Jacinta - Working with Post Viral Fatigue Syndrome, Melbourne, Australia

by Jacinta
(Melbourne, Australia)

I have had Post Viral Fatigue Syndrome since early 2004. I first contracted Hepatitis A which was left undiagnosed for too long (my doctor at the time was hopeless).

I was incredibly ill, basically unable to eat and completely bedridden for about two months. I went back to work too soon, suffering from what a lot of CFS sufferers seem to have, the guilt of being ill and pressure to perform.

I continued to have short but intense relapses of debilitating fatigue, nausea, stomach pain and dizziness. I thought my liver was still recovering from the Hepatitis A - I went to a few doctors who did blood tests, urine samples, faecal samples, everything and always ended up coming back to me saying, "Well, there's nothing wrong with you".

It always ended with me getting the look of disbelief and dismissal. Clearly after never being ill, I had suddenly become a hypochondriac overnight.

I continued to have these bouts, varying in severity. Possibly more dangerously, I began to feel very depressed, incredibly anxious and unable to cope with social interactions, stressful relationships or situations. I went on holiday at the end of 2005 and pretty much had a nervous breakdown of sorts. I thought I was emotionally unstable and had no idea that I was actually ill.

I went back to work - my job was in a high pressure environment and required long hours - there was always something to troubleshoot. In May 2006 I got the 'monster truck flu from hell'. We were also having a major crisis at work, so I just drugged myself up and dragged myself into work. I was beside myself with exhaustion.

After that, I never fully recovered. I just felt like I was running on empty all the time, waking up exhausted, coming home feeling like I'd run a marathon. This continued until October when I collapsed. I didn't leave my bed for 3 weeks.

I was referred to an Infectious Diseases specialist who also did every medical test, X-rays, ultrasounds, blood tests for HIV, everything. Once again, he came back to me with, "Well, there's nothing wrong with you". I would have left there that day with no conclusion again, but by then I had done research on Post Viral Fatigue Syndrome / ME/ Chronic Fatigue Syndrome and knew that it was it. In the end, I pretty much had to diagnose myself.

Because it was left undiagnosed and untreated, I have relapsed into a severe stage of ME/ Chronic Fatigue Syndrome. I had to leave my job, I have been housebound and unable to look after myself. I have dealt with severe depression and suicidal thoughts, crippling insomnia and chronic back muscle pain. I have had to withdraw from some of my family and friends as their reactions and lack of understanding deeply affected me.

From this, I am happy to say that I have turned a corner.

This began to happen when I fully accepted and embraced my illness. From this, empowerment came. I realised that I was the protector and the support system for myself. My body wanted me to work in unison with it, become friends with each other.

I have found a kinesiologist who has worked wonders - healing is happening on all levels, physically, mentally and energetically and it is under my power.

I still have a very long way to go, but I just want to say to those of you out there who are in the depths of ME/ Chronic Fatigue Syndrome and feel like you will never feel well again, there is a way out. You can get better but you will never be the same...

You will have a new respect for your body, for yourself and a deeper understanding of yourself. ME/ Chronic Fatigue Syndrome has given me the opportunity to completely reconstruct myself and my life patterns and it is turning out to be a liberation.

I wish you all the best and know that you are not alone. We're all in it together!

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Jacinta - Working with Post Viral Fatigue Syndrome, Melbourne, Australia

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The void
by: James

Hi Jacinta,
I relate to what you say. I have post viral fatigue after contracting Ross River several years ago. I also suspected some liver problems and after doing a few liver flushes my brain fogginess cleared up completely; though the fatigue remains.

After trying everything in the health food shop I also had to accept my condition and manage my energy levels for myself. Because of the enforced inactivity, depression often arises and I've also learnt to work with this instead of against it. I've found that depression itself can be a healing mechanism; for me it voids my mind of worries, beliefs, and self-imposed expectations.
The trick is not to take the undoing process too literally or personally.

Thanks for sharing your experience.

Mother of 15 year old CFS sufferer
by: Linda Melbourne

Hi Jacinta,

Thankyou for sharing your story, it's great to hear about a positive outcome. My 15 year old son has been diagnosed with CFS and is on a rollercoaster of emotions. Some days he feels quite good and will be positive and then will wake up feeling awful and unable to attend school at all. Currently he only attends two lessons out of six per day and will often need a few days off.
He was an active boy, playing A grade hockey and rowing. I feel as though his teenage years are being taken away from him.
His paediartrician has referred him to a Peadiatric RehabI. program at Monash Hospital.I will try anything!It is fantastic to hear that you have come through the other side. Best wishes for your future.

Keep positive ...
by: Chris (NZ)

Hi Jacinta

I really feel for you having to struggle with the illness for so long. I was lucky to be diagnosed early with Post Viral Fatigue Syndrome (after 5 weeks of being ill) but that was only by luck as my usual doctor was away and I got a locum. That was a horrible 5 weeks, and then the following month - coming to grips with it not much nicer.

It's now nearly four months into it for me and while I still have a way to go, I feel I am coming down the mountain. There is still so much support needed for doctors and people who suffer from this illness - you can certainly feel alone at times. Thank god for friends and family.

For me there is some personal fulfillment that while I can't work, I have researched and implemented my own rehabilitation plan that seems to be helping a lot. I think regardless of what the future holds, I am richer for some of the things I have experienced since being ill.

Good luck on your recovery Jacinta

Thanks for your feedback
by: Jacinta

Hi everyone,

I just want to thank all of you for responding to my story. I know we all feel very alienated at times by this illness - I know I do. Support for me has been disappointingly thin on the ground and other people just don't understand that every day is a challenge, to retain positive and proactive thought and to be able to fully concentrate on recovery and taking care of yourself without being made to feel guilty for doing so.

Even though my illness is nothing new to me at this stage, it is still crucial to me to talk to other sufferers, hear your stories and receive validation of my own experience.

To Anonymous - I am so glad that I could be of some comfort and hope to you. Your response really affected me as I know where you are at the moment. All I can say to you is - it is a long difficult road ahead. Progress is not linear - you go back and forward, sometimes you know the triggers for regressions, sometimes it makes no sense and can be very confusing and depressing.It is up to you how you choose to approach this new element in your life. Personally I chose to see it as the greatest life lesson that I will receive, an opportunity to liberate myself from toxic notions, environments and people. There is no greater opportunity to fully embrace yourself and what is important to you than through an illness, as all that is ultimately irrelevant is stripped away and all that matters is then exposed as worth fighting for and protecting.

Anyway, thank you to all of you for your responses. I appreciate all your positive words and I wish you all that I wish for myself.


In it together...
by: ed

Dear Jacinta

When I read of your experiences and those of others I feel them inside in a way unlike any other.

We are all different with various symptoms and yet I have this strong sense of shared experience and understanding. I wonder why I feel this so strongly and wonder if it is the disbelief of others, the sense of exclusion from 'normal' social interaction.

I hear what you say about embracing the illness and I struggle with the conflict between what people want to hear and how I feel. I wear a mask of social acceptability and on the occasions when I feel able to let it down I am shocked by the difference in who I am and what I feel.

On some level I've known that my Chronic Fatigue Syndrome was about changes I needed to make since early on in the illness and for me this has underpinned my gradual return to Health.

With best wishes, Ed (uk)

Thank You
by: Anonymous

I have just been diagnosed with Post Viral Fatigue Syndrome... today infact. I am only 16 and am still slightly shocked at what is happening with me. I have no energy to do anything. However after reading your story it has helped me loads. I have a better understanding and don't feel alone. So thank you very much, you have helped a lot.

Still trying...
by: Bill

I have Fibromyalgia and Chronic Fatigue Syndrome. I am a 73 year old male, who has had all the symptoms since about 1956, although they were relatively mild at that time.

So far I have had no success with any treatment of any kind, although I have paid out thousands to so called practitioners, for nothing.

I only ever let the problem interfere with my working life once, when I was put off work for almost 2 years.

I wonder how many people out there are in the same situation and had the problem for as long. I have survived now through Coronary Artery Bypasses, TIA, Stents, spinal surgery, nasty bugs picked up in hospital, Pneumonia, finally pacemaker surgery and have been told by specialists so often that I am just depressed. Now it is becoming a legitimate problem there still seems to be little hope of any improvement that would give some time free of everything.

Good luck to anyone who believes they an beat it. If there is anyone who wishes to discuss cause and effects I would be interested in listening.


Coping with M.E. / Chronic Fatigue Syndrome
by: Lillyann

Hello Jacinta

While reading your letter, I was nodding in agreement throughout. You certainly do find out who your true friends and family are when you have this invisible illness, don't you?

I have learnt to accept this illness and in a way, I see it as a gift. I have learnt to appreciate life more now than I ever did before. Everyday is a constant battle but self belief and love will see us through you. You take care now.

Lots of respect to you

Thanks for the insight. You are sooo right.
by: Debbie.

I agree so much. You have to accept that you have a chronic illness and that you must REST. I know it is hard but you cannot recover properly if you do relax and come to terms with M.E.

I hope everyone with M.E. can be happy and feel that they are still a valuable member of the world. I have hard days and sad days but mostly i still love my life even though i can only live a fraction of it.

Peace and love to you all.

Debbie xXx

Getting in touch with your inner self
by: Cam

Hi Jacinta

Thanks for sharing your story, and I'm glad to hear things are looking up for you, which is in itself very empowering.

I'm a big believer in the holistic and spiritual approach. The empowerment step you have just made can be one of the most elusive to get to from the dark depths of suffering and 'why me' feelings, so well done! Once you accept that your suffering is a part of you at this time, you can embrace it, listen to its message and use this to help heal youself and as a result make you a better person.

I believe I'll look back one day and be glad that I had CFS as it forced me to change for the better even if it was a long road. In fact, I think this way already, but I still have a lot of life lessons to learn and repressed emotions to clear yet. Its all about the journey anyway, not the destination... right?!

I think our body wants us to slow down enough to listen to what it has to say to us. Many of us aren't aware, but our body / soul is constantly trying to communicate with us, and often discomfort results until we finally open up to and honour our true selves. We were not brought up to think this way, so it can be very foreign to us.

Meditation is a great way for most people to sit still, clear most of your thoughts and see what comes through. Sounds, images, 'movies' & feelings are all valid. If like me, you find it difficult to get in touch with your inner self, there are plenty of very good intuitives around these days to translate the messages for you.

Kinesology is another way to allow your body to communicate its truth to you.

Anyway, I'd better stop as I'm aware some of this is difficult for some people to believe in as it was for me a few years ago when I thought my condition was just bad luck. As always, take what resonates, and discard the rest.

Jacinta - thanks again for sharing, and as they say, if anything will get you through its having the belief that you WILL get through. And you all will! Much love.

Cam (NZ)

So glad you see hope!
by: Anonymous

The misunderstanding you've received from others is so familiar. Thank you for sharing your empowerment.

well done
by: Barbara

It's always great to hear new stories for people to read. At least you feel you're not the only one.

Inspiring & Thought Provoking
by: Sleepydust

Hi Jacinta

Thank you so much for your inspiring story!

I love the way you described how you have now accepted your illness and how your healing is happening on all levels. This is something that I myself, am very passionate about. As a ME/ Chronic Fatigue Syndrome sufferer, I have found that a holistic approach (i.e. viewing your body, mind, and soul as a whole) can be extremely helpful.

Thanks again Jacinta for sharing your story with other sufferers.

Wishing you all the best in health



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