When tiredness stops your life

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Chronic Fatigue Syndrome (CFS) is like a ghost that marauds around “real” illness. Though it’s recognised as a legitimate medical condition, the stigma that sufferers are dramatising, even imagining, the symptoms still prevails today.  

In my early 30s I was bedridden with CFS for two and half years. What preceded this period of incarceration was an unrelenting fatigue that dogged my days making it difficult for me to work and carry out simple domestic tasks. With my health declining, I moved from Melbourne back to the country and into my parent’s home due to an increasing need for physical and emotional support.

By Christmas Day 2001, I could no longer walk the twenty metres it took to get to my parent’s kitchen. On the occasions that I did need to leave the house for doctors’ appointments, my mother would transport me in a wheelchair because I was too weak to ambulate to and from the car. On my worst day suffering CFS, I couldn’t walk the five metres that I needed to in order to use the toilet.

It’s approximated that around 90,000 Australians currently suffer with CFS (otherwise known as Myalgic Encephalomyelitis). For those unfamiliar with this condition, CFS is associated with prolonged periods of extreme fatigue with symptoms that may include muscle aches, flu-like symptoms, headaches, difficulty concentrating and sensitivities to chemicals. One of the most notable characteristics of CFS is that rest does not abate the symptoms. Research isolates that four out of five people afflicted with CFS are women citing hormonal factors, viral infection and general life stressors as the possible cause.

Thirteen years on and now recovered, I notice that little progress has been achieved in terms of CFS. There’s still no medical test that can confirm a diagnosis, simply a checklist of symptoms that narrows it down to CFS. Second to this, there’s no finite medical cure in existence, only advice on how to manage the debilitating symptoms. Recent reports highlight a lack of government funding for this state of inertia with only one significant medical research project ever being dedicated to progressing our understanding of CFS.

Due to its ethereal nature, CFS is known to engender a lack of empathy from people. As a result, the kind of treatment sufferers can expect borders on belligerent. I know a number of sufferers who now have fractured relationships with their family as a result of their family’s inability to accept that CFS is a genuine condition. Unfortunately, these are not isolated cases.

Fortunately, my family were incredibly supportive while I was unwell; nonetheless, some of my friendships were adversely affected by CFS as well as I had to deal with this kind of attitude: (as per verbatim)“Karla should just get off her arse and do something with her life”.

Even now, it’s difficult for me to get people to understand the extent of debilitation that some people experience with CFS. In my case, I wasn’t simply bound to my bedroom; I also couldn’t read, watch television or listen to music because I would feel sick and exhausted within seconds of performing these activities. To sit up and talk with visitors was limited to minutes as opposed to hours. One woman who I met at a doctor’s clinic told me she had to sleep on the floor because even “gravity felt too heavy”.

The lack of understanding that surrounds CFS only compounds the isolation and loneliness that sufferers experiences. When I was bedridden with CFS, I used to play a game of identifying animals in the shapes that I saw in the pinewood on the ceiling of my bedroom just to expend time. I also cried every day for two years while the seasons outside my window functioned as the only tangible mark of time for me.

As sufferers spend days and months, even years, tending to the most basic of human needs such as eating and hygiene, friends and family inevitably move on with their lives achieving career milestones, enjoying relationships and starting families.

Traditionally recovery from CFS takes ten years. For women suffering CFS in their prime biological years, the slow recovery rate can impinge dramatically on a woman’s capacity to bear children and assume responsibility for their welfare. For women who experience extreme debilitation, like myself, the choice to have children is taken away for a large period of time. This is probably one of my few regrets in life.

It took me a decade to rehabilitate back to full health with the assistance of an integrated medical practitioner. And though it would be easy to feel bitter about the decade I lost to CFS, mostly I feel incredibly grateful that I have regained my health which I know is not afforded to all who are afflicted with illness.

I only hope that the mystery that surrounds CFS is dispelled in time so that the debilitating symptoms and associated shame of suffering CFS is altogether eradicated.

38 comments

  • In 1991, in the aftermath of a nasty European flu which had been medically treated with many serves of antibiotics, I too was struck down by CFS/ME. It was a condition which dragged on for 4 years until I finally found an experienced naturopath who helped me to unravel its multiple causes. Those were the days when women were being encouraged to 'have it all' and CFS/ME was called 'the Yuppy Flu'. Sufferers were mostly regarded as neurotic malingerers by doctors, family and friends - a situation which added greatly to my physical and emotional distress. The fact that I went from a very fit/active person to one who could barely get through a day with work and a young child was of little interest to anyone, including the many doctors I consulted. Having acted as a healthcare advocate/sleuth for others, I decided to act as my own advocate/sleuth and I eventually came to understand the many conditions which had contributed to my particular grab bag of symptoms, otherwise known as a syndrome. Fortunately, I am one of those who recovered with a whole new respect for my physical limits and how my body works.

    Commenter
    Suzanna
    Location
    Gladesville
    Date and time
    January 09, 2013, 9:43AM
    • I'm always glad to see articles like this exposing what sufferers of 'invisible' illnesses go through. My brother had CFS for two years in his early teens and had to deal with the stigmatism as well as jumping through all the usual medical hoops in order to get a diagnosis. My best friend also lost 3 years of her teens to CFS. I also have an invisible illness, Fibromyalgia, and in the seven years it took to get a proper diagnosis, I was told by friends and family to not let it get in the way of what I wanted to do (easier said than done), and by one rheumatologist that, despite being 17 and unable to walk, my joint pain was all in my head. So thank you Karla for sharing your experiences, because it gives me hope that one day people will be a little more understanding about illnesses like CFS and less quick to tell you to "get off your arse and do something with your life" because sometimes it isn't that easy!

      Commenter
      FMS
      Date and time
      January 09, 2013, 9:50AM
      • yep, I've got FMS and it's debilitating. people only see me on good days. it's so unpredictable when having a serious attack. You don't even have the energy to feed yourself. the brain fogs etc, etc.
        Coupled with Ross River fever a couple of years ago was the worst I've ever felt in my life. bedridden, couldn't even get to the shower let alone the DR. Finally diagnosed with Ross River, the DR said I'm a double edged sword.The more these chronic diseases are in the spotlight the better.
        and yes it does affect relationships, I no longer speak with my brothers, expecting physical demands to care for my elderly parents (now dec) that I just physically couldn't do. expecting me to drive 3 hours when I couldn't drive 10 minutes most of the time.
        I'm having one of 'those' days today, after a fortnights holiday, I've fallen in a heap! sounds crazy to one who doesn't suffer I expect,but that's how it is.
        My empathy is to all who have these insidious conditions which are invisible to the public, family and friends.
        Finally there is research but inadequate treatment and not enough specialist pain clinics. For me it's a 4 hr drive to visit one.
        My PC and the garden have become my essential best friends and cures.

        Commenter
        A country gal
        Date and time
        January 09, 2013, 2:31PM
    • Karla, your story is quite devastating. I hope it opens the eyes of those who dismiss CFS as a myth or a lazy persons illness. As someone who suffers from its sister illness - fibromylagia - you have my empathy. Thanks for sharing.

      Commenter
      om
      Date and time
      January 09, 2013, 9:57AM
      • While I don't have CFS, I have some idea of what it's like to live with severe fatigue. I've suffered with fatigue since my early 20s (I'm now 40). My fatigue isn't as severe as the author's, but it's bad enough that some days I can't think clearly or concentrate. Sometimes having a simple conversation is a struggle. I've had quite a few sick days because I'm too exhausted (mentally and physically) to function at work. There's plenty of days where I drag myself to work and do the best I can despite feeling like I'm stuck in that twilight zone between being asleep and being awake.

        I think part of the problem with the lack of sympathy for sufferers of chronic fatigue is that most people don't understand the difference between being a bit tired and being chronically fatigued. Everyone gets tired sometimes and usually getting more sleep will do the trick. Not so with chronic fatigue. The amount of sleep I get makes no difference at all. It's hard to 'get it' unless you've lived it.

        It's taken me about 15 years to get close to working out the cause of my fatigue. It looks like it's diet-related - ie food intolerance - but working out what foods/food chemicals are the cause has been a long and frustrating process, and I'm still not there yet. One day...

        Commenter
        Jem
        Location
        Melb
        Date and time
        January 09, 2013, 9:58AM
        • Reading this article could've made me cry; to read something and know that someone out there understands what you've gone through yourself. I was lucky in that I have recovered and was only sick the first two times for around a year (7ish yrs apart) and then 3yrs later again for 2-3yrs, but in that time I experienced lots of people who didn't understand and suggested I just pull myself together. I remember dragging myself to work, my Dad driving me then typing whilst half lying on my desk because I couldn't sit upright and unable to speak coherantly at times, all to try and prove I could still work and function. I too was lucky to have an incredibly supportive family, I can't begin to imagine what it would be like without them.
          Even now everytime I feel really tired or sick I get anxious because I don't want to go through that again, having children would be such a great thing but those close to me and I worry about whether we should in case I get sick again. Hmm maybe paranoia is an after effect :o)

          Commenter
          *M*
          Date and time
          January 09, 2013, 10:11AM
          • Dear Karla
            Thank you for sharing your journey.
            I am now in my sixties and I lived through CFS for fifteen years beginning in my early thirties when we moved to Sydney with two very young children. My husband was very supportive but working long hours and we had no family here.

            It was impossible to get any answers from the medical profession but very possible to have every test known to man only to discover there was nothing wrong with me. Still I was lying on the couch all day and just barely managing to look after my family.To this day I cannot tell you how that hourglass at the beginning of Days of our Drearies used to just about send me into a panic attack.
            I relate to so much of what you expressed and it would be nice if no one judged until they had walked a mile in your shoes - or in our cases lied on our couches or beds.
            I did like you eventually recover and i think it's really important that people like yourself tell your story to give hope for those going through this little understood 'twilight zone' experience.
            I'm sure there are others out there who have read your article and would love to say 'thanks' but as you know -they just don't have the physical or emotional energy to respond
            Mum
            .

            Commenter
            Sss
            Date and time
            January 09, 2013, 10:19AM
            • It is an amazingly common condition but no-one dares talk about it because of the way sufferers are regarded. So thanks for writing about it here.

              I was diagnosed with CFS twenty years ago (in my late twenties) and although my health is much better than it was, i still have problems. Every doctor has a different view, and i am sure it is often the label given to conditions that doctors don't understand. When i first became sick i began suffering from allergies and intolerances to food and chemicals, and had all sorts of strange symptoms, along with constant unexplained exhaustion. It was only through years of learning to manage my condition that i was able to improve my quality of life.

              My life is still limited - I can't eat many foods, I can't work full time, I can't socialise much, I have to limit the energy i use (otherwise pay the price for a long time), i am prone to deficiencies in vitamins and infections - but my life is much more liveable now. Do I have CFS? I don't know. I was also diagnosed with Lyme disease, but again that is controversial territory and not considered to officially exist in Australia. Another doctor told me my symptoms could be caused by a bug picked up overseas, but with so many bugs to choose from they wouldn't know which ones to test for.

              Many people have health problems that cannot be properly explained or diagnosed, but as a society we seem incapable of empathising unless the diagnosis is scientifically clear. But unless money is invested in research, and we start talking more about it, it will be a long time before science can understand and start to address the conditions that are destroying many lives.

              Commenter
              Lui
              Date and time
              January 09, 2013, 10:28AM
              • You probably know about this already, but thought I'd mention it anyway...have you tried the Friendly Food/FAILSAFE diet? It's an elimination diet that helps identify what food chemicals trigger your symptoms - artificial additives as well as common naturally occurring chemicals in food and other products such as medication and skin care (eg amines and salicylates). The array of symptoms caused by food is VAST.

                The first time I attempted the diet I was amazed how many niggly little things that I never would have associated with my diet actually improved or disappeared altogether - like the stiffness in my ankles when I got up in the morning. That was the first time in more than 10 years that I've woken up before my alarm actually feeling awake.

                It's a very difficult diet to get through though. I've made numerous attempts but haven't yet completed it. My first few attempts failed because breath testing indicated I wasn't a fructose malabsorber, but it turned out that I am.

                Anyway, here's a link for anyone who's interested http://fedup.com.au/

                Commenter
                JEM
                Location
                Melb
                Date and time
                January 09, 2013, 11:11AM
              • no i haven't tried that diet. Many thanks for the link. But I did find this diet/research useful some years back: http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/salicylates.html

                And i think the one you are suggesting is similar to the low foodmap diet that has helped numerous people diagnosed with CFS: http://shepherdworks.com.au/disease-information/low-fodmap-diet - i have already eliminated most of those food from my diet.

                It is such a maze that people have to try to find their way through. Some doctors I have found incredibly helpful, others offensive, and i'm not sure things have improved that much in 20 years.

                Commenter
                lui
                Date and time
                January 09, 2013, 12:31PM

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