Getting the diagnosis for Chronic Fatigue

In an earlier post “How I manifested Chronic fatigue”  I explained how I got ill.

Too much perfection, too much “try hard to fit in”. A confusion between my hearts desires and the madness of my university educated mind. This all resulted in a death wish of extreme travel.

Thirty years ago Chronic Fatigue was not a diagnosis, if you had it you were considered to be mentally unstable and the treatment for that was Valium.

I don’t do medication and work, my clients deserve a sober opinion from me so that was simply not an option.

I wanted a cure — not the chronic hopelessness of medication.

I went from Doctor to Doctor and I was offered the same thing —  time and time again — Valium.

I had a feeling of hopelessness and I felt misunderstood and abused by the lack of care I was shown by the medical profession.

I was referred to a Gynecologist for the abdominal pain and at that consultation he eluded to the fact he felt that I had many sexual partners when I was travelling in Europe so possibly had pelvic inflammatory diease.

I was confused from the Chronic Fatigue and couldn’t believe that someone would have thought that of me when I had been celibate in Europe — the travel had been so extreme I was not in a frame of mind for sex.

I now know he was a very unkind man but I was young then and believed that others wanted the best for me.

When I woke up from the examination the nurse caring for me told me that the Gynecologist was examining too many women unnecessarily in this way and she though that it was abusive and that the examination showed me to be healthy.

I was on my way to giving up my medical/scientific indoctrination that I had been brainwashed with at university.

I was on my way to trusting myself and allowing myself to have my own opinions.

The fourteenth Doctor referred me to Professor Goodwin at Royal Perth Hospital. After a couple of consultations he diagnosed that I had Chronic Fatigue — now called Fibromyalgia.

My symptoms were extreme fatigue, exquisitely painful lumps in my muscles that moved day by day. Bruising where a lump had been, abdominal pain and although I was constantly tired and slept all night I would wake up exhausted. I also felt fuzzy in the brain at times.

Professor Goodwin’s advice was to cut our all chemicals in my life. In my food, personal care products, cleaning products, everywhere in my life.

Chemicals – Gone!

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He suggested that I only eat the inside leaves of lettuce. He explained that the outside leaves would have pesticides on them. I was to eat white rice as the pesticides of the husks would be removed.  I was to eat only red meat, as white meats had many chemicals and hormones in the production and fish had mercury.

At that time in Australia red meat came off a pristine grass fed paddock, there were no feed lots.

I also learnt to clean my home using water, bicarbonate of soda and vinegar. I stopped using washing power in my wash as the “chemical perfume” immediately increased my symptoms.

Once I removed the chemicals from my environment and diet I learnt that I was super sensitive to any chemicals particularly smells.

The Chemical Overload of a typical day

I will explain how many chemicals you are exposed to in a “normal” Western day.

When you are in bed the mattress is off gassing the anti-bacterial and anti-fungal chemicals it has been treated with, plus the chemical smell of your washing soap powder is being breathed in as you put your head on the freshly washed pillow case.

Your pyjamas are also filled with this artificial perfume and you absorb it though your skin.

If you wear night face cream then you have all the perfumes and other chemicals are being absorbed by your skin.

When you get up and go to the the toilet the toilet cleaner and bleach that has been used to clean it is present so you absorb it though your lungs or skin. Some toilet paper has a toxic chemical “perfume” (phalenes) smell as you wipe it on your delicate absorbing membranes…

You get under a hot shower, and the Chlorine (which is a poison) is released with the heat of the water —  you breathe it in — you brush your teeth with sodium laurel sulphate, propylene glycol and other very toxic chemicals. The shampoo, conditioner and soap each have different and strong chemicals in them, as you use each one. On and on it goes, the chemicals in your towel, make up, hairspray, hand cream etc. and we have not even eaten yet… You are only just out of bed.

This goes on all day and your body is constantly assaulted by these chemicals. Eventually your body becoming overwhelmed as it can’t eliminate all of those chemicals quickly enough and they build up.

Organic – pesticide free food

Of course now you could eat a wide variety of whole organic food. I now notice that Professor Goodwin’s food was gluten free and that means that it was a diet that didn’t increase inflammation. Maybe this could have been part of the magic of his “diet”. Gluten is inflammatory.

Immediately, I was much better but not 100% — sort of 60% better. I was still tired, still in pain, still debilitated — just not so much. I was not state windsurfing champion level of wellness by any means.

I decided to keep working because I was in pain if I worked and in pain if I didn’t work and at least work distracted me.

As a Physiotherapist part of a normal examination is to ask the clients all about their pain, the area, the quality and the intensity.

Most of my clients had less pain than I had. A part of me would be amazed at this, however, I knew that lying all day in bed would just make the pain worse because I would focus on it, so I kept working.

After work I would come home eat some lettuce leaves and if I had the energy; a steak and then go to bed at 5.30 pm. I’ve never been much of a rice eater.

I would stay in bed until morning then awaken exhausted. I would get up have a steak some rice and lettuce – go to work only to repeat this pattern for the five week days.

On week ends I would spend most of the day in bed and just get up to eat and do the basics of house care. I lived alone at the time and I believe this helped as I didn’t have to also engage with others who would probably be using and eating chemicals simply because they were unaware of how sensitive my system was.

I’m now in my late 50’s and I am healthier than most people in their mid twenties. I believe my low chemical exposure and the fact I eat mainly whole organic foods has something to do with that.

The Smiling Psychiatrist

Professor Goodwin was researching this new disease and he asked me if I would attend an appointment with a Psychiatrist for a personality test. He was researching if certain personality types were more likely to have Chronic Fatigue.

I was told I would go and fill in a personality form and that it would only take a short time.

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I liked Professor Goodwin so said I would go. By this time I was suspicious of medical people, so tentatively, I entered the Psychiatrists rooms.

The Psychiatrist ushered me into a chair and sat across from me with a wide desk between us. He had false teeth and a huge fake smile.

He then started to ask me questions.

“How are you sleeping?”

I would say “I actually get to sleep easily put I get woken by the pain at times, and then I roll over and go back to sleep”

He would speak out loud when writing his note and say “Very interrupted sleep pattern and difficulty with sleep.”

“What is your social life like? Has it changed?”

I would say, “I still see my friends and like seeing them but sometimes the pain is too great so I see them less now.”

He would say;

“Becoming socially isolated.”

…and so it went on. That slight change of phrase giving everything that I said an entirely new meaning.

To make myself feel better about this incredibly stupid scenario I imagined myself jumping onto his desk and screaming at him that he was too crazy to be out of the asylum!

I sat there dutifully answering the questions whilst imagining him being locked away for life. It may have even bought a smile to my face?

At the end of this long interview he gave me an even more fake smile and he announced my diagnosis.

He told me that I was a “smiling depressive” and what I needed was valium. With this announcement he pulled out his prescription pad and went to write on it.

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A toxic baby blue drug with a heart in the centre.

I told him that I was working and I don’t do work and drugs so I would not be taking any medication.

He looked surprised and dismissively still wrote the prescription. I repeated that I had no intention of taking Valium. He then angrily handed me the prescription. When I wouldn’t take it he looked resigned—all with that huge fake smile.

Slowly he got up, gave me the personality test to fill in and left the room. I did the test and returned to Professor Goodwin for the result.

The Perfectionist

Professor Goodwin said that I had a perfectionist personality type and that I would be wise to give this up so that I could get better.

I am guessing that you don’t run a business or become a state champion at something without being somewhat a perfectionist and driver. I was not told to go to counselling so I decided to just cut myself some slack and go with the flow more and this is what I did.

This helped and I was better again but NOT COMPLETELY BETTER. I was still in pain, still tired, still not feeling that zip in the morning — that joy for life and the ability to just use my body with ease.

To sum up the first stages for healing Chronic Fatigue that I used were:

  1. I cut the chemicals out of my life — a great book about this is “Slow Death by Rubber Duck” by Rick Smith
  2. I ate gluten free food that was pesticide free. Now you can choose organic whole foods.
  3. I read books and learnt about the perfectionist personality and allowed myself to let go of controlling life.

In the next blog I will explain about adding a spiritual/larger dimension to my life and how that was the last key to healing.

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