How I got here: A brief history

Hello and welcome to my first post!

I thought I should begin my blogging journey with a short introduction to how I got to where I am physically, incase anyone is interested! I definitely do not want to bore you with too many details and I obviously understand the great difficulties many ME/CFS sufferers face with reading. So il try to keep it short and sweet. I also ultimately want this blog to focus more on positivity, healing and conquering, not suffering. You can read a general summary about me in the ABOUT section and a more detailed description of ME/CFS under the ME/CFS section.

In short one reason I suffer from CFS to such a severity is because I failed to listen to my body for too many years to count, and was also not aware of what these symptoms meant. It was sending me some pretty CLEAR signs that it was struggling, but I ignored them. I guess what was difficult to understand, as a teenager at the time was why I felt  this way when I treated my body like everyone else did. At the age of 16, 17, 18 and so on many things were high on my agenda like parties, new boyfriend, school work and surfing… not healing my body! So I pushed through the symptoms when I could and began a frustrating journey of pushing myself, crashing* then resting/recuperating, pushing, crashing, resting!

*Crash: A sudden, extreme worsening of symptoms after a trigger event which can vary in severity depending on the extent of ones illness.

I now realise my doings did not help, but they were only a contributing factor to this multi faceted illness. The icing on the cake. It is clear now a range of factors caused the onset of ME/CFS; genetic predisposition, secondary predisposition and trigger events. See the ME/CFS page for a more detailed description.

To give you an idea of how my illness developed and incase you are experiencing symptoms and not sure you fit the bill here are some dot points you may relate to.

  • My illness had a very gradual onset initially, but after many years of mild to moderate symptoms including feeling like I was always walking that fine line between my body just coping and falling ill, post-exertional fatigue and flu like symptoms after generally ‘doing too much’, group sports, running, drinking; frequent weekly or fortnightly viral/bacterial infections, loss of stamina, feeling like I was getting a virus most days, there was a dramatic deterioration to severe symptoms after a range of triggers. For many it is a sudden onset, but when they evaluate their life realise it did develop over a long period.
  • I had always suffered dodgy digestion since I can remember but did not know any different. They don’t teach you about the quality and efficiency of your gut function and bowel movements in school. I also did not realise your digestive health was so vital if not paramount to overall good health. Scientists now know 70 to 80 percent of your immune system lies in your gastrointestinal tract. ME/CFS specialists such as Kenny De Meir and every integrative doctor, naturopath, health care practitioner I have consulted with cannot emphasise enough how crucial gut health is in ME/CFS and any chronic illness. There is now a lot of evidence strongly linking poor digestive health primarily with ME/CFS. I am yet to meet a ME/CFS sufferer who does not suffer significant digestive issues.
  • These digestive issues worsened as I moved into my late teens, early twenties with the development of IgG food allergies, leaky gut syndrome, irritable bowel and systemic candidiasis particularly after beginning the pill.
  • My immunity to viruses and bacteria was very poor and decreasing.
  • My crash periods began to lengthen from weeks to months at a time
  • At the age of 16 there was a clear change in my overall feeling of wellbeing after a virus which stuck around for 6 months or so. I managed to do some ‘normal’ activities during this time but the ‘viral’ feeling did not cease and the severity fluctuated with my activity. I now believe it was a flare up of HHV6 which my body could not push into a dormant phase. My overall health never felt the same after this event.
  • I continued to push myself, suffering the consequences and beginning to seek help from conventional medical practitioners and naturopaths without any answers. There was apparently nothing wrong and as the doctors said I was just ‘one of those people that get sick all the time’. What complete, utter bulls#*t!
  • It is also interesting to note that during the ages of 16, 17 and 18 I had various immunisations from the 3 stage cervical cancer vaccine, meningococcall, tetanus and typhoid and hepatitis A and B for South East Asia travel which coincidently coincided with many of my crash periods.
  • By the time I was 19 I was experiencing these crash periods for months at a time 2 or 3 times a year and beginning to become extremely anxious about the way I felt and the increased severity of my symptoms each time my health took a dive.
  • It was not long after my 20th birthday, after years of trying to push myself through my symptoms and after 2 consecutive weekends of heavy drinking and drowning my sorrows after the breakup of a particularly strange, short lived relationship that my body finally gave up and crashed so severely I have not been able to find improvement thus far! And then things got worse, and then worse and then well, worse. 2.25 years on, trying almost every bloody modality, doctor, health practitioner, freaky healer, diet, supplement known to man I am still fighting for my health back, but finally I feel, instinctively that I am on the right track to recovery. It has not just been educating myself about ME/CFS, health, nutrition, mind, body and soul that has taken so long but truly accepting the position I am in that took a long time, and without that acceptance in place I could not truly heal. I was for a long time looking for that silver bullet, that quick fix to regain my health, but this does not exist. Healing from ME/CFS requires a holistic, integrative approach covering all angles of health and wellbeing. I will elaborate on these approaches in my future posts.

Can you relate to my onset of ME/CFS?

Was your experience a gradual or sudden onset?

I would love to hear readers experiences as one of my goals of this blog is to come into contact with others and their stories.

Feel free to contact me by email if you want to ask any questions

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7 thoughts on “How I got here: A brief history

  1. Hi Amy,

    Your new blog is beautiful and informative – I’m really enjoying it! I’m from Rocky River, Ohio USA. I’m in the same boat and sharing strategies is a great way to make progress!

    I have added your blog to my website ME CFS Blog Roll –
    http://mecfsblogroll.blogspot.com/

    It is a blog site that tracks trending news, blogs and research in ME/CFS. Whenever you write something new on your blog – it will jump your site up to the top – that way many of us worldwide will know when you have a new entry or news!

    Take Care & God Bless,

    Elisa

    Like

    • Hey Elisa. Thank you so much for your kind words. I hope you recieved my email reply. Imagine this journey with blogs! Best wishes, Amy

      Like

    • Hey Sipora. Thanks for finding my blog, I have now found yours! I enjoyed reading some of your posts and look forward to following your also. Hope that your healing is coming along well. Best wishes, Amy

      Like

  2. Goodness! I can relate to your symptoms scarily well. At many points it waslike describing my own feelings and experiences word for word.

    For me my symptoms were gradual which seemed to be triggered by a particularly terrible flu virus with relapses becoming more frequent and intense after my brother’s death.

    At present the worst triggers in noparticular order are stress, exercise (so depressing as i love sport and weight lifting) and alcohol. I have grown wise to the onset of symptoms that start before I relapse. The best remedy is sleep and mountains of raw or steamed veg (esp broccoli). I can sometimes even avert a relapse if caught early enough. However once it has taken hold there is little i can do. It s like an invisable threshold! For me the misery that a cfs relapse brings is almost indescribable. A chronic pain that sits deep inside my very core coupled with fatigue so heavy I could sleep forever. . . such a frustrating wasted paet of my life that I now live with.

    I am proactive in my search for a cure and as of now I am feeling rather good. Broke out of a relapse last week. Latest on my list of things to try is avoiding large amounts of phytic acid!

    All the best
    Jon
    Ps I love ur blog

    Like

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