My turning point for fighting CFS/ME

By on July 21, 2011 in Good News, Headspace, Treatments with 18 Comments

When I look back now I can see that it was the decision to become actively responsible for my recovery from Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME), that was a significant turning point for me.  What caused it?  How did I take active responsibility? And why the beep did it take so long?

I’m probably actually one of the lucky ones.  I was sick with the Ross River Virus for a year and a half, had 3 months reprieve and followed on with CFS/ME for just under a year – so overall its been over two and a half years.   I recon my turning point happened just over two years into it.  I know for some that would have been a miracle and have saved many years of pain, but for me that seemed like a bloody eternity and I often wonder why it took me so long to reach the turning point and really take up the reins.

What caused the turning point?

Until that point I truly believed that I could be cured by something outside myself.  Eventually after much searching and sampling I finally got sick of chasing this illusive cure.  It was costing me a lot of money and it also required energy I really didn’t have to drive around and see people and pick up products.  I didn’t by any means try all the options that I read about but I had tried the following over different periods of time:

  • Acupuncture
  • Natropathy
  • Vitamin C injections
  • Infrared sauna
  • Foot detox bath
  • Skin brushing
  • Homeopathic remedies such as the Metabolic Kit
  • Chinese herbs (raw and in pill forms)
  • Liquid herbs for immune system and depression
  • Bioeffective A – green extracts of pine conifer needles
  • Vitamin C powder
  • Multiviamins
  • Vitamin B
  • Astragalus antiviral herb
  • Cordyceps and Gingseng (Energy Tabs by Fusion)
  • Herbal sleeping tablets
  • Acai Berry Powder
  • Spirallina, barley and alfalfa powders
  • Digestions herbs
  • Blood Sugar balancing herbs
  • Slippery elm
  • Lots of lemon in water
  • Garlic cloves
  • Carrot, celery, ginger, apple, beetroot juice

That is from my recollection, I’m sure there were other things in there as well.  Some things I’ve stuck with and many things I stopped over a period of time.  Its wasn’t because I didn’t think they were working, mostly it was because they hadn’t made a significant difference and that was what I was looking for.

Each time I would try something new I would be hopeful and enthusiastic handing over my cash, which has always been extremely limited during the illness.  But as this occurred many, many times I became tired of the chase, tired of the lost hope, tired of the large financial outlays and more and more I lost belief that anyone or anything was going to be able to turn my life back the way it was before.

This was the point of no return!  I couldn’t keep doing what I had been doing and I couldn’t really see the way forward…… well the way forward looked like a lot more work on my behalf.  Somewhere in that moment I realised that the only way I was really going to do this was if I took the responsibility for recovery on myself.  Well I thought I had been by chasing the cures, but no, this meant really doing it.  Grounding myself into my healing home and finding the patterns to build my energy and wellbeing from the ground up.

How I took active responsibility –  ‘If it’s got to be its up to me’

Once I decided that it was pretty much all up to me then it was really about building the useful things I’d learned about into my day.  I already knew what they should be, I’d read about them and knew in my heart what was important.  But somehow perhaps because of their simplicity, or maybe because of the longer term gratification that would come about rather than instant gratification, I had brushed over them many times before.  I thought there would be a super cure that could save me all the work.  But no, life is generally never that easy.  And I know it’s always more rewarding when I have to work at something, I always get more out of it than I ever really expect and this  experience has been the same.

So the things I started to integrate from my turning point onward are:

  • Daily meditation
  • Daily yoga
  • Exercise
  • Working on emotional healing.  I used the Journey Work method and although I was previously doing it with a practitioner I took it a step further and started to put in the effort to learn to do it myself at home when I needed it
  • Really getting serious about my nutrition and what I put in my mouth.  I also transferred the money I was spending on the many arrays of treatments and products to organic vitamins and food
  • Reducing the time I sat around watching TV and making sure I broke it up with some sort of activity like gardening, some cleaning, some cooking, some errands, learning how to set up a blog on the internet!
  • Starting some routines, little disciplines etc, however this has been a moving feast.  I believe even if my plan changes, as long as I’m focusing on the overall improvement then I’m not sitting in front of the TV nurturing my fatigue.  Don’t get me wrong, sometimes I have to allow myself to just do nothing and TV is a great way for me to turn off, but I found that I knew when I really needed down time and when I was just doing it out of habit and with a little push I could have myself doing something a little more active even just for half an hour before I returned to the resting position once more
  • Reducing my time running around and driving
  • Reading and listening to information that promotes positive thinking like relaxation, spirituality and success books and CDs

Now please don’t get me wrong, I had done a lot of things for my health up until that point and I’m sure they all combined to help my recovery, but I truly believe it was this mindset change which really catalysed the major turning point for my recover.

So why did it take so long?

I had read about and spoken to other people who’ve made a similar internal decision which was also a turning point for them in their recovery from CFS/ME….but knowing that that was the answer didn’t really help me achieve it.  Actually at the time I felt more frustrated that it could be that simple but that I couldn’t do it.  It had to happen organically on its own – at the time that my whole being was ready to move forward.

So don’t think you can buzz off now and start giving yourself a talking to, it really wasn’t that easy – I wish it was, cause then we would surely have a cure for this darn thing.  So go softly on yourself and perhaps having read this post you may have imprinted something into your subconscious that helps to bring about your turning point sooner rather than later.

Also, remember the turning point in my mind also corresponded with a turning point in my physical health, but being the illness it is the progress is not a direct upward and forward movement, there are still potholes on the road and I’ve learnt to accept the good days with the bad, yet knowing though that overall I am getting better:)

Have you experienced a turning point in your recovery?  What caused it and how did it affect your recovery?  I’d love to hear from you.

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There Are 18 Brilliant Comments

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  1. I, like Mel, am one of the ‘lucky’ ones – that recover quite substantially over a period of a few years – unlike the many that spend decades with this condition. learning to live with it is crucial & for me, very frustrating, as i cannot take for granted things i used to take for granted, ie i could outparty anyone and still do good at work the following day. i keep feeling like i am developing a secular monasticism – monastic as in being a regulated, regular life, consistent in daily constituents, such as exercise, food, contact with others – which makes me start saying no no no, that’s not me, i am always ready to cram just another something into a day – it feels like a denial of personality, i wonder whether this is the revenge of my long suppressed natural introvert self? interesting to read the list of things that Mel has tried – my personal list is different, includes a lot of osteopathy which definitely made a significant difference with two step changes as a result. & i know other CFSers who have done different things again – gained much benefit from magnesium injections, for instance, or anti-depressants (which really should get another name, as anti-depressant qualities is only one part of what SSRIs can do). am wildly impressed with the blog and very inspired to make more of my FB page How to Live with Chronic Fatigue – p’raps next week, as i have work things to do this week, more than enough.

    • Green Girl Mel says:

      Hi Lucy, thanks for your great comment. I am totally in the same boat with you re the monastic lifestyle. I was also leading a pretty sweet life of working hard and partying hard before the chapter unfolded, and its pretty weird that I’m now living a hugely different life. Many of my friends are still leading the same lives that I use to partake with….often feels like I’m looking in from afar at something that is slowly becoming a distant memory. I often say its great because it has been a catalyst for changing from the partying life to something much healthier….but its still a pretty sharp contrast. My mum recons that I packed so much into the first 35 years of my life that someone’s telling me ‘thats enough now Mel!’ Funnily a hedonist will never know when enough is enough. Not saying I was totally a hedonist but there were definitely some hedonist qualities about my previous lifestyle! I also love this piccie – how I feel about everyone getting on with the partying, travel and generally awesome lives without me! LOL Thanks again Lucy!

  2. Hey Mel,

    I love this post! My turning point came after my legs basically gave up on me. That was 7 months ago and although I still walk with a stick and get tired very easily, I have taken it upon myself to get better. Nothing is going to stop me.

    xxx

    • Green Girl Mel says:

      Wow Sam, thanks so much. I’m glad it hit a note. And wow that you had to go to that stage. Its such a bummer that we often have to go pretty far down before our survival instincts really kick in. What sort of things did you do or change to start making the improvements?

  3. Diane says:

    Love the pic….it so sums up my life. I have not officially been diagnosed, but as a physical therapist, I really have no doubt that is what I’ve got. I guess I just really haven’t thought having the diagnosis would help….probably some sort of denial. I love my job, working with babies, and have given up weekends and life after 2pm just to keep working. It really hit me how tired I was when I realized that I’m too tired to talk on the phone to my adult children who I love dearly. My parents are both living and in their 80’s…..they both have more energy than me. Not sure why I’m even writing this, except to say I do like your blog and appreciate your efforts.

    • Green Girl Mel says:

      Hi Diane, Thanks so much for your comment, great to hear about whats going on for you. Do you have any idea what might have led up to your getting the illness?

  4. lindsey/Lynn says:

    Greetings Green Girl, So blessed to be here. I have been visiting with FM, since 1995, after 15 different doctor visits, mostly ENT”S, some dentists,pain MGNT., on to alternative methods. Fast forward, owned a health club, designer,Mother of one Daughter, art deco collector, my Daughter is a red carpet stylist to celb’s.. I am now visiting with ME/CFS, after 15yrs. First told I had the yuppie flu, to being bedridden since june this yr. I have been taking control (no advocate ) I have researched all avenues of approach. I had a recent colonoscopy & eeg., found i have a hiatal hernia, & gastritis. Biopsy showed no cancer., had severe adominal pains, esp: after eating…..ck’d gall bladder..ok, incredible swelling, blood CRP class # 4. At that time Feb,11, I was downsizing from Beverly Hills, West Los Angeles, Ca, to a small condo in Palm Springs and splitting from a destructive relationship of three years, giving up my position in edler counseling. My work involved a great amount of driving, I choose to move out of LA, to Palm Springs. Meanwhile I had started a major health regime. All fresh greens, and alo vera, beet root, on & on. Did it all. By Mother’s day I was moved, exhausted Fatigue beyond anything prior. My Daughter, and son inlaw to be announced their engagement….Been waiting for a long time to become a Grandmother, hopefully sooner than later. I have no other family or friends in PS yet. So i made one more visit to LA, to celebrate the engagement/Dinner Party/AH, meet the parents. Jewish & Persian….Good with me!!!!! I also had a high school girls reunion…FUN FUN FUN…..Attorney appt/rear car crash 3yrs ago, that caused, Brain, Frontal Lobe Damage, FMS<CFS<MFS and cervical migraine H/aches, w TOS. Enough. The Wedding is my most motivating factor to achieve wellness…..I fell upon return to new condo, knowing noone, bedridden, THAT"S IT I SAID TO MYSELF… So sick, hired a care giver 4 day's a week, little $$$, sense only had been working P/T. I have been doing nada thing except researching……Here I am. Dr. John Chia, believes in the enteroviruse, cause. I fit the profile, esp" tests in Feb, stomach bio, could have unleashed hidden viruses, running thru to my organs, If you have any thoughts on this please please communicate. I applase you for your work.effort, helping so many people…..God Bless You, Angel…….Warmly, brain dead now!!!!!! Lindsey.

    • Green Girl Mel says:

      Wow Lindsey, sounds like there has been a lot going on for you and that you’ve been keeping it up despite a lot of health complications. Good on you for getting the carer, sounds like you need to kick back a bit and get looked after a little. I’m no doctor that’s for sure, but hey post viral fatigue is a common form of chronic fatigue so Dr Chia could help. I certainly started with the Ross River Virus. I’m going to start some Self-Help Challenges soon via my website – just going to put it out there to see if others want to join me in taking small steps on a regular basis. Everyone will be different for what helps etc so I’ll post some ideas soon if you want to sign up for the email updates I’ll keep you posted. Thanks heaps – and enjoy a hard earned rest! Mel

  5. lindsey/Lynn says:

    Thank you for your reply, I will sign up, and as always, looking forward…..Have my angels by my side. United we stand!!!!!!! respect & Love, Lins….

  6. kerry says:

    hi mel. its 14 years since i contracted my first virus, ross river fever, and quite a journey. in truth i don’t take supplements anymore or search for a cure. the list of things i tried and the amount of money i spent looking for that magic bullet is huge. i maintain a healthy diet and pace myself. i’ve had a lot of time to work out my limits.

    there was a turning point for me about 5 years ago on a mental/emotional level that has made all the difference. i realised then that i was always grieving for the youth and health i had lost or looking toward the future and planning what i was going to do when i got well. or researching the next cure. i never lived in my present. one day i had the thought “what if this is as good as it gets?” i realised then that i had to learn to be happy today. i surrendered. i started to practise turning towards whatever was going on and deeply accepting it. i began meditating and studying buddhism. my husband mistook surrender for giving up but he was never able to accept my illness. i took online courses in managing this illness. i didn’t get better in a hurry. in fact i got much sicker for a few years but i had some terrific tools to work with that helped me cope. and i learnt to make my suffering the path. use the illness as the medicine.

    eventually i realised that my illness had given so much. i actually had much more leisure and much less stress than all my well friends who are overwhelmed with busyness and have never learnt to take a breath or to listen to themselves. i move through life at a comfortable pace. i meditate and sometimes do yoga. i always eat well. i attend teachings weekly and go on retreat as often as i can. my priority is quality of life today and this is a gift. if i had remained well i would doubtless have been pursuing a stressful career and my kids would not have had a stay at home mum who always cooked delicious healthy food. i would not have decided that my spiritual journey is my life’s purpose. for the spiritual life it is much better to live the inner life than the outer. everything else is a distraction. this philosophy has given me a lot of comfort when i compare myself with others and wish that i had their external success or great adventures.

    • Wow Kerry, your story is beautiful, it brought tears to my eyes. Your journey resonates with me. I have also as you’ve read above come through that mental turning point where I started to move within rather than looking so closely at the past, future or what is outside of my sphere. I can say that I am now fairly happy within myself and within the current space I’m in. I must remember this when talking to others as I find when people ask me ‘how are you going?’ I immediately feel I’m not doing great, that I still have symptoms that prevent me from working, and somehow I feel guilty that if I say I’m doing really good (because I’m happy within myself and at where I’m at) that that means I should be working. Funny hey. Feeling good within myself and accepting where I’m at is not exactly full health. But its great regardless. Thanks heaps Kerry, it is great to hear that others are in a similar space.

      • Jen says:

        Same! Exactly what u said mel : )

        • Jen says:

          I had a lovely day lying under trees and birdwatching today. Even saw a seal at the beach. Fatigue can beat work many days (not all though. Sometimes it sucks. Just like normal life) ‘how are you’ is a complicated question to answer. I get lots of pity even though im Fatigued but actually quite well

  7. Rosa says:

    Hi, I came across your blog and I wanted to say that this post and the rest of your blog, is incredibly inspring. I was diagnosed with lupus (an autoimmune disease) which has some remarkably similar symptoms to CFS (including post exertional malaise, flu like symptoms, joint and muscle pain etc). On top of this I was also diagnosed with CFS and fibromyalgia. At my worst point 6 months ago I could not walk at all and I needed care 24/7. Now I am getting better, and I started a very similar blog to you. I still need a wheelchair to go out but I have started walking short distances. Meditation and yoga and healthy eating has been a godsend, as well as realising how important my mind state is to my recovery! Anyway, i just wanted to say again this is a huge inspiration as it has some similarities with mine. I read your post today and it inspired me to keep going when I had a very “bleh” full of fatigue day today 🙂 xxx

    • Thanks so much Rosa for your comments. I really appreciate it. I am so happy that this blog has helped others. I’m astounded at the fact that I stopped blogging a long time ago but still the posts are quite popular and continue to inspire others. It is really great. The reason I’ve stopped blogging is because I’m well now and busy working on other things. I often think of getting back into the blog and connecting up with others, but it is about time management. Perhaps sometime in the future. I hope your health is improving. Feel free to add the link to your blog in the comments for others that pass by here. Thanks Rosa 🙂

  8. Jen says:

    I would be interested to hear how you rate all those things you tried mel. But not offended at all if your life is too busy for fatigue blog maintenance now : )

    • Thanks Jen,
      I’ll consider doing something like that for you. I am still getting a lot of interest in the blog – which is great, so considering doing a little more on it. Sorry for the HUGE delay in replying. Hope you are doing well Jen.

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