CFS Awareness Day

Tuesday, 12 May 2009

I get fed up with the crazy amount of awareness days the world has but this one, CFS Awareness Day, is closest to my own heart. I suffered from this illness for six years and it changed my life forever.

I prefer the other term for CFS: myalgic encephalomyelitis. Gives it that extra weighty bite of seriousness :)

Richard Stubbs interviewed Marg Purcell today on radio 774. She contracted CFS two months before I did, in April 1999, and is still sick. She was an athlete before she fell ill. Me, I'm one of the lucky ones. My CFS started around June 1999, when I contracted glandular fever which just never really went away. From memory (hilarious in-joke) it took me a couple of years to get a diagnosis. CFS is a bit of an empty diagnosis to have though. And that's if you can get one in the first place. Unless you hit upon a good doctor, you will have to go through the hell of trying to work out what is wrong with you while the GP who sits across the desk from you quite possibly believes there is nothing wrong with you that an antidepressant and a trip to the psychiatrist cannot fix.

This is where my extreme mislike for the medical profession began :) Doctors are as caught up in the system as anyone. To think that there are still GPs out there with this view after all this time shows how elephantine the system is when it comes to changing perceptions and keeping up, chaps.

In the interview above, one caller said they worked in a 12-doctor clinic where none of the doctors believed CFS was real. Well, I can tell you that the fatigue, muscle aches, flu-like feelings, brainfog, memory lapses, immune system suppression (but in my case, elevation, which meant continual painful golf balls on the side of my neck, ouch), nervous system disorders, autonomic nervous system stuff-ups (causing things like inability to regulate body temperature), adrenal overload, spending all the next day on the couch because you walked for half an hour today, anxiety, digestive problems (causing bloating), regular rapid heart beat and light sensitivity are very real, thank you very much.

The CFS Awareness Day I remember was where I agreed to help man (woman) a stall in a shopping centre. One woman bobbed up to me, listened to me talking about what CFS was, and then trippingly and gaily said, "Oh, I think I might have CFS. I'm so tired all the time!" After which she flubbered off for a bout of shopping.

Which left me feeling pretty good because hey, feeling tired is actually a pleasant, relaxing feeling. But the tiredness that accompanied CFS, at its worst, felt like the marrow was leaching out of my bones. At my very worst, having a shower tired me out for a whole afternoon.

I am so grateful that I recovered. It takes an iron will and determination to keep trying that extra thing. I was one of the lucky ones whose CFS was most likely precipitated by bacterial/viral infections (like rickettsia, for example). It took me a year of rather psychologically hellish ongoing antibiotic treatment to clear those infections up, and then once I did, my body was able to slowly begin healing itself (along with squillions of bucks' worth of nutrition and supplements and stuff once my body began being able to absorb them properly).

I can't believe that people still trot out the line that CFS sufferers are malingerers. I understand the misunderstanding. I don't understand why it still exists. For one, it is often the go-getter types who contract CFS to start off with. Marg Purcell was an athlete before one day she suddenly felt unwell. From there on, she has never regained her health.

I am of the foolhardy and pigheadedly stubborn belief that many people are able to recover from CFS. There must be a stubborn insistence on trying new things, new areas, in learning to listen to what your body is telling you it needs. It is like a full-time job with no accolades. It is difficult to tune into our bodies in this society when we are healthy. We are trained in many ways to switch off. Many healthy people are unable to discern even what their guts are telling them, and often we treat the symptoms instead of the underlying concerns.

To tune into a body whose brain function is causing you to feel as if you are constantly in an out of body state is extremely difficult. Many people give up on a cure when they have been ill for so long and seen so little results. Most realise that they must learn to accept their condition - which feels like accepting the unacceptable. It took me years to learn to accept. I strongly believe that acceptance of the illness is a necessary road toward health. There is no way of living with CFS aside from living in the reality of the present, of the good, small things, as Margaret mentions - the great cup of coffee. This is how the approach must be made toward getting well, also. The small, slow, tiny steps.

Perhaps CFS really is a life sentence for some people. Whichever way it is, it would be a hell of a lot easier if you broke out in spots on your really bad days, like Richard Stubbs said, if it would garner a bit more compassion. Because you can't see how people crash the rest of the day after they have mustered up the adrenaline to talk to you. You can look at them and think they are looking good. I do it now with my friend who is still ill. If I didn't know from inside experience how unwell she is, I would probably forget that she is sick. But I do, and I know this - you gotta take our word for it. If I could bottle up how it feels and give you a dose, you really would help people out with this condition, and with compassion. But I can't. You have to just take our word for it.


  1. I am endlessly grateful when I find out that something I self-diagnosed as failure of the will is, in effect, something over which I had no control, a legitimate illness or bodily malfunction. I am pleased to hear that you have recovered from yours.

  2. Thank you for this, which is probably the clearest explanation of ME I've read.

    I am always cheered by the (possibly fictional) statistic that is often quoted that after seven years, every cell in the body has been completely renewed.

    I'm glad you've managed to recover from this debilitating disease

  3. Barbara - yes!! That sort of experience is life-changing in itself, isn't it? Makes you much more willing to validate yourself and what you are experiencing rather than just simply listen to that (stupid) voice in your head saying it's just you and your laziness. I'm glad you recovered from yours too (I presume) :)

    Tess - I like that statistic too and it is one which occurs to me often, even though in another way it makes little sense. but yeah, me too, I'm cheered by that too :)

  4. This is how I feel about fibromyalgia, a lot of people don't believe in it. I am thankful mine is not worse, but its so unpredictable, it will flare up at the worst times, sometimes i just can't get out of bed. But I am not nearly as bad as so many other people I know!
    CSF and Fibro are such close cousins.

    I am soooooooooo glad you you are better!

  5. Thanks, BBQ! Oh, yeah, CFS and fibro are definitely first cousins.

    Sheesh, we have so many commonalities - taste in men, taste in chronic illnesses :D Hah.

    I am thankful yours isn't worse too but still, having it at all would be bad enough. I hope you look after yourself during flare-ups. It's so easy to be horrible to ourselves.

  6. I'm so glad you are regaining, or have regained, your health. Your term "CFS land", that you used in your earlier bloggings, sounds truly like a different existence from feeling healthy.

    I'd like to pass this you mind? And, I'm going to check out that book over there -->. The "Natural Capitalism" one. ;-)

  7. No, of course - pass it on, Jennifer.

    And you were the one who recommended Natural Capitalism to me, actually :)

  8. Thank you for writing this, Sue. My life turned upside down almost seven years ago, with chronic pain, & much later, a diagnosis of fibromyalgia. Cymbalta has an ad out that says in one line, what I would try & express to friends "With Fibromyalgia, pain is the price you may pay for almost everything you do." There are many in the medical profession that still don't believe that.

    I love hearing part of your story, and hearing how your persevering paid off.

  9. Nothing like chronic unbelieved illness to test your own sanity is there, Sherry? Thanks for the feedback. I am on a CFS email list and posted the link there. I have had about 6 or 7 people come and read it and was doing my usual sort of nail-biting, wondering if writing about my recovery would give people hope or make them feel worse? I would hate to think that. But then, I remember when I was ill, reading and hearing about other people that had recovered was encouragement to me, so I guess I just have to go with that, huh.

    It really is so difficult. So many people out there suffering with this sort of thing. So difficult to share with people when sometimes it becomes easier to just shut up and suffer in silence, isn't it :(

    I hope you and BBQ both make your way out of fibro land.

  10. It is great to see more people promoting awareness about M.E. Having lived with it for 6 years now and spending most of my 20's asleep I have a lot to catch up on. To think 6 years ago having a morning shower would put me back in bed and now I'm able to study health science at uni and work a bit, I have to keep reminding myself how far I've come, especially when I thought life was over. It's important to give people hope, a lot of other peoples articles helped me. Thank you, you're all doing a great job.

  11. I recommended Natural Capitalism? Weird...maybe my 14 year old is right, I really am losing my mind. ;-)

  12. Hi Kristina - wow, it definitely sounds like you have come a long way. It's funny, isn't it, the way you have to keep reminding yourself how far you've come? Thanks for the feedback. It feels funny writing things that give people hope because part of me feels like, "Who am I to say these things and give some people false hope who may never get better?" But that is surely one of the stupider things I tell myself :) Thanks for commenting.

    Jennifer - yeah, you did recommend it, ages ago, I can't remember where. I'm almost positive it was you. So yeah, maybe you're about to go whacko :)


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