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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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Please Understand Me.

“If I do not want what you want, please try not to tell me that my want is wrong.

Or if I believe other than you, at least pause before you correct my view.

Or if my emotion is less than yours, or more, given the same circumstances, try not to ask me to feel more strongly or weakly.

Or yet if I act, or fail to act, in the manner of your design for action, let me be.

I do not, for the moment at least, ask you to understand me. That will come only when you are willing to give up changing me into a copy of you.

I may be your spouse, your parent, your offspring, your friend, or your colleague. If you will allow me any of my own wants, or emotions, or beliefs, or actions, then you open yourself, so that some day these ways of mine might not seem so wrong, and might finally appear to you as right — for me. To put up with me is the first step to understanding me. Not that you embrace my ways as right for you, but that you are no longer irritated or disappointed with me for my seeming waywardness. And in understanding me you might come to prize my differences from you, and, far from seeking to change me, preserve and even nurture those differences.”

This is an excerpt from the book Please Understand Me 2 by David Keirsey.

Love Aurora xx

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Chakras, how balanced are yours?

Hi everyone, I have been AWOL for a little while as I was using all my energy to heal my own cold weather woes, the dreaded lurgey!

So it made me think about balancing myself to be able to get back into helping people again and the best way I find to do this is to balance my Chakras.

The word ‘Chakra’ is derived from the Sanskrit word meaning ‘wheel’. If we were able to see Chakras we would observe a wheel of energy continuously revolving or rotating. Each chakra rotates at a different speed and vibration and also relates to different areas in the body and resonates with colour and sound.

One of the reasons that many people fall ill is because their chakras become out of alignment, they are ‘imbalanced’ or there are blockages which restrict the free flow of the body’s energy.

Below is some basic information on the location, colours and effects of the Chakras. They are of course much more complex and the colours can vary greatly.

There are 7 Major Chakras;

1/Root Chakra
The Root Chakra is located at the base of the spine (pubic bone) and is red in color. The Root Chakra is associated with physical security and safety, money, basic needs for yourself and loved ones, and self-esteem. Fears or obsessions relating to physical needs and safety can put the Root Chakra out of balance. An unbalanced Root Chakra often manifests as physical problems related to reproductive organs and sexual vitality and problems with the lower back, hips, and legs.

2/Sacral Chakra
The Sacral Chakra is located just below the naval and is orange in color. The Sacral Chakra is associated with physical pleasures, confidence, addictions, appearance, and relationships with others. Fears or obsessions relating to physical pleasures and what others think of you can put the Sacral Chakra out of balance. An unbalanced Sacral Chakra often manifests as physical problems related to the lymphatic system, lower intestines and digestive system.

3/Solar Plexus
Chakra The Solar Plexus Chakra is located just above the naval and is yellow in color. The Solar Plexus Chakra is associated with personal power, and control of yourself or others. Fears or obsessions relating to control and power can put the Solar Plexus Chakra out of balance. An unbalanced Solar Plexus Chakra often manifests as physical problems related to digestive difficulties, liver problems, and food allergies.

4/Heart Chakra
The Heart Chakra is located in the middle of the chest and is green in colour although pink is often also associated with the Heart Chakra and the colour I prefer to use. The Heart Chakra is associated with love, relationships, attachments, forgiveness and emotions. Fears or obsessions relating to love and relationships, or the need to forgive others or yourself can put the Heart Chakra out of balance. An unbalanced Heart Chakra often manifests as physical problems related to the heart, circulatory and respiratory system.

5/Throat Chakra
The Throat Chakra is located at the throat and is light or dark blue in color. The Throat Chakra is associated with communication and creativity. Fears or obsessions relating to communicating and speaking your truth can put the Throat Chakra out of balance. An unbalanced Throat Chakra often manifests as physical problems related to back pain, ear infections, throat irritations, skin irritations or thyroid problems.

6/Third Eye/Brow Chakra
The Third Eye or Brow Chakra is located on the forehead and is Indigo in colour. The Third Eye Chakra is associated with intuition, dreaming, and beliefs. Fears or obsessions about beliefs or trusting your intuition can put the Third Eye Chakra out of balance. An unbalanced Third Eye Chakra often manifests as physical problems related to headaches, vision or dulled senses.

7/Crown Chakra
The Crown Chakra is located on the top of the head and is purple or violet however I have seen it as white or even golden. The Crown Chakra is associated with knowledge, understanding, wisdom and connection to the Source. Fears or obsessions about understanding and compassion can put the Crown Chakra out of balance. An unbalanced Crown Chakra often manifests as physical problems related to our head and nervous system, or as depression or a feeling of lack of purpose. It is important to open this one as it is the Chakra through which you obtain the highest understanding and the highest knowledge.

To help awaken and unblock your Chakras you can use: Meditation, guided visualisation, energy work. I like to use drum healing, crystals and MAP Healing. During any crystal healing session all Chakras should be be open to help them all move freely again.

If you would like to book a Chakra Healing please click HERE

Love Aurora xx

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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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Season or Reason

Reason, Season, or Lifetime

People come into your life for a reason, a season or a lifetime.
When you figure out which one it is,
you will know what to do for each person.

When someone is in your life for a REASON,
it is usually to meet a need you have expressed.
They have come to assist you through a difficulty;
to provide you with guidance and support;
to aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.
They are there for the reason you need them to be.

Then, without any wrongdoing on your part or at an inconvenient time,
this person will say or do something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON,
because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it. It is real. But only for a season.

LIFETIME relationships teach you lifetime lessons;
things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person,
and put what you have learned to use in all other relationships and areas of your life.
It is said that love is blind but friendship is clairvoyant.

— Unknown

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Fibromyalgia Poll

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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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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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