Welcome to my page four...

 

 

 

 

 

In 1989, whilst working as a PA in a busy press office of a worldwide company leading in electronics, engineering and mobile phones, I began to feel unwell. Went on a short holiday 'to get over it' except it didn't work. On my return, both my brain and my body went into a type of shutdown. Myalgic encephalomyelitis or ME was the cause.

The journalists didn't know what it was they were reporting. Can't blame them for that. Experts of the medical profession didn't have a clue. 

'Yuppie flu' soon became the popular term. Right! That made things easier.

Tick any or all of the following boxes. Predominantly male aged between 25 - 35 years, preferably a stockbroker, red braces, who went around saying "ja, sure" and "ja, super". The only time I've ever worn red braces was as a toddler to prevent me from wandering off and I've never gone about saying ja despite having a German dad. They were one up on me.

I'd like to dispel the myths of ME.

In recent years, people have been known to get angry because they've seen me walking in town looking like a 'normal' person.

"Why wasn't she in a wheelchair! She has ME, doesn't she?" 

What they don't appreciate is that I'd probably been resting (no physical or mental activity) for a few weeks and this was my first and careful venture out. Hanging on to someone as I went along. Ex-husbands come in handy for that one.

In 1989, I was lucky in that my doctor immediately diagnosed ME/CFS. I'd just turned twenty-nine. Unlucky in that she wanted me hospitalised. Lucky, although at the risk of sounding ungrateful, my mother stepped into her Florence Nightingale shoes and kindly allowed me to stay with her.

Not for long. I was soon home again stumbling along blind and totally unprepared. Six months later I was able to return to work but not yet recovered. Bent on a self-destruction course it was to be a further four years before I finally accepted it and me. The person I became.

 

Over 250,000 people
in the United Kingdom
have the condition known as ME


What is Myalgic Encephalomyelitis (ME) / Chronic Fatigue
Syndrome (CFS)? 

¨ You can't pop a pill to make yourself all better

¨ You can't determine if you have ME/CFS by taking a blood test

¨ It's not yuppie flu - a derogatory and inaccurate term

¨ You can't make sense of it

¨ It's a chronic illness - that means you have good days and you have bad days

¨ Although people with this condition share overall common symptoms, it is highly individual

Personally speaking, I was relieved when ME/CFS was diagnosed. I thought there was something wrong with me.

I did fight it. Not recommended. Acceptance is the key. Accept and embrace your condition and your life will be a whole lot easier to live. It worked for me. It works for me.

Listen to what your body is telling you. Accept you are different. Accept you have to live your life accordingly. You can still experience quality of life. It's a different one, that's all.

Forget how you used to be and what you were capable of doing. That person has been retired and another has taken their place. The key to living a happy life is not whether you have ME/CFS or not.

It's all about attitude.

And this philosophy applies to everyone.

Enough of the negatives, let's look at what you can do, what you are capable of doing. Consider what you are achieving - never mind about what you can't do. No one can do everything. Even people who don't have ME/CFS can't do it all. Think about it.

Accept it. Respect it. And don't hate it. Why? It's you.

 

In 2012 I studied for, and passed proficiently, my A-Level equivalent in Creative Writing. Yea!! J


 

SYMPTOMS   (The list of which is by no means conclusive)

Fatigue
Exhaustion
Muscle pain
Freezing hands and feet
Weakness
Lack of concentration
Lack of coordination
Confusion
Oesophagus difficulties
Insomnia
Sleep reversal (I call it vampire mode. Up all night asleep all day)
Bruising
Sore throat
Flu-like symptoms
Headaches (persistent)
Limited energy
Nausea
Indigestion
Immune system deficiency
Cystitis
Constipation and/or flatulence
Stress
Panic
Type of dyslexia
Aversion to noise, light and crowds
Skin sensitivity
Breathlessness
Organ dysfunction
Intolerance to: foods, drinks, cleaning products (predominantly commercial brands which don't exercise the cruelty-free and natural codes) and many other items/products at one stage or another

Symptoms - too many. I agree. Let's simplify things here. I like simple.

The TWO MAIN SYMPTOMS are: Energy or rather lack of it. Varies considerably from "I feel fine but don't ask me to hip hop" to "I can't even blink."

Flu-like symptoms. Also varies considerably. Everything from a tiny snuffle and slight ache to "Buzz off with your chicken soup I'm a vegetarian."

All these symptoms can fluctuate from one hour, or day, to the next and are highly personal. Some people can experience more of one symptom than another.

I'd like to take this opportunity to point out there is a difference between ME and CFS. However, doctors and the medical profession find it easier to couple the two together. I applaud ME International in their continued effort in pointing out how each condition differentiates from the other. Click on their website at:
http://uk.geocities.com/me_not_cfs/index.html

ME has been classified as a neurological disease since 1969

ME is a potentially fatal disease.