well when i live with a mental illness. I feel edgy today. So i am writing. I am tired. I am a bit down, but ok. Life really does challenge me. Just did banking i think that sent me over into edgy. I am so sick of struggling financially. I cannot spend any money!!!!!!! Yet I have so many things to spend it on. The loans, the repairs on the house, even if i do the repairs, i need equipment- even the fridge needs new insulation...... Oh boy this is really challenging financially. I don’t think i have ever been so stretched so beyond my means. I do not want to re-draw because i do not know when i will ever be able to repay it.

God I ask for your help. I pray to you for your guidance and assistance here. Please help me to let go of the stress and to trust in my ability to get myself out of this situation. To trust that you have given me everything that i need to have a wonderful life.

I feel often the need to just stop. To not think, to not do anything, to sit and let the world regain its equilibrium. I have a lot of times like this- no wonder i achieve nothing! I am so busy just surviving, not just on a physical level but on the mental and emotional level – preventing them from swinging out of control into suicide tendencies. Well actually that is not it – but to prevent me checking out- to stop me using methods of finality to stop the pain.

I wish i could handle the pressure, stress, i used to be able to handle just about anything- but now i get jelly head so easily (that is where things wobble and i struggle to keep balance to keep going).. Was the week-end worth it. “It” being now the consequences of my actions- tired, wobbly head, the struggle, out of equilibrium. Ha!

I had to laugh when Nic asked if i new/ had known anyone with suicidal tendencies- I did not say it was me. Yes i struggle with my illness, but it is not “me”. I am more than that. She talked about the life wish and the death wish in a person- i guess they didn’t get to the pain bit which is pretty endless and where you want to stop the pain.. I can go to a pain clinic to deal with the physical pain but where do i go to deal with the head pain.

30/11/11

I feel numb, lighter, out of body type of experience. Boy was I got good! But the knowing is better than not knowing. I was just thinking this morning how I was living in hell at the moment. My life right now is hell on earth. I feel angry that I am caught up in this hell. I don’t know how to get out. It is like a maze with no exit, and every turn is worse than the one before. I just want a win somewhere. No forward motion with my knee, continuing grief with CGU- work cover organisation, Onepath- superannuation payment, relationships going askew, car broke down, bad side effects from medications. Just when i seem to deal with one of them another takes its place! Just got my car back this week, after 6 or so weeks without it. I continue to wonder how to bear the weight of life. I really feel close to breaking.

The last 5 days were another room of hell, I felt so horrible, could hardly move, barely able to make food to eat, it was like carrying the 30kg pack up the steepest hill, after being out for several days, before your rest day or in the groove of the trek. The most difficult place to be in because there is no energy, no motivation to find- there is nothing in the battery, no withdrawal possible from the bank- its empty too. I look forward and wonder how much torture one can bare. How much longer can I endure this? The worse is I don’t know how to get out of here. I’ll confess anything if only you’ll let me go, I tell my torturer. But my cries fall on deaf ears. They don’t want a confession, just to see how much i can endure before I break.

5/1/2013

Well on the 4 January 2013 I finally received the results to my blood tests sent to USA to be tested; Very positive to Lymes disease and co- infections. Hmm in a way although geared towards this being the case I think I really did not believe it would be so. I felt a bit of numbness, and dread I suppose. Its interesting, but although i ‘should’ be pleased to have a diagnosis and now something to treat, I don’t feel this.

I struggled with the response by mum and (sister), i felt such a lack of sensitivity. (friend) was great, quietly supportive.

It is a fairly serious disease. I have a range of emotion. I am daunted by the treatment plan. I am exhausted already. I feel so depleted I am not sure how to get the strength for this next battle. Each day is such a battle. I feel so unsupported, misunderstood. How do you explain the daily grind, the challenge of getting up while experiencing the pain of body and spirit, the heaviness of each cell? I can’t even find the words to explain the painful tension in my body, the frustration and difficulty of head fogginess, forgetfulness, the constantly shifting other types of pain.

I was thinking about the idea introduced to me that people become their illness. I was contemplating how i answer when someone asks me what i do... I came to the conclusion I need to be with lymes, I need to recognise my unwellness, I need it validated i guess, not dismissed. And a way without going into self pity of having this is when people ask me what i do, i can respond by saying I am studying/researching chronic illnesses and the physical, emotional and psychological impact on an individual.

4/2/2013 Monday, 4 February 2013 Well it has been an interesting last month or so. I want to share with you where things are at. You see I feel at this time that I need a little extra support and understanding. To be diagnosed with a chronic disease is an interesting phenomena. I am still yet to understand my reaction. I feel sort of numb, well actually i know i am not happy about this so that is ‘a feeling’ i guess, so perhaps I am not totally numb then.

I feel like i have entered a waiting room and I do not know if i’ll be seen. You know that resigned feeling, combined with not actuall y knowing when you r number will come up and if you can manage the wait. Hmm that really doesn’t explain it. Its interesting how people respond to being told when you have a diagnosis of a chronic illness. Well there is a cure isn’t there!!! You can treat it, right!? Well you just get the treatment and you’ll be right..... Is it the journey of the treatment that disturbs me? Is it the unknown? Is it the isolation and not feeling understood? Who knows?

My second IM injection at 10:30pm on a Tuesday night was a real low point! It hurt like buggery and it felt so lonely, funny feeling that. Driving the short distance home, what felt like the middle of the night on the dark lonely streets of I did not know what to do with this pain, the physical and emotional pain. I yelled, in a tight chested way, kill the buggers. I yelled again even louder “kill the fucking bastards”. I wanted the drugs in me to go after this disease and bring it down, chew it up and anilate it. I imagined pacman bearing down on the bugs, consuming and chomping them into obliteration.

Walking has become interesting. Yesterday I was walking home from getting the paper – I make myself walk, and I was pondering this activity called walking, and i was looking down at my limbs and I was wondering how it could be that i was walking. I was at my maximum pace, yet I was marvelling that if I stopped the slight lean forward that i had iwould no longer be walking!!! It was a fine line between walking and not walking. My limbs were weighed down with heavy cement and it felt like i was trying to move through quicksand, at the same time coming to the end of a 100km walk that finished on a really steep incline. I couldn’t believe that for all intent and purposes I seemed to look like a regular person walking down the street!?

Another fall out of my situation is putting on weight. Now I have a bit of a curvy sort of shape, and well the weight has distributed itself quiet globally. I now have these great big knockers. It is taking some getting used to. Not only has my cup size moved to GFC proportions, but the heaviness is sinking my frame faster than the Greece economy.

10/2/2013 2013 10th February (Sunday)

This morning I have been feeling very down, what a range of negative emotions! I feel so hopeless. I feel very lonely, isolated and feed up with myself. Well i sent a group email out to family/friends/people about Lymes and also asking for support. I received an email from one saying how did I want that support> So that has been rummaging around in my head, trying to figure out how do i want support. I also realise how isolated i really am. But on the other hand I trust no-one and in the same breath i seem to trust so deeply/or maybe instead what it is is I have such an expectation of others...

Hmm i wonder how you forgive yourself things which you have done that are so profoundly life shaping/changing?

I mean one of the things for me is not getting work insurance, actually another is also resigning from work. These two things have really changed my quality of existence. I ignored the clues i was given over these. Maybe that’s what is bugging me- although i was presented with scenarios of life with and without work insurance i still did not get it! How different would things be if I had got work insurance. I would have got more treatment, I would not be wondering how to fund my treatment, i would be more self-sufficient. But I feel stuck. Also because i did not take self responsibility on these things I am needing to ask for help. Or do I also take self responsibility for putting myself in this position and not ask for help- it was my own stupid ignorance that has put me in this position so why should anyone else have to pick up the pieces.

And then I get frustrated because my mind and body are so affected that i find it hard to look after myself. I want to do things to get/earn money but my mind/brain is hopeless now- where am I in this. Who am I. Was I my brain, my physical self- because i no longer seem to have either. who is the core of me? Bill (psychiatrist) talked about the real self and false self. I feel at the moment I don’t even have a self. How can I if it is true that bacteria is drilling into every part of me and taking over.

If I am more than my brain and more then my physical, what is that? What is the more?. Or should I ask who is it? Am i still making myself so busy I am not giving myself the space to find this out?

Today, fatigue, muscular yuckness, period pain, fogginess, mental destructiveness seem to consume me. The future looks bleak. When I am better what is there for me anyway, i have no money, my skills will be so old and useless that I will only be able to get horrible boring work. That is not something to look forward to.....

Will I be so worn down by this I won’t find my way back? Will I be something I don’t admire? I don’t admire; laziness, dumbness, non-achievement. Will I be living the life I always dreaded; stuck in suburbia, no money for anything, alone, boring life. I dread the boring life!

I had wanted the exciting life- my definition being a dynamic life, full of variety and change and interesting people, travel, having an extroverted life with time for introversion.

Oh boy i feel yuck. I feel like my uterus is about to drop out. My limbs are revolting- heavy, achy, an uncomfortable pain, nausea waves, temperature waves, a brain vacantness and voidness. I think i need to stop writing and ......

17/3/2013 17 March 2013

Well day 4 of more herx’ing. A little better then yesterday I guess as i wouldn’t have been able to get on computer, but i still feel lousy. My neck has seized up, can not turn it, feels like i have stakes pierced through both my neck and head. I feel on the verge of vomiting due to the intensity of pain and headache; very nauseas. My face has been twitching, particularly my top lip. I have constant ringing in my ears. I am going to lose my two thumb nails and maybe others. The nail has become unattached to the nail bed. My leg muscles have continued to get so sore. Today they feel like i have run up and down the 1000 steps without exercising for 6 months. My arms are as heavy as lead. Well life continues to be interesting. I have slept for a couple of hours each day as well as sleeping at night. The headaches started about two weeks ago and just continued to increase in intensity till now. At least today the pain relief is working- actually i just worked out that is why i am able to do this- the pain relief has kicked in oh yes and today i have got ulcers in my mouth and a sore throat.

So there are many things i want to say but when i come to writing i forget them all. I think my hot water system has busted over night- no hot water today. Not sure what i will do as barely able to think, let alone manage organising plumbers etc etc.

Lots of incidentals in life at the moment- worrying about dad, what is happening with what about what about getting a heater in, manageing winter, talking to about lymes today- wonder if he ahs it, trying to put new line in clothes line, would like to make a wood shed, new garden bed, lawn needs mowing, cant even vaccume at moment my head and neck too insane, my mouth tastes so fowl oh so revolting. Buble the budgie, needs more attention. The boys – billy and bobby also need more attention, didn’t brush today just to wonky in the head. Cold today gone form oh so hot to very chilly, what happended to autumn almost skipped that. Getting very sleep only 3pm already had one sleep to dya may need another- don’t wnnt to over do things- will probably pay for this with ever increased painful neck and head when pain relief wares off... buy for now..

4/8/2013 2013 4th August

Just Be! Well whatever is going on in me it is still about acceptance. Be in the moment, feel the feeling. Most of the time it is about distraction, ignoring it, rising above It; So maybe today is the time to be. Yes I am tired, i didn’t sleep well, i had really soaking night sweats, my mouth is sore; the mouth orthotics are definitely not comfortable. My neck is sore, i have a constant headache again, the acne on my face and neck are painful, I’m probably premenstrual, I’m detoxing and hungry. The mouth orthotics which i started wearing on Friday and am to wear for the next 3 months, at all times will need to be adjusted. The night time one is not painful but more awkward and distracting. The day time one well, it’ll need some changes, the backs are rubbing into my gums, about where my wisdom teeth were, consequentially getting quiet painful, the right side is higher then the left so that side of my jaw is aching more, my tongue keeps on rubbing and rubbing on the orthotic so it is getting and tired (that’s if a tongue can get tired- well yes of course it can). Perhaps it’s the tiredness and the headaches which are making me feel most lousy.

But then I’m finding it hard to concentrate, my brain wants activity but i feel distracted and find it hard to concentrate. I feel frustrated, i feel useless, that i am not achieving, that my day is empty and i am getting dumber and dumber and less motivated. I should be able to rise against this, this rebellion (no not rebellion but more the exact opposite- shutting down) by my body and mind.

What have i achieved these last few years; where are the goals ticked off, the personal achievements, making the most of this time.

1/3/2014 1 March 2014

If i just sit still, if i can just stay calm, the world will find its even keel. If I don’t move, stop thinking, make no demands then maybe I am still here. It doesn’t happen very often now, this feeling of the world tilting, of my ‘being’ being unhitched. Breath slowly and calmly, do not make any sudden moves. Do not interact with anyone. Usually it is after I have interacted with too many people or the wrong people or.... Perhaps it is this interaction that triggers the erasing of my edges, the edges of ‘ I start to doubt. It’s like I need to stay still to make sure that I find myself again. Stay calm so as not to panic.

There is an inner tsunami. It feels like i will be over run. It feels like I no longer know who I am or I what i know. A panic? I am disconnecting from ... I don’t know who I am, i feel a space between me and my body. Which is me, is my body me or is my mind/spirit me. So maybe the space is between me and my spark, is the spark dying?

Who is right who is wrong. Which decision is right which is wrong. Too many people today. Too many people with too many views. Have my edges been erased and have i been consumed by the edges of others?

2/3/2014 2 March 2014

Well I need to write this thought- I don’t want to forget and yet I don’t want to remember. I understand that the memory is selective that we don’t often remember traumatic events etc. I have only vague memory of these past few years. I almost remember as though it is someone elses story that i am telling, the pain, the anguish, the intolerable moments and more and more and more intolerable moments, in pain, in loneliness. There are many, many words for pain. I did not know this long ago. Now I have felt them, experienced them, lived them. Now I have had to articulate them and discern which are my words and which don’t belong to me, these words to do with pain. And these were only to do with the physical pain. I did not have to tick boxes regarding my mental, emotional and psychological pain. There are so many more words if we count those too. And the pain of loss, even more words. I wonder if there are as many for love as all of this. Or for joy... I have not found them if there are.

I had a funny moment. After writing before, and feeling wrung dry I went it to do the dishes before i could not. I was thinking about my day. Yesterday i did not get the headache/migraine much at all. I got other stuff, but not the headache as so. This headache/migraine had been company with me for weeks now, along with other symptoms- I have been feeling pretty unwell. Anyway i would not have used the words company before, plagued by migraines perhaps but not company. I found that word just now- the funny moment. The headache has been growing today. And i pondered the thought how my day would be without it... well besides more productive, less uncomfortable/ less pain, not so consumed i realised that the thought had crossed my mind that it could be empty with out it... Now what a ridiculous though. But i like to ponder these concepts. Why would i have even had that thought.. well the familiar is a companion of sorts. So my migraine as unfortunate a companion as that it is never the less a companion and without it there is none. I thought about that idea of kidnapper syndrome or whatever that is when a victim becomes sympathetic to the kidnapper and no longer try’s to escape. Without really remembering the exact relationship of this it did a ring a bell of sorts. I mean the head ache that is developing now, so familiar; the ache behind the eyes, the binding and gripping around my temples across my eyes down my jaw around to my chin, the stabbing fish knife up through the back of my head out through forehead and the vice like grip on my teeth and jaws well these are familiar, they stop me in my tracks, they demand my attention, like a child tugging on its mothers dress hem and crying out her name, the wail getting louder and louder. Where would that mother be without it? Where would I be without my migraine?

The haze of pain and tiredness that descends like a curtain at the end of a play, that’s it, show finished for the day. I might get an encore, the curtain may lift, but not likely.

Enough for now....

2 March 2014 The Journey: A silent journey, an unnoticeable journey, an unnoticeable life; not loud, not attention seeking, not of notoriety. Through a maze. Searching for a way through.

This is a story about an individual. It may or may not be true, for truth is not a singular notion, but instead the warp and weft of life interwoven then folded in on itself and then shaken out like a crumb encumbered table cloth... to reveal, well a simple table cloth and nothing more interesting then that.

This story could be about me and the straight forward unfolding of my life, or it could be about feminism, sexism, solitude, lonliness, aloneness, surviving, expectations, learnings, layers, reflection, perceptions, illness, unexpected turns, unexpected friendships, make believe or a simple wandering amongst past/old friend and enemies and battles.

How to make sense of this, what is my focus, How do you tease out the story, the important bits, the almost irrelevant bits. Life is not straight forward, there are always multi layers, plots and sub plots.

For instance I am sitting in my garden having a quiet moment. But I am not. I am simply not quiet on the inside. I feel like on the inside the figure in the painting ‘the scream’ (artist not remembered). I am treading gently today after my internal upheaval yesterday. My skin is only just containing the liquid on the inside. I am trying to honour the thoughts and feelings, the part of me that wants to be heard, that is bubbling away. I am connecting with nature, I am earthing myself, I am naturing myself, I am hoping that by being still I can hear. I really want to hear, but perhaps I won’t hear, I won’t get the message, the point, of this, all of this, life illness, being in the flesh. I was reading, trying to keep my brain functioning, learning. I am out here having an enjoyable time by myself, conquering aloneness, or is that loneliness, or solo time or solitude. I was just reading about the women who back in the 80’s trekked across Australia with camels then wrote the book Tracks. This journey is now being made into a movie.

I would quiet happily do that journey, not to sound egotisical or what ever but that journey would be a pleasure for me; Out in nature, with animals, facing the physical challenge all right up my ally. Now the physical challenge really is not so hard, we are programmed for action (see book by Dr Abraham Khazam0 You don’t have to die from cancer). I have believed for a long time now that it is not the external journey (physical rehab,or climbing everst etc) which is so hard. There are countless books on these type of journeys and they do cover the mental journey that occurs along with this. But I have for a long time now believed it is the internal journey, the inner brain which is the last frontier. We now have science, scanning this internal landscape, to make sense of this environment, but there is still far to go. There are still the treks into this unknown landscape which have yet to be recorded.

The book by (see below) ....being in the concentration camp that looks at the mind (read this book at Mary’s) and what he uncovered of this landscape and was able to map out. Viktor Emil Frankl (26 March 1905 – 2 September 1997)[1][2] was an Austrian neurologist and psychiatrist as well as a Holocaust survivor. Frankl was the founder of logotherapy, which is a form of existential analysis, the "Third Viennese School of Psychotherapy". His best-selling book Man's Search for Meaning (published under a different title in 1959: From Death-Camp to Existentialism, and originally published in 1946 as Trotzdem Ja Zum Leben Sagen: Ein Psychologe erlebt das Konzentrationslager, meaning Nevertheless, Say "Yes" to Life: A Psychologist Experiences the Concentration Camp) chronicles his experiences as a concentration camp inmate, which led him to discover the importance of finding meaning in all forms of existence, even the most brutal ones, and thus, a reason to continue living.

(The shock of capture is one of the most traumatic overwhelming, stupendous, psychological reactions that can happen to an individual. . . . It is the complete and final cutting off of all you've ever known, all you’ve ever dealt with, all that's ever been familiar . . . . 4) the first year or two was like this for me. http://www.airpower.maxwell.af.mil/airchronicles/aureview/1976/may-jun/wagnon.html

I have toiled through many (barren) landscapes of my mind. And I must say they have been tougher then the physical challenges i have ever set myself. They have bought me closer to death then any landscape. And I have clawed my way through, and at times only through dogged persistence survived until the landscape simply gave way to a more traversable slope.

Memories and hope have held no grips to latch onto. And the brilliant sunshine and blackest nights simply merged into grey twilight, With neither a setting nor rising sun to offer a glimmer of colour or possibility of something else/ change/ change in form.

And still I am no closer to uncovering the thread that could hold a story together.

I am tired now. Tired in brain and limb, fatigue in my bones and cells, a numbness and vagueness penetrates, My brain is spent. I have to remind myself to breathe for it is such an effort, i zone out in between writing words. What do you do when mind and limbs won’t work- i count, i count to 9- for while i count i exist.

\

5 March 2014

What a long day. Back from my trip to Melbourne. The drive down was long hard and consumed by the pain in my head. I stopped in Healsville to buy some pain relief. I ended up taking some more about an hour later as none of the intensity had changed. Wow the intensity of pain throughout my head was insane. Went to Dentist, had a clean and check over of what else needs to be done. $400 later and that is with health cover covering some of it I leave with a dentistry plan for the 3 amalgam removal and replacements and 2 more fillings to be done and nearly $2000 bill to cover this. Well i guess that’s not too bad considering i haven’t been to the dentist in about 16 years...

Then it was on to to see what next with the Lyme. Oh boy my head was a throbbin and a bobbin, the pain behind my eyes the tiredness in my body. I could hardly put my words together.

was worried so I then was able to get an appointment for a CT scan on my brain. I think want s to check i have some brains, actually I think there are too many in there, that’s why the pressure is so great, all pushing up against each other.....

2014 August 17

Home. What is a home? It is so good to be back in my little home (bricks and mortar- well timber actually). But I know that this same place that offers me a reflection of myself and nurtures my soul, will become my prison(??) stifling my being. How is that possible? This place has become home through time, repetition, familiarity, memories, being a refuge, through knowing, being a canvas of my life, a gallery of my life, neighbours, and most importantly my garden.

Home is sense of place. For me it is going away and coming back again that provides that view of my self in this place. Home is country, being surrounded with like minded culture.

Disoriented! No it was more than that. Lost? Maybe. Definitely loss of self, loss of knowing who I am, even feeling the loss of my existence as ‘ It was like stepping into someone else’s life. “I was bruised and battered, I was unrecognisable to myself” (from song Philadelphia) These last few months have been difficult. But i find it hard to define in what way. Yes it was hard health wise, being sick and unwell, but then it has been this way for a number of years. Yes Dad has passed on, and this is a very unreal, surreal, sensation. And Mum nearly passed, needing to spend much time in the artificial environment of hospital, in the unequal company of doctors and nurses.

No it was more. It was like I visited other selves. Selves I could have been if things had gone differently.

The external loss feels so great. Loss of the outdoor women i was, loss of dad, loss of..., loss of .... so overwhelming loss of a ‘Me’. Hmm my thoughts in response to this are that i have an opportunity to re build ‘Me’. Which bits are the authentic me, which bits can I choose to adopt as a new ‘Me’, or rebuild, this is what i can ask myself.

October 4 2015 Sunday (3:23am Czech Republic time)

Well I want to put down my thoughts on the trip here. I am at the Hotel Ambro in The Czech Republic. Cannot pronounce the name of the town it is in.

I flew from Brisbane to Sydney on Qantas then on British Airways to London via stopover in Singapore. Again it remained surreal. I had just sat in car for two days driving to queensland and then two days sitting in another chair but this time I was flying, felt like i didn’t leave the country. Then in London picked up and drove to home and it still felt surreal and that i had not left the country. Had 3 days/2 nights in London, pretty difficult – adjusting to jet lag and dealing with symptoms being exasperated.

So I am now in a hotel room at Ambro Hotel in town of Luhacovice in Czech Republic, having arrived in Prague at 10:30pm, getting a pick up and being driven to Luhacovice taking 3 hours or so and now it is 3:40am local time while it is 11:40am in Australia.

The drive was quite revealing. So my main self is feeling that this is all really quite surreal, but never- the-less quite philosophical about things and quite excepting of the situation, not really too attached to any particular emotion about the situation, really I am simply focused on attending to the present moment.

However during the drive which has been in the middle of the night (so not really much to visually see), it did bring up some other insights/ reflections by my other self. Here i was hurtling through the night, often the driver sitting on 140-150kmph (felt very normal), I was feeling awful and sick in my body and so tired with my head lolling about and i all i could think of at one point is how desperate a person must be to travel when already sick to the other side of the world by themselves, completely vulnerable, with symptoms being exasperated that it is almost unbearable. And yes that was the word that kept coming to mind is how ‘desperate’ I am. Here i am about to begin invasive treatment, by myself, already in a desperate health situation in a place where little is english is spoken and likely to get even more unwell and greater intensity of symptoms. But that is what I am, desperate... and I imagine that most other people in Australia with this illness are also desperate. I found out just before i left Victoria my treating doctor in Melbourne has been ordered by the medical board that he is no longer legally able to treat people with Lyme-MSIDS-Borrelia. He saved my life. What will other people do???

2016 December 6 Wednesday

Well i have been back a while now, 14 days, actually today 2 weeks! How life rolls is just so ... crazy, diabolical, unbelievable.

I left Braunwald, Switzerland, Saturday two weeks ago, and took the train to Zurich, it feels like a life- time ago. The next morning I was on the train to Vienna, it was an all day affair, just under 9 hours. Unfortunately I pulled/tore the muscles (right side) in my back lifting (throwing) my very heavy suitcase onto the train, it is still healing.

During my second and last week at Braunwald, I was really struggling. I really had no idea how i was going to find the energy and enough health to pack let alone manage the travelling. As well, I was beside myself with the devastation as to how ill I was. However, on the Friday i got the tri-fecta, Vit C, glutathione and the magic ingredient procain. The difference of 3 hours of magic cursing through your veins was undeniably incredible. For a brief moment or two or three, i understood how people must craze drugs. I think even if you had told me that I had just had some terrible illegal drug i would not have cared, in fact i probably would have said sign me up for more. To be so desperate to feel this way is indicative of how awful i was feeling. But i was given the magic i needed to get me to Vienna. I asked again how long the clinic was closed over Christmas, if it had been only a week I would have stayed, but three weeks was just too long to hang around (too expensive). What a devastating feeling it was to be leaving. The next day, Monday, was finally my flight to take me home; Vienna to London 2hours, then a 3 hour lay- over followed by 13 and ½ hours to Singapore, a 5 hour lay-over and then the final leg. My oxygen machine was not working properly and I was unable to charge it on the London- Singapore leg. So by the time i bordered the flight Singapore to Brisbane, things weren’t going well. To add to the situation, unbeknown to me my travel agent when we changed my flight had not okayed my oxygen machine for this leg with this carrier.

I bordered the plane, reminded the stewardess i had a oxygen machine and would need to have it on charge or another find an alternate for the flight, then went and found my seat. By this stage I was feeling very ill. The long and short of it was, they had to find another seat near a power charger, then find a converter as mine didn’t fit this one, while calling headquarters somewhere in the world to ok my machine on the plane, as well as doing an assessment on me to see if i was fit to travel. The stewardess later told me I was grey and they were worried i wouldn’t last the flight. The plane eventually left with me aboard.

From the Brisbane airport I went to my brother’s place. And then things simply got worse. I had to unpack and re-pack to head the next day to sunshine coast with the rest of the family for Christmas the following day. I felt so ill, my back pain was frustrating, my head/neck still does not turn and is painful, my headaches still difficult, my scalp had/has painful sores and is so sensitive to touch, trying to brush my hair is horrible. Then add jet-lag, along with a very sore throat that felt like razor blades cutting, you may understand i was not at my best.

My sore throat got worse and then moved into a flu, then i tore/strained another muscle in my back (lower left side this time). So every where hurt and by this stage i was feeling very despondent about my lack of health. Where on earth do you go from here. I have spent a fortune on treatment over- seas, I do not know if the doctors here in Australia will follow protocol. I can no longer tell you if i am better then when i left.

I had a friend leave this week, I was so jealous that they could just get in their car and leave, so jealous that they could go back to their every day life. If i could get in a car and leave this situation I would. But i can’t. I can’t. I can’t get off this bus, not even for a moment.

I cannot contemplate this year, not yet. I don’t know if i can get treatment, or where i could get treatment, i don’t know what treatment to get. I don’t know where I will live, i don’t know who will be around. I feel less and less able to see wellness to imagine life other then sickness. I feel that this journey is understood less and less by those around me.