Email:
Name:
 
 

 

 

You Are Here: Home > ME/ Chronic Fatigue Syndrome > Living With ME/ Chronic Fatigue Syndrome > Are You Living With ME/ Chronic Fatigue Syndrome?

ME/ Chronic Fatigue Syndrome

Are You Living With
ME/ Chronic Fatigue Syndrome ?

Living With PVFS /ME / Chronic Fatigue Syndrome can be extremely difficult.

Find out more about what you can do below...

Also, you can share your story and experiences of living with ME/CFS or Fibromyalgia here...

Please note: Post Viral Fatigue Syndrome, Myalgic Encephalomyelitis, and Chronic Fatigue Syndrome are believed to fall under the umbrella term 'ME/CFS'. To make it easier for you to read through this page, Sleepydust will use the term 'ME/CFS' to refer to them collectively.

 

Living With ME/CFS

If you have ME /Chronic Fatigue Syndrome , your lifestyle has probably been affected dramatically.

To what extent, will depend on how severely you are affected, but more often than not, ME/ Chronic Fatigue Syndrome can have a devastating effect on one's life.

When you have ME/ Chronic Fatigue Syndrome it's not 'just' about dealing with the harsh realities of the severely disabling physical symptoms. Those are already difficult to deal with in themselves!

But in addition to that, many sufferers find that their lives are literally turned upside down. It is such a disabling illness that it literally can affect every aspect of your life: from your health, to your social life, to your work and income.

And to add insult to injury, you may have been faced with doubts that your illness is even real, by your family, friends, your doctor, and/or society at large.

"American Researchers found that the quality of life is particularly and uniquely disrupted in ME / ICD-CFS and that all participants related profound and multiple losses, including stamina and spontaneity. Activity was reduced to basic survival needs for some subjects. The researchers found that the extent of the losses experienced by sufferers was devastating, both in number and intensity."

-- E.P. Marshall, M. Williams, M. Hooper
'What Is ME? What Is CFS?', [ref 10] --

 

"Twenty-five per cent of sufferers are severely affected and are either house or bed bound; they are invisible and for the most part, they are ignored and abandoned to their own fate.

A major Report by the charity Action for ME [ref 13] found that 77% of sufferers experienced severe pain; over 80% had felt suicidal as a result of the illness; 70% are either never able, or are sometimes too unwell to attend a doctor's clinic; 65% (nearly two out of three) have received no advice from their GP on managing this illness; 80% of those who are currently bedridden by ME report that a request for a home visit by a doctor has been refused; many people do not receive state benefits to which they are clearly entitled."

-- E.P. Marshall, M. Williams, M. Hooper
'What Is ME? What Is CFS?', [ref 14] --

The Importance Of Acceptance ...

The loss of your lifestyle 'pre-ME/CFS' can make it all difficult to accept.

But if you refuse to accept that you do have ME /Chronic Fatigue Syndrome ...

... you may risk finding yourself in an even worse condition in no time at all.

So how do you deal with it?

Well, your first stop should be to sign up to the FREE popular Sleepydust Emagazine. You'll receive a free newsletter emailed straight to your email box...

...packed full of tips for dealing with your Post Viral Fatigue Syndrome, M.E., Chronic Fatigue Syndrome and Fibromyalgia.

Click here to sign up!

Living With ME /Chronic Fatigue Syndrome

Please don't lose hope. It is possible to live within the boundaries of ME /Chronic Fatigue Syndrome ...

 

"I think it is so important to "live" in spite of the strains that this illness makes on our health. I am trying to learn, in my good times, to use my 'energy account' to do things I enjoy, and not just "catch up" on the work that never gets done on the bad days.

This lesson is rather new for me, and my house is getting impossible. My husband is complaining about too many "planned over" meals, but it is feels good to "have a life" too.

I have learned that there ARE good times even though I have CFS, and if I wait, there will be more good times. I think someone on the Sleepydust Forum said that CFS teaches us to be very, very patient. How wise they are!

Thank goodness there are people here [at the Sleepydust Forum] to whom we can moan when times are bad. They remind us that others share the same feelings and problems, and that they do cope. They remind us that the crash will pass, and even if it comes again, in the meantime, there are small things to take pleasure in, and be grateful for.

End of my philosophy for today.

Blessings all...

Simonne"

-- Simonne, ME/CFS Sufferer & Regular At The Sleepydust Forum --

 

"(...) Then, often, comes acceptance, clawing back, clever management and, finally, some degree of control over fluctuating symptoms and energy levels.

Intuitively, they work at maintaining the delicate balance between doing too much and not doing enough, juggling rest and activity, until they can maintain an equilibrium of health.

People with ME become skilled harvesters of energy, accepting that they may never reach previous levels of physical and emotional stamina but nevertheless finding satisfaction in their lives.

Less becomes more.

For most people, ME means a different way of living."

-- Dr Lynne Michell, Shattered, pXXVI-XXVII --

 

There are hundreds of thousands of people out there who are living with ME /Chronic Fatigue Syndrome and who are coping well.

And YOU can too.

What's more, recovery is possible - so you do have hope! (More...)

Getting In Touch With Fellow Sufferers...

Getting the right support is extremely important. Many sufferers find it helpful to talk to others who are going through the same thing.

You are more than welcome to join us at our online community over at MySpace - a friendly little online community of ME/CFS and Fibromyalgia sufferers. It has been a wonderful source of friendship and support for many. You can visit our online community over at MySpace here...

You can also read other sufferers' personal experiences and stories here...

A great insight into the lives of ME/ Chronic Fatigue Syndrome sufferers is Lynn Michell's book, Shattered: Life With M.E.:

"I am reading 'Shattered' by Lynn Michell at the moment.

It tells of the different experiences that many ME/CFS /PVFS sufferers have to go through.

It certainly makes you feel that you are not alone in your battle with both the illness and the scepticism that some of the health profession and society still hold.

A good read."

-- Claire, Sleepydust Editor --

Click here to read a review of this book...

 

 

Category: Living with ME/ Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome

Back to top