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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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Judgement!

     
“We can never judge the lives of others, because each person knows only their own pain and renunciation. It’s one thing to feel that you are on the right path, but it’s another to think that yours is the only path.”

How many times have you been told by people who think they are trying to help you, ” if you only did some exercise you would feel better” or “if you only ate healthy like I do you will be fine” etc etc. Having a chronic health condition, especially one that involves pain and debilitating fatigue is hard enough, but when you feel judged because others think they know what is best for you, this simply shows their ignorance, not their want to help you, not their need to support you, simply their lack of compassion and understanding. These people seem to like to find fault in what you’re doing like there is a reward for it.

When I finally worked out for myself that I had PCOS, I decided I had to figure out what would heal MY body to achieve a pregnancy, not what the Doctors thought would help, ie simply lose weight and you can read what I did to do that in my PCOS story part 2. as it is not about losing weight but how you heal yourself.

Once more I am faced with some health issues that I again have diagnosed myself, and now I find the Drs even less understanding as I just turned 49 and they think I will soon enter menopause so, meh who cares! However my PCOS is slowing killing me and once again I have to go within to heal myself. I strongly believe its not about losing weight or eating just raw vegetables that heals us, I believe it is a mind, body and soul project.
So….

I’m going on a journey!

That’s right I am off on a journey, to a really exciting place, where spiritual enlightenment will be deepened and childhood issues will be healed. It’s a wonderful warm place, where I feel comfortable every time I visit and the host makes me feel loved unconditionally.

I am going to visit ME.

Yes that’s right I’m sure some of you have been there before, it’s a magical place and I can’t wait to go. It’s been calling me for a while now, and of course I kept putting it off, waiting till I had enough time or finished my last reading, but my body grew tired and developed symptoms that I could no longer put off. I believe there is only one way to heal my body and that is by listening to it. Doctors wanted to give me medications but I know my body does not like that and just as I healed myself once before I will again, so I am finally going….

And when I return from ME I hope to be able to share my experience with YOU! 

Thank you to my wonderful support team Bill, Jean and my soul sister Steph and of course my amazing husband who has shown me that he loves me whether I am fat, thin, sick or well!

That is what true love is about, not judgement!

Lots of love always 

Aurora

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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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New Web Site is up and running!!

After many many months of hard work from both myself and MrD, the new web site is up and running and I am so proud of it.

I decided to change the whole look of the web site for a few reasons and after a lot of thinking and comunicating with my clients and friends.

I have a lot of followers and clients whom due to illness are much more comfortable using an iPhone or iPad or other mobile device which wouldn’t load the flash on the old web page, also I wanted to make it user friendly for visually impaired people as well, I tried really hard to accomodate every ones needs and I hope I have succeeded!

Thank you to everyone for your patience.

The new web site can be found HERE

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Fighting My PCOS Poly Cystic Ovarian Part 2

Thank you to everyone for your wonderful support and feedback for Part 1. which can be found HERE

It is nice to know that I can reach out to others out there who are also dealing with this syndrome

I will continue where I left off, trying to conceive….

By this time I was frustrated at not being heard, I was ready to give up work and was now trying to fall pregnant. I was told by the doctors that I would never be able to have children because I was not ovulating and they didn’t know why, but being stubborn as I am I wasn’t going to take that for an answer, so I told him I would like to try and was put on all sorts of hormone replacements and hormone patches to try and induce ovulation, then I would haemorrhage and then go off them and have no period. I was still having numerous D&C’s to remove polyps and then they put me on Clomid to try and bring on ovulation and I had to drive an hour every morning to have blood tests to check and monitor my hormone levels – I was living in the country and I didn’t have this facility close by.

The Clomid made me so ill, I was having hot flushes, dizziness, vomiting and generally feeling very unwell. But hey, I was ovulating and producing 6-7 eggs a cycle.

The exhaustion coupled with the still undiagnosed fibromyalgia was only compounding the problem but I continued to do it for quite a few months. Then one day they called me into the office and told me that this was not going to work for me and that I needed to stop and they were refusing me any further treatment, I was not happy. So I went to the head of the hospital and said they are denying me the right to continue to try and  fall pregnant, to which he replied ..”we don’t have the resources to continue with someone who is a lost cause…”. I was shocked by this and was still not going to take NO for an answer. I left in tears, went home and pondered on it quite deeply and thought – I am going to have to do this on my own – so I contacted the head of the hospital again and told him he could not deny me blood tests and I wanted the tests to monitor my hormone levels, that I didn’t require any other treatment or any doctors to follow me up, all I want is the blood tests to which he agreed.

So now what do I do? I was basically told I was infertile, no one wanted to help me, no one had a diagnosis as to why I wasn’t able to conceive..now what?

That was when I decided I needed to go within and truly connect with my inner self and work out why was this happening, what was the cause of why I wasn’t getting pregnant. Was it fear? Was it hormonal? Was it my body?, So was it physical, emotional or spiritual?

I wanted to have a baby, so I knew it wasn’t emotional, I knew that spiritually it was time for me to have a child so I knew it wasn’t spiritual so then I realised it was a physical thing.  I had gained a fair amount of weight by this time, with the stress and the pain and the rampant hormonal changes and this was what they were blaming it all on – weight gain – not why I would be gaining weight, but purely that overweight=inability to conceive! Fobbing me off as just another overweight patient who couldn’t  fall pregnant and it was heartbreaking.

I wasn’t about to go on a strict diet and lose a few pounds so they could then put me back onto the cycle of hormone replacement and not actually work out what the underlying problem was, I just wasn’t going to do it.

I then went on a very long and costly journey of natural therapists and herbalists, Chinese medicine and iridologists, all trying to help but never quite getting it right. Everyone was always focusing on losing weight NOT why I was gaining weight in the first place…a hormonal imbalance! Why wasn’t anyone listening? I had read a bit about PCOS by this time and had almost self diagnosed myself but no one would listen enough to point me to a specialist to get a proper diagnosis.

So I went to the local library and read every book I could on trying to conceive naturally and I believe that when you look at these things you need to look at what resonates with you and take that information and leave the rest aside.  So I chose some aromatherapy books, some herbal books, some books on conception and on hormonal issues.  As I am a bit of a “flicker”, I would flick through and see what I made a connection with and take that on board and move on to a new book, I read and read book after book and I decided that what I needed to do was what was right for me.

I needed to sort out my hormone problem myself and I wasn’t about to go on a diet, I wasn’t about to go on anything too strict, but I totally changed everything I was doing. I gave up work so I wasn’t stressed any more, I eliminated all processed food out of my diet – I didn’t go crazy, I just made everything from scratch and went as organic and I could and that was mainly so I could detox my body.  I took some supplements which I don’t think really helped but didn’t hurt either, I did drink raspberry leaf tea and I think that helped to prepare  my uterus lining as I wasn’t ovulating and when I was I was haemorrhaging so I needed to calm it down and  I felt the raspberry leave tea helped that. The other thing I did was get rose geranium and chamomile oils and rubbed them on my stomach every day, it had a very calming effect. I was feeling very calm and was now losing weight, I started to meditate and exercised slowly as I still had undiagnosed fibromyalgia, so I had to learn what worked for me and what didn’t.

After a little while I ovulated! I knew when I had ovulated as I would get such intense pain – I think with PCOS you do get more pain as the egg follicle is a lot more dense and has quite a hard membrane to come out of so it is quite painful, so I had to continue on this path and now I was taking my temperature every morning waiting for it to spike and checking out my cervical mucus and this was all the knowledge from reading the books I had found, I was still going to have my blood monitored but not as often and I had to continue on this healthy path.

The first time that I decided to try it all out when my temperature had spiked, I was pregnant!

I went to the doctors to confirm and sure enough the so called impossible had happened, I was pregnant!  I went to the hospital knowing full well I was pregnant but needing the blood test anyway and they confirmed.  A few weeks later I got a congratulations letter from the head of the IVF department asking me if I would like to come and talk to other overweight women and how losing weight helped me to fall pregnant, when I replied that it was NOT losing weight but how I did it that mattered, I never heard back.

I went on to have a healthy pregnancy and a healthy baby girl.

I continued to live a healthy life style and conceived my second daughter 18 months later, again, unaided by drugs and unhelpful doctors.

But I still had undiagnosed PCOS which would flare up again putting me in and out of hospital for the next few years and lead to what could have been a deadly diagnosis…

To Be Continued………..

 

 

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Fighting My PCOS Poly Cystic Ovarian Syndrome Part 1

**Please note I am very graphic with my details in this blog**


When I was young about 15 I  suffered with heavy periods and mind numbing cramps when I had my period, so, as they do, I was put on the pill, that lasted all of about a month, I felt so ill I went off it and forgot about it, learning to deal with the pain instead, using hot packs and a Panadol.

As I got older, around 17 -19 I had horrible pains, which I would later learn through my own investigations was Mittelschmerz, lower abdominal pain that occurs in women at or around the time of an egg is released from the ovaries (ovulation). However I was told it was stress and to just relax and when that didn’t help and I actually passed out from the pain one day, I has in hospital having my appendix out!  That was the “diagnosis”

I continued to have pain and as I also had undiagnosed Fibromyalgia, I wasn’t sure half the time where the pain was coming from, I simply hurt all over and now I was developing new symptoms, hemorrhaging, massive clots and just feeling sick all the time, doctor after doctor would see me and send me away with new medications, which never worked and only made things worse, I was diagnosed with the same banner they put people in when they fit into the “too hard basket” depression! I had never had a depressed day in my life so I refused to believe it and also refused to take the anti-depressants they were trying to get me to take.

I went on about my life, got married and worked, usually with a lot of pain, but I just thought I was lazy and so I pushed through, I started to gain weight around 19, being told now that THIS was what the problem was, I needed to lose weight and all my problems would go away, I hasten to add I wasn’t even overweight, merely well-developed and curvaceous, however the weight did continue to pile on and then all of a sudden I missed several periods, I would go over a year with no period at all, “lose weight, you’ll be right” was all I was told, so I did, I lost weight and now my periods returned with a vengeance, back to the hemorrhaging, massive clots and just feeling sick all the time, now I was passing hard polyps and in and out of hospital having Dilation (or dilatation) and curettage (D&C) they would find large polyps and remove them then I would go home and nothing would change.

One day after D&C I was recovering in the hospital when I felt this horrible pain in my stomach, as I had put up with so much pain for so many years I just laid there, when the nurse came in I asked her for some pain relief, “you don’t look like someone in pain” she said, I rolled around in pain for a while then felt so sick I was on my way to the bathroom when I felt one of those horrible gushes and onto the floor was blood and a large polyp, when I pressed the button and the nurse came in she looked at me, looked at the floor and said “oh my you must have been in a lot of pain” duh!!

The doctor told me there wasn’t much to report and to go home, I did, and I continued on the cycle of heavy periods and no periods. Not game enough to continue seeing a doctor or telling anyone how bad I felt, I simply continued on.

After many years of this roller coaster of pain, hemorrhaging, anaemia, fatigue and sheer frustration, I wanted to get pregnant, but by now I was not even having a period, at all again!!. I was not coping at all well, especially when the doctors told me I would never be able to conceive due to the lack of ovulation.

To be continued…………

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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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Chakra Healing and Balancing

There are two main ways gemstones are used on chakras — placement on a single chakra at a time or placement on all chakras at once. One can experiment to see what works best for them.

Chakras are the 7 main energy centers of the body according to Eastern medicine.

They are in the center of the body, starting at the base of the spine and running up to the top of the head.

  1. Root/Base Chakra
  2. Sex/Navel Chakra
  3. Stomach/Solar Plexus Chakra
  4. Heart Chakra
  5. Throat Chakra
  6. Brow/Third Eye Chakra
  7. Crown Chakra

To find a chakra:

  1. Use a gemstone and circle front of body in alarge circle over where a chakra should be
    • many gemstones will work — but I find Black Onyx easiest
    • one can do this without a gemstone after practice but using a gemstone makes it much easier
  2. Slowly decrease the size of circle following the energy.
    • With Black Onyx, you can feel where the Chakra is by where you place it on your body. One’s body will tingle where chakras are.
    • Other gemstones can be more subtle. The gemstone simply feels like it is being lead to the Chakra.

Single Chakras

Often one simply wants to work on a single chakra. Simply place a gemstone or strand of gemstones on a Chakra and keep them there from 3-25 minutes. I prefer using clear optical quality quartz on chakras. However, here are the stones that others recommend on each chakra.

  1. Root/Base Chakra: Black Onyx/Obsidian
  2. Sex/Navel Chakra: Carnelian
  3. Stomach/Solar Plexus Chakra: Citrine
  4. Heart Chakra: Rose Quartz/Ruby
  5. Throat Chakra: Indigo (translucent Sodalight)/Purple Rainbow Fluorite
  6. Brow/Third Eye Chakra: Amethyst/Aquamarine/Lapis Lazuli/Clear Quartz
  7. Crown Chakra: Amethyst/Clear Quartz

One can always substitute clear quartz sphere or strand of frosted quartz for any chakra. Other people have different charts. Experiment. Find what works best for you! If a stone ever feels very uncomfortable, I recommend removing it.

Another way to do single chakra therapy is to take a single stone and sequentially work your way up the chakras. Ie. put malachite on your root chakra for 3-5 minutes; then on your sex chakra for 3-5 minutes, etc. This teaches you multiple things:

  • How a stone feels on each chakra
  • Which chakra it works best on (or does it feel good on all)
  • If the stone works well on more than one chakra

My favorite gemstone to do this with is emerald (a 2″ ring of beads works GREAT). My clients have found this very healing.

All Chakras

The easiest therapy is to take 7 clear quartz spheres or 7 strands of frosted quartz and place them on all your chakras – starting at the base chakra and working your way up. Let them stay on your chakras for 5-25 minutes. Remove the strands in the opposite order — starting from the crown chakra. You may wish to wear a strand of frosted quartz when done to help maintain your balance.

I have tried this therapy w/ spheres and strands of several types of gemstones. When using other gemstones, I recommend using with spheres.

  • I tried this once with strands of black opal and it was very overwhelming.
  • Green Aventurine felt healing but didn’t help nearly as much as putting it directly on an organ that needed it.
  • Amethyst was very uplifting — but it seemed to be much better on the higher chakras singly or directly on an organ such as stomach or liver
  • Rose quartz felt good — but my body wanted more rose quartz on heart chakra than on other chakras
  • Rhodocrusite was too strong for me. Try it for a very very short time (15 seconds) on a single chakra. Always follow it by something soothing/healing.

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