The blog of photographer and musician, Kim Ayres

What is Chronic Fatigue Syndrome?

Having lived with Chronic Fatigue Syndrome (CFS – or CFS/ME, as the medical profession now place Myalgic Encephalomyelitis under the same heading) for the past 5 years or so, and blogged about it on several occasions, it’s easy to forget there are people who either don’t know I have it, or don’t really know what it is.

So I thought I’d write a slightly more definitive post about CFS, with the hope that I can also refer others to it in the future when the subject is mentioned again.

The first thing to note about CFS is, it is a label to describe a miscellaneous condition, for which there is no proper diagnosis. Indeed, it is handed out precisely because all the usual tests haven’t shown anything wrong. If something had been revealed – e.g. sleep apnoea, iron deficiency, underactive thyroid or wheat intolerance – then that would be the diagnosed illness.

In brief, if the doctor says you have CFS, he or she really means “we accept the fact you are excessively tired, but don’t know why or what to do about it.”

So CFS is a description rather than a diagnosis

Let us break down this description then.

Chronic
It doesn’t go away. It’s always there and the usual remedies don’t work.

The easiest analogy is Chronic Pain. We have all experienced aches and pains, but usually the body heals and eventually the pain goes away – or we have an operation, which removes or remedies the cause. But for people who have Chronic pain, it never goes away – it is always present.

So the Chronic aspect of this can have a serious, accumulated effect on your mental health.

Let’s face it, even something like a paper cut, would wear you down if the pain never, ever stopped, and was with you for years.

The Chronic part of this is the most underestimated aspect by those who don’t suffer from it.

Rather like chronic Depression – those who have never dealt with it assume it is cured in the same way as ordinary depression – going for a brisk walk, helping someone in a worse of position than yourself, or having a laugh with friends. But the problem with Depression, the illness, is these things don’t cure it. They might alleviate the symptoms for a few minutes, or hours, but then it comes back. It is relentless.

Likewise then, with Chronic Fatigue. A rest might help a bit, but it never actually goes away. At times it is worse, and at times it is less worse. But it is always present, and always impacting on your life to one degree or another.


Fatigue
We all know what tiredness feels like, but most only experience for a temporary period of time. Eventually you fall asleep. Either you wake up feeling refreshed, or you start off feeling groggy, but once you get going (with or without a caffeine boost), the tiredness drops away and you are able to cope with the day.

But when you are tired, everything becomes more difficult – not just physically, but mentally and emotionally too.

When we are tired, when we feel worn out, when all we want to do is curl up on the sofa and nap, then -

- the idea of going for a brisk walk feels insane;
- the thought of doing the accounts or dealing with the finances, makes us want to run away;
- the ability to stay calm and patient when kids are being noisy, or our partner is being grumpy, becomes nigh on impossible.

And we feel we have no reserves to cope if something goes wrong.

Now tie this in with the Chronic aspect – and understand that you will feel like this for days, for weeks, for months, for years. And there is no cure, because no one knows what is causing it.

Syndrome
A syndrome is a collection of symptoms, which vary from person to person in expression and intensity, at different times. So there isn’t a great deal of consistency.

Some people sleep far more hours than normal, while others sleep far less.
Some suffer from aching muscles, others from aching joints, while others are not bothered by physical pains.
Some first get CFS when they are in their 50s, others when teenagers.
Some get severe sugar and caffeine cravings in a desperate attempt to give the body some kind of energy boost, while others lose their appetite completely.

For some it might ease up after a few years, for others it never will, and for others it is degenerative and will only get worse.

Summary
In essence, Chronic Fatigue Syndrome is range of tiredness related symptoms that vary from person to person and don’t go away after rest, and the cause (and solution) is unknown.

Living with CFS
This is what I have to do – live with CFS.

To begin with I put my life on hold while I thought it was just a matter of time before we got to the bottom of it and sorted it all out. Then I was going to return to my life.

After a couple of years I went into survival mode, where I gave up thinking about the future and just concentrated on getting to the end of each day.

Eventually I realised I it wasn’t going to go away, and I didn’t want to just abandon life.

So now I manage the condition as best I can.

I try to pace myself.
I try not to overdo things.
I try to avoid overwhelming feelings of loss.
I try not to allow myself to feel the crushing sense of guilt at the inevitable extra strain and burden it places on those I love the most.
I try to focus on what I can do rather than what I can’t.
I try to involve myself in activities and projects that give my life a sense of purpose and meaning.

I am not looking for sympathy or platitudes. This post was written to hopefully expand understanding on why sometimes it takes longer to respond to emails, phone calls or blog comments than I would ideally like it to.

If this wasn’t enough and you are desperate for more writings about the experiences of CFS, then you might be interested in these posts:


That Sinking Feeling
(gives a brief history of my illness)
Energy Levels (an example of changing energy)
Fatigued. Chronically (the experience of always wanting to rest)
Time and a half (how time plays tricks)

23 comments

Ponita in Real Life said...

I have a pretty good understanding of what you live with, from the chronic standpoint. I have chronic pain. I've had plantar fasciitis in both feet for 12 years now. My feet always hurt, always burn, from the second I wake to the second I fall asleep. I've done every treatment this side of surgery (and the surgery is not very effective, so why bother?). I've learned to live with it. I've learned to take care of my feet. There will never be pretty high heeled shoes for this girl because I simply can't even stand in them, let alone walk. So I understand how you pace yourself, figure out how to get things done without overdoing it. You factor it in to your life, but still you find a way to live life. I have empathy...

hope said...

An educated explanation for a most puzzling condition. I'm sorry you have to endure this...you're such a nice guy! :)

Take your time...we'll be here.

The Pollinatrix said...

Hmm. I came to this post about ten minutes after having watched the movie Groundhog Day, so I hope I don't seem uncompassionate, but the post has taken me in a philosophical direction, considering the meaning of the word "chronic." This word has a negative connotation, no matter what it's applied to, it seems, - maybe because it implies being trapped by time?

I went and looked it up, and the root is of course "time." I'm thinking now that it could sort of be defined as "time-ish." Which I see as the opposite of "now-ish."

I don't think I've ever known a human who did not have something chronic they felt trapped and hindered by. Which is not to diminish the difficulty of your or anybody's condition - just the opposite. I'm considering all this because I'm ruminating on the possibility of experiencing something fully that is in fact chronic without feeling trapped by it. How to experience life as now-ish instead of time-ish, which, from the gist of your post, seems to involve acceptance, self-forgiveness, and nurturing a sense of purpose.

debra said...

(o)

Carole said...

This is a great explanation of CFS. I have a couple of friends sho struggle with it and are almost embarrassed to tell anyone for fear they will be ridiculed. I am going to direct them to this post. A very succint and honest defination.

Mary Witzl said...

I have an idea what CFS might be like, and I do sympathize.

I've got chronic pain from arthritis. I can get rid of most of it with medication. The only problem is, then I end up with chronic indigestion, so I put up with the pain. My pain isn't agonizing, and I suspect it isn't as bad as Ponita's fasciitis (I once knew someone who had that and she really suffered). Mainly, it's just niggling and miserable, worse on some days than on others.

Part of me won't accept that it will be with me forever, no matter what the doctors say. I'd love to go back one day, have an x-ray, and see their astonished faces, "My God, you're right -- it's gone!"

Nechtan said...

Its a great explanation you give there and especially about the ambiguity surrounding the diagnosis. Most people I have encountered fall into two types- those that embrace the label as an explanation of their symtpoms and those who are continually unsure what it means or if it exists at all- as a conditions, definitely not the symptoms.

I've never been diagnosed but it has been suggested a few times. I have anxiety problems which make my world small and in the lead up to this I was fatigued constantly and out of breath quickly- still am. But its more an agitated tiredness than tiredness others experience which may be down to frustration.

It was really good to read this post. I think its a really honest assessment and from someone who is constantly fatigued I know how draining it can be. I did like your outlook on how best to manage it which I hope will inspire others too.

All the best

Nechtan

Kim Ayres said...

Ponita - sorry to hear of the chronic pain. I've been fortunate not to get the muscle or joint pain so often associated with CFS/ME. In fact, I tend to think of that as one of the defining aspects of ME, which is why I usually just refer to my condition as CFS. Certainly the ME suffers seemed mightily pissed off when they were lumped in under the CFS category - they felt they were being down-graded and not taken as seriously. Which opens up a whole new can of worms about the attitude of the medical profession...

Hope - I don't know whether I've become a nicer guy, or a not-so-nice guy since I got the CFS. On the one hand I'm more empathetic to those who have to deal with chronic illnesses, but on the other, I'm much less able to help...

Pollinatrix - I can't remember who it was, but I do remember listening once to a Horror Film director who said, the biggest way to inflict fear is not through blood and guts (although that might have a shock value), but to take away any sense of control from the protagonist. It is that sense of powerlessness, unable to do anything to change the situation, that is the most frightening and soul destroying. The Chronic aspect of any long-term condition, taps into that sense.

The only real way to combat it, ultimately, is to find other ways to make you feel in control of your life - mentally, emotionally and/or physically. Whether that is learning meditation or mindfulness techniques, or involving yourself in projects or actions where you can clearly see you can make a difference

Debra - thank you :)

Carole - It can feel embarrassing, because it feels like such a pathetic condition. It's not like having cancer, or losing a limb -it's just tiredness. Trying to explain it to other people tends to evoke responses of suspicion that all you really have is lazyman syndrome or needs-a-good-kick-up-the-backside syndrome. I hope this post makes things a little clearer

Mary - I think this is where the "chronic" aspect is so underestimated - not just for others, but for ourselves. We are not necessarily experiencing something that no one else has felt. On the contrary, we all know what it feels like to have pain, feel depressed, get heartburn, feel tired etc, but we have all experienced getting over it. And because we are used to the idea of it being temporary, we find it very difficult to get our head around the idea of it being constant. So we often have just as hard a time accepting it, as sufferers, as do those from the outside.

Nechtan - there is a big problem with trying to figure out whether it is a physical condition, or a mental condition with a physical expression of it. Whether our experience of Depression, Anxiety, Fatigue or even some forms of pain, are physical or mental in origin, makes no difference to our experience of them. It might make a difference in how they are cured or managed, though.

However, there is a terrible lack of understanding in the wider population about mental health. So we often end up with a huge sense of guilt associated with our condition, as though it is our fault and all we have to do is get our act together and stop pissing off everyone else. Yet we would never say that about someone who had a clearly diagnosed physical illness.

But the mind is not a separate entity from the body. It is generated, conditioned and influenced by the connections and chemical balances. If the mind or emotions are failing to work properly, it can be just as out of the control of the sufferer as a broken leg. We need help to fix it, and there is nothing wrong in that.

Pat said...

"I try to pace myself.
I try not to overdo things.
I try to avoid overwhelming feelings of loss.
I try not to allow myself to feel the crushing sense of guilt at the inevitable extra strain and burden it places on those I love the most.
I try to focus on what I can do rather than what I can’t.
I try to involve myself in activities and projects that give my life a sense of purpose and meaning."

These should be written in tablets of stone. They make excellent sense and, whatever our ailments, are guidelines we all could follow. My heart goes out to you and other sufferers - what ever the complaint.

Synergy Gallery said...

Your management techniques are helpful to us all, I think I need to make a list for my managing with my condition with a set of initials PTSD.

thanks for sharing Kim. x

(this is Katie by the way, again dont know who I'm logged in as google)

savannah said...

(((kim))) just because! ;~)

Scarlet Blue said...

I had a post viral infection after I was diagnosed with pleurisy back in the eighties. It went on for over a year... and although I'd been told I was post viral, I didn't quite understand how long it was going to go on for. I slept a lot... and I mean a lot... couldn't walk very far without needing to sit down... and at one point I thought I had defective contact lenses because I couldn't see properly. The thing is, I didn't realise I was unwell... I thought it was just me being a lazy whatsit. Anyhow, over the years things improved, but I've never really been the same since. I've never felt as exhausted as I was then but I can be wiped out easily. It's only now, with hindsight, that I realise what was going on with me during that phase of my life.
Sx

Scarlet Blue said...

P.S One tip, if you don't already know, is to be very careful with what you eat.
Usual stuff - stick to a very healthy diet and avoid sugar! Says the woman who's just written a nonsensical post about Creme eggs!
Sx

TalesNTypos said...

Ah Kim. I love this post. It's not pretty, but it is practical.

;)

Ron said...

Maybe I have CFS and don't realize it. I am always tired. My body aches. I have to pace myself. I can't take on a whole lot. At least not like I used to when I was much younger. Sometimes I feel like I'm overwhelmed. I read you blog and your activities and it seems to me that you do a lot more than I do. I KNOW I couldn't handle the responsibilities of a family (like you do) and a photography studio and everything else you do. I admire you for all that you do do with your CFS. I try to push myself but I can't push too much or else I feel like I'm going crazy. Maybe I do have CFS. Undiagnosed.

Kim Ayres said...

Pat - I'll get the chisel and start carving... :)

Katie - that's a serious set of initials - I didn't know you had that - ((hugs))

((Savannah)) - always appreciated :)

Scarlet Blue - it is one of those things that's quite difficult to identify yourself. I would never have gone to the doctor if Maggie hadn't been on at me to do so.

Adila - I have other posts about the emotional impact, so I thought it would be good to have a clear, informative one

Ron - Mayeb it's worth checking with the doctor. CFS is only given as a label if nothing else is found. There are all sorts of ailments that can sap your energy. Just be straight with your doctor to keep looking

Guyana-Gyal said...

I remember reading about this in a magazine many years ago.

Your strategy for managing it can be used to manage so many other problems in life.

Kim Ayres said...

I should say the strategy is partly a wish-list - I don't always achieve every aspect of it

Mimi and Tilly said...

Kim, this post explained the condition beautifully. I have the pain and discomfort alongside the chronic fatigue, and after 7 years living with it, can relate on a deep level to the sense of powerlessness and lack of control that becomes deeply entrenched due to the chronic nature of the condition. I think human beings can live with pretty much most things if they have a sense of a time line around how long they have to live with. The chronic nature of the illness takes away this sense of control, leaving a deep sense of vulnerability. And the general sense of "not trying hard enough to be well" that seems to sit alongside ME/CFS is a cruel twist. You have my deepest empathy. Emma (I'll be back blogging again soon, I'm currently taking some time to take care of myself.)

Kim Ayres said...

Emma - I'm pleased you felt it described the condition well. Of course I only have my own experiences to go on, but I tried to write it in such a way it could apply universally to people with CFS/ME.

Glad you're taking care of yourself :)

Aerospice said...

I have only just found your blog. Thank you for putting in to words, what I have been trying to tell people for years. I have been a sufferer for 10 years and find the condition really hard to put in to words.

Kim Ayres said...

Aerospice - by all means copy, paste and print it out to hand to friends if it will help others understand what you're dealing with :)

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