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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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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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My Fibro

As a sufferer of Fibromyalgia, I hope that I can help you with your pain and how to deal with why you have chosen to deal with this condition in this life time, I understand your pain and how you feel……..

Please read this as I think it describes FMS very well.

If you were born with healthy genes, you may know me but you don’t understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn’t know how sick I was, you called me lazy, a malingerer, or simply ridiculous.

If you have the time to read on, I would like to help you understand how different I am from you. WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn’t a disease at all, and it isn’t even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an “all in your head” disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.

6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that cramp you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days – If you see me smiling and functioning normally, don’t assume I am well or that I have been cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia. Author’s note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia.

It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even a day in their shoes…or their bodies.

 

Read more about my fibro at www.thepathbeyond.com


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