Fibromyalgia

Phew what a year!

Hi Everyone,

I have had some lovely emails and messages asking where I am and how am I going. Well I am going great thank you and I am still around.

It has been an extremely busy past 12 months with readings and healings helping and connecting with amazing people both here in Australia and overseas and as many of you know I only really blog when I feel inspired to do so with some passion.

I don’t blog often but I am always around so please feel free to enjoy the blogs I have posted so far and always email me if you would like to chat or book a session with me. I look forward to it!

Much Love Always
Aurora xx

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CFS/ME and every other unseen illness

I don’t usually like to post or even discuss any “woe is me” type of articles, but I watched this and some of the key statements in this video I related to.

I was diagnosed with Myalgic Encephalomyelitis in 1994 after the birth of my second child. When I finally got a diagnosis there was a sense of both relief and dread, because now I knew I wasn’t actually dying, even though it felt like it, but now I had a diagnosis of an illness that many people knew nothing about, or was referred to as the Yuppie Flu, or as my mother put it, “isn’t that the thing lazy people get”

Today I have been diagnosed with other illnesses as well and the puzzle of my health has been slowly fitting into place, there are some pieces missing but with my own intuition and Dr Google I, myself, alone, found, diagnosed and then went to the Doctor for confirmation and I will continue to do so until that last piece of the puzzle is found.

I have just come through the tail end of a very long and debilitating flare so I wanted to share my new diagnosis of Hyperadrenergic Postural Orthostatic Tachycardia Syndrome

More later

With Love
Aurora

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I actually am awesome!

Right? we all are in our own unique way, it’s just most of us, me included, sometimes fail to see just how awesome we really are.

I have a lot to be grateful for, I have a lot of people from my childhood and my past who I have to thank, simply for being a part of my life, whether they were in it for a long time, a short time, a happy time or a sad time, they all taught me something and for that I am grateful.

I am grateful for being left in the hospital at the age of 6, terrified, having my tonsils out, while I comforted the little girl who waited for her parents to arrive, with no visit from my parents. From that I learnt how compassionate a person I am and when they left me at Kindergarten on my first day and were so late to pick me up that I never wanted to return again, for those and so many other experiences of abandonment I am entirely grateful, for I learnt how to be a fantastically loving and caring mother to my own children.

I am grateful to my sister who teased and taunted me my whole childhood that she was better than me as (she said) I was fat and unhealthy so I would never be as good as her and has now judged me as being fat and unhealthy without even knowing or asking about my health issues; you know why I am grateful to her? Because of her I do not judge other people, or make them feel bad about themselves.

I am grateful for having a family whose ideals are that unless you eat and do the same things that they do then you will never be acceptable or as healthy as they are, from this I am always thankful that I know I never force my beliefs onto others, and I practice being practical not radical.

I am forever grateful that I met and married my ex husband, who made my life a living hell when we mutually decided to separate, even though he stalked me and almost broke me, I am eternally grateful to have had him in my life because I have two beautiful daughters who are as strong and independent as I had to learn to be to get through that time in my life.

I am grateful to my dad for being a searcher, for always seeking the answers to lifes big questions, because with out his need for spiritual understanding I wouldn’t have found my own.

I am grateful for my two ex best friends who lied and hurt me beyond belief, because they taught me that theirs was not a true friendship and to never settle for that again and so when I met my best friend Dawn, who hugged me tight and cried with me at my dad’s funeral and flew interstate to be with me on my wedding day in 2011, I knew that I had met a true friend.

I am grateful to my mum for never believing in me, because even though she made me believe I would never be anything, she taught me that she was oohhh so wrong.

I am grateful for the large houses that I struggled to pay for when I was single and raising my two daughters, because it has made me appreciate the cosy home I now own, mortgage free, with my husband. It’s perfect.

I am grateful for meeting a lady who battled cancer with the biggest smile on her face and won. Every day I admire her and rejoice in the fact that she is well and can share her life with me, when she sent me the picture below and told me it reminded her of me, I realised that maybe she was just as grateful to have me in her life as well.

I am eternally and wholeheartedly grateful for the abusive partners I have had in my life, the relationships that would push my boundaries beyond their limits and test me to he point of exhaustion, because they taught me how to set those boundaries and never accept another person into my life who showed me no respect and how to be strong enough to remove anyone from my life who couldn’t be totally accepting and respectful.

Which brings me to the person who inspired this post, my husband, the only person who has come into my life thus far, who has shown me unconditional love, has never judged me, allows me to be free to be myself and grow and shows me every day how much he loves me. He is truly a spirit that I made a soul agreement to meet in this life time and if I had to suffer all that I did in the past to allow him into my life, then I am ever so grateful, I love him with my whole heart and soul.

The other day he walked into the room where I was sitting and sat down next to me and kissed me gently and said “You are so amazing, I am so proud that you are my wife, never forget how amazing you are”. He kissed me gently again and went to walk away then he turned back and said, “and never give up”.

He sees every day the struggle I go through, the pain – emotional and physical – that I deal with and every day he makes me feel like I am the most awesome woman he has ever met. So who am I to not believe him and who am I not to believe in me!

I am awesome!

Gratitude

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And the healing continues

Hi Everyone,

I thought I would pop in and just give a brief update as I haven’t been around much lately.

My last post was about my own healing journey and how I was going to a wonderful place inside myself to do some inner work – well all I can say is once you step inside there you discover an awful lot about yourself.

Not that I didn’t already know this or been there before, but this journey has been particularly long and arduous and I have certainly met some interesting characters along the way, some who have shocked me, some who have helped me and some who have totally baffled me.

Yet each of them have enriched my journey immensely and enlightened my path even with their venom or uncaring nature. So for that I thank them.

I decided to give the Dr’s a miss and heal myself and the most amazing thing happened, I developed a small lump on my stomach which grew rapidly and developed into the most painful expericence I had encountered.

I had some burning sensation on the skin on my stomach, as I felt it I noticed a lump it was quite big about the size of a 50 cent piece, it wasn’t sore so I left it, thinking it was just a cyst or boil or something….but it had a few edges to it. Later that night I had what felt like an ovarian cyst burst, then the lump began to grow and became painful beyond belief I was in agony……I left it hoping it would go away ( I hate drs and of course drugs) by the next morning it was the size of the palm of my hand, red blistery and very nasty….by this time I couldn’t walk as it was in a position that it was pressing on my leg as I walked it was so big…so I waited and called a locum, he told me I needed to go to emergency ASAP and have IV antibiotics…..I wasn’t happy, I have a fear of hospitals and put it off as much as I could, but by now it was red and angry and was yellow and black and looked like I was about to give birth to an alien! So in absolute agony and tears I got down the stairs and we went to emergency. We waited hours and hubby said by now I was looking yellow around my eyes and mouth, I was admitted and given an IV antibiotic. I am highly allergic to pretty much all drugs so I had bad reactions to two of them and by the next morning it was even bigger it was now the size of my whole hand and poked out about as big as my fist.
I was admitted by a surgeon to the hospital, I’d been in ER all that night, as I was sitting up to get into the wheelchair it ruptured, I saw blood etc all over the bed….It was about 7am….I went to my room and hoped it would all be ok now and I could avoid surgery, but I was told I still needed it….they finally took me into theatre at 8.45pm that night.

The doctor said he cut something out he’s never seen before, but by the next morning I was feeling so much better, not only pain wise but this horrible fatigue and fever and aching I’ve had for sooo long had gone….

Now I’m wondering what on earth it was and if I’ve had something brewing for years?

I went home with the best carer ever, my hubby, who never left my side and was an amazing support.

I had a gapping hole in my tummy that needs to heal now and had to wash and pack it at home and was feeling better, however 3months later I still have a hole that is healing and that is where my other journey began

Being bed ridden for so long I was going crazy, but I didn’t have the energy to do much else, so I decided to use the internet to keep my creativity alive.

This is where the fun began – albeit tedious and emotional.

To be continued

Aurora

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The Straw Theory – Helping to understand Fibromyalgia

The Straw Theory

 By Penny Reed

I was visiting at my Dads having coffee like I usually do on my level 6 pain days, My Dad asked me for the first time what it felt like to have fibromyalgia/chronic pain I started to ramble on about pills, and aches and pains, but he kept pursuing, and he already knew about the pills, he bought them for me half the time because of not being able to work, I thought he already knew the medical definition of fibromyalgia. Then he looked at me with a face every fibro person knows well, the face of pure curiosity about something no one healthy can truly understand. He asked what it felt like, not physically, but what it felt like to be me, to be in chronic pain 24/7.

I was flattered someone in my family actually wants to know and cares enough to want to ask. I said I have a bipolar body Dad, pain along with emotions , having the flu and riding on a roller-coaster all the time.now how do I explain every detail of every day being effected, and give the emotions a fibromyalgia person goes through with clarity. I glanced around the table knowing the spoon theory for lupus, at that moment, the straw theory was born. I grabbed every straw in my Dads kitchen; I said Dad there’s a spoon theory but fibromyalgia is different so I’m going to make a straw theory “Here you go, you have fibromyalgia”. He looked at me slightly confused, as anyone would when they are being handed straws for no reason.

I explained that the difference in having fibromyalgia and being healthy has to make choices, not even having choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without chronic pain with choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used straws to convey this point. I wanted something for my Dad to actually hold, for me to then take away, since most people who have fibromyalgia feel a “loss” of a life they once knew.

If I was in control of taking away the straws, then he would know what it feels like to have someone or something else, in this case fibromyalgia, being in control. He didn’t understand what I was doing, but he is always easy going. I asked my Dad to count his straws. He asked why, and I explained that when you are healthy you expect to have a never-ending supply of “straws”. But when you have to now plan your day, you need to know exactly how many “straws” you are starting with. It doesn’t guarantee that you might not lose some along the way, or all of them , but at least it helps to know where you are starting. He counted out 10 straws., I asked him to list off the tasks of his day, including the most simple. As, he rattled off daily chores, as he’s 62 and retired ,this helps him not lose all his straws compared to when my dad was younger hard working man ;

I explained how each one would cost him a straw. And you have to think about what you’re doing tomorrow because muscle groups that are used the most today may hurt more tomorrow. He jumped right into getting ready for the day as his first task of the morning; I cut him off and took away a straw. I had to remind him he’s in pain. I said” No! You don’t just get up. You have to fight the severe stiffness, and then realize you have firm knots in your muscles, causing restricted movement and radiating pain. Can’t move and have to wait for your body to release some muscles. You didn’t sleep well the night before. exhaustion from head to toe, You have to crawl out of bed being in severe pain and stiff, some days takes hours to crawl out, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your straws for today and tomorrow too.” I quickly took away a straw and he realized he hasn’t even gotten dressed yet. Showering cost him a straw, just for washing his hair and shaving. Reaching high and low that early in the morning could actually cost more than one straw, but I figured I would give him a break; I didn’t want to scare him right away. Getting dressed was worth another straw. I stopped him and broke down every task to show him how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question.,

I have neuropathy I need to wear big clothing to stay off my skin and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think he was starting to understand when he theoretically didn’t even get to do anything, and he was left with 6 straws. I then explained to him that he needed to choose the rest of his day wisely, since when your “straws” are gone, they are gone. Sometimes you can borrow against tomorrow’s “straws”, but just think how hard tomorrow will be with less “straws” and what if you get a bad flare up. I also needed to explain that a person who has chronic pain always lives with the feasible thought that tomorrow may be the day that you have a flare up and can barely even walk to the bathroom and you feel like you’re dying from the flu and so on. Fibromyalgia may not kill you but it sure can make you wish it did on severe flare ups. So you do not want to run low on “straws”, because you never know when you truly will need them. I didn’t want to depress him, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and he slowly learned that skipping lunch would cost him a straw, as well as standing on a train, or even typing at his computer too long. he was forced to make choices and think about things differently, Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks. This symptom is referred to as “fibro fog” and he will easily get distracted, loss a straw. Hypothetically, he had to choose not to run errands, so that he could eat dinner that night. When we got to the end of his pretend day, he said he was hungry. I summarized that he had to eat dinner but he only had one straw left. If he cooked, he wouldn’t have enough energy or the pain would be severe to clean the pots. If he went out for dinner, he might be too tired to drive home safely also your will arms hurt so bad driving. Then I also explained that I didn’t even bother to add into this game, that he was going to be in too much pain that cooking was probably out of the question anyway. So he decided to make soup, it was easy.

I then said it is only 7pm, you have the rest of the night but maybe end up with one straw, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all. I rarely see him emotional, so when I saw him upset I knew maybe I was getting through to him. I didn’t want my Dad to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. He had asked quietly “Penny, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more straws than most. But I can never make it go away and I can’t forget about it, I always have to think about it because I always feel Widespread Pain I handed him a straw I had been holding in reserve. It’s hard, the hardest thing I ever had to learn is to slow down, and to relax even if I tried I can’t do everything with chronic pain and exhaustion all the time. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.

I wanted him to feel that frustration. I wanted him to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my level pain that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war for that day but cannot make plans for other days ahead, we can only know the morning of what may be possible for that day. It is in that lifestyle, the difference between chronic pain and healthy. It is the beautiful ability to not feel pain and to be able to not think and just do. I miss that freedom. I miss never having to count “straws”. After we were emotional and talked about this for a little while longer, I sensed he was sad. Maybe he finally understood. Maybe he realized that he never could truly and honestly say he understands. But at least now he might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to his house and he always has to drive to mine.

I gave him a hug when we walked out of the kitchen. I had the one straw in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many straws people waste every day? I don’t have room for wasted time, or wasted “straws” and I chose to spend this time with you.” Ever since this night, I have used the straw theory to explain my life to many people. In fact, my children, family and friends refer to straws all the time. It has been a code word for what I can and cannot do. Once people understand the straw theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding fibromyalgia and chronic pain, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their pain free life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “straws.”

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Fully Booked

Thank you to everyone for your wonderful support, it has been such a joy and pleasure to be able to work with so many of you, knowing that I am helping you to alleviate your pain and help with your growth means the world to me and makes what I do worth while

As of today I am fully booked until December and can’t take on any new clients for now, so I encourage you to put your name on the waiting list in case I have any cancellations.  To do this please click HERE.

I will still be updating the blog, keeping you up to date with the Flare Repair and also working on new and exciting ways to make my services available and accessible to everyone.

Keep an eye out on the web page for new –

Meditation MP3’s

Healing MP3’s

Pain Relief MP3’s

Exciting new Flare Coach Service.

Plus more….

Blessings to you all

Aurora xx

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I am Fibro

By Terri Been

Hi…My name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too.

You didn’t ask for me. I chose you for various reasons: that virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you are going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. You have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day. Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 years ago: not hearing that you said 20DAYS ago. Some will start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person and can’t remember what you were going to say next.

In closing, {I was hoping that I kept this part a secret}, but I guess you already found out…the ONLY place you will get any support and understanding in dealing with me is with other people with Fibromyalgia.

Thank you to my lovely friend Linda xx

 

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Fibromyalgia Poll

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Just because you cant see the wind….

“Just because you cant see the wind, doesn’t mean it does not exist” Aurora T

I have been asked what the meaning is behind this quote and here is the answer..

I felt it covered everything I do and I believe in, Mind, Body and Soul.

Mind: I believe that what we think we attract, so even though we can’t see the energetic level these thoughts vibrate on, sooner or later you will know it, as you will attract those things into your life.

Body: As I suffer from illness’ that can’t be seen as such, like a broken leg can be seen when it is plastered, it doesn’t mean that it isn’t real. I have learnt to never judge people unless I know the facts and this has come about from being judged myself when I have needed to wear sunglasses in a bright shopping center for example as I have had a raging migraine and no one to go to the shops for me, and countless times people have said to me “you don’t look sick”

Soul: I can get information from the other side, and I feel things about people, why? I don’t know, I see it as a gift and I use it wisely, however I can’t see it, but it does exist.

And that is where the quote comes from, I use it, I believe in it and I love it!
Aurora T

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May 12th is Awareness Day for ME/CFS and FMS

Why Was May 12th Chosen as Awareness Day for ME/CFS and FMS?                                                                             Florence_Nightingale_CDV_by_H_Lenthall

In 1992, Tom Hennessey who resides in the United States, founded Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases, (RESCIND, Inc.), and realized that an international day was necessary to bring awareness to ME/CFS and chose May 12th as the day for awareness activities because it is the birth date of Florence Nightingale.

Florence Nightingale, the English army nurse, became chronically ill in her mid-thirties and may have been ill with ME/CFS and/or FM. Ms Nightingale represents unselfish dedication and for the past 50 years of her life was bedridden but still managed to found the world’s first school of nursing. In her memory and for her dedication, this day was chosen. Early support for Awareness Day came from a group located in the United Kingdom called Blue Ribbon for the awareness of Myalgic Encephalomyelitis (BRAME) and highlighted this day at a World Medical Conference on ME/CFS in 1995 which to the establishment of it becoming an international awareness day.

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