The problem with my recovery story.

The problem with my recovery story.

It seems too quick, doesn’t it? Two weeks before I recovered from chronic fatigue syndrome (CFS), I felt I’d reached a standstill. All of my efforts to improve after a major relapse seemed to have led to nothing and I felt I needed to accept the restricted life I was now leading – even cut back.

Then two weeks later, it all changed. Suddenly my body felt different, my energy felt different. When I mentioned this to my other half – who’d seen how the relapse had taken my life away – Gary looked blankly at me, wanting to doubt me but not quite knowing how to put that into words. Over the next few weeks as I started to test out whether I was right, Gary looked worried. ‘Don’t do a boom and bust’, he said.

It took Gary two months before he accepted I’d recovered. Two months of living with me, of seeing how I no longer collapsed in a heap when I’d done too much. He kept warning me to be cautious as I started running, cycling, orienteering, socialising again. By the time, I had my ‘Back to Health’ party he was convinced – and delighted. I cooked twenty friends an extensive Lebanese meal, preparing everything from scratch including Lebanese bread. The next day, I got up and went for a thirty-mile bike ride.

But, of course, you don’t know me, you never saw me as I struggled with my ME/CFS. You may only have read my story I would have paid ten thousand pounds.  You haven’t seen me now as I climb a hill on my bike carrying our camping gear. So, of course, you might doubt my story. The very speed of my recovery is a problem. You may find the story difficult to believe. Gary did. It may generate more questions than answers: Why was my recovery so quick? Am I fully recovered? Has my recovery lasted one year on? How can I be sure it will last? How can something that works on ‘energies’ make a difference?  You may have questions I haven’t even thought of. If so, pop them in the comments and I will try to answer them.

So this post is about doing what I can do to remove your doubts. Let’s give it a go!

Is it really possible to recover from ME/CFS?
Before I recovered, I’d never spoken to anybody who had recovered and I’d never read a recovery story. I knew they were out there but whenever one popped up on YouTube, I quickly moved on. The whole idea was too difficult and too frightening.  Instead, I just focused on what actions I could take to get my old ME/CFS life back; what actions I could take to IMPROVE. I was happy to read success stories, as on the CFIDS self help site  – I liked their emphasis on improvement being possible – but recovery stories, I avoided them. I wasn’t up to facing the fact somebody had recovered and I hadn’t.

If you also have complex feelings about whether it’s possible to recover from ME/CFS, you may also want to just focus on improvement, using success stories to keep your hope up. Leave the dilemma of whether it’s possible to recover to another time. Perhaps, take the attitude – as I did – of concentrating your focus on how you can improve. If you want support to help you with this – as it can be a long, difficult journey – have a look at my Facebook page or this blog post: Where can I look for support?

Why was my recovery so quick?
This is the key one, isn’t it?  There are plenty of recovery stories – once you start looking – but in most of them the recovery journey is one of years, not months. My kind of turnaround is unusual. I have a little bit more of an idea why it happened so quickly for me but it is just a hypothesis. Something that you have to decide for yourself whether it rings true. See what you think:

Before I recovered I was doing many, many things to help my body recover where the key one was Eden Energy Medicine (EEM) sessions  in which my practitioner worked on bringing my body back into balance. I didn’t fully realise the import at the time (see my post: A Messed up Fight or Flight Response? ) but I was helping my body get into a relaxed state of mind or a state where my fight-flight-freeze response was switched off, even possibly into homeostasis – the state where the body is at ‘optimum functioning’.

Just before I recovered we went on holiday:  I had a week of deep, deep relaxation, of being outside in nature. A week of no stress.  I had achieved what is nirvana in the chronic fatigue syndrome world. My fight-flight-freeze response was not just off for a few minutes but for several hours a day.  (Have a look at Now THAT’S what I call a holiday to see all that I did).

But this time, unlike other years, I’d been having Eden Energy Medicine sessions in the couple of months before the holiday; I had been doing work on releasing my ‘messed’ up stress response. So when I did go back to a stressful situation, my body was able to stay at a calmer level. It was as if I had managed to reset my fight or flight response. Reset back to a normal, healthy adult’s level where small amounts of activity didn’t create intense fatigue.

Far fetched? Maybe, but there’s a new drug being trailed at the moment where one of the core ideas is that the stress response can be reset with one or two treatments. Here’s a quote from the Health Rising posts about the new drug:

‘If the idea of a more or less instantaneous reversal after decades of illness seems like some sort of fairy tale, consider that Suzanne Vernon and Gordon Broderick proposed something similar about ten years ago. Their model suggested that an HPA axis reset – by dramatically lowering cortisol levels for a short period of time – could cause the system to spontaneously reset.’
HealthRising post:  Cortene II: A New Drug & A New Hypothesis For Chronic Fatigue Syndrome (ME/CFS)

I don’t know if this quick recovery has happened for other people who’ve used Eden Energy Medicine but it does go some way to explaining what happened for me. Any questions? Just pop them in the comments block below.

Am I fully recovered?
Yes, I no longer have any symptoms of ME/CFS (but I still do have some of my side symptoms (no longer true, see update below)). There are three – yes, only three! – times, I’ve had to change what I wanted to do over this last year because of extreme tiredness. Two of those were when I was carrying ten kilos or more of weight on my bike and cycling thirty miles. The third one was at the end of three weeks of doing heavy DIY  in my spare time when I just wanted a break. All three times I recovered quickly. I can now run for sixty minutes; just yesterday we cycled over 45 miles. Sometimes on a Friday night, I am tired and don’t want to go out but by the end of the evening, I feel refreshed again.

The tiredness has definitely gone but I still quite often feel light headed or ungrounded. Still that’s minor stuff compared to having ME/CFS.  I haven’t looked for full time work and I’m not out every night or away every weekend but after fourteen years of chronic fatigue syndrome I just want to enjoy life and part of that – for me – is having a relaxed lifestyle.

Update February 2019: the lightheadedness and the feeling of being ungrounded have gone! I’m running three times a week with one long run of seventy to ninety minutes at the weekend and I’m usually cycling the other days.  I continue to only get ‘normally’ tired such as on a Friday night and if I go out that dissipates.  My partner and I had a very difficult latter part of 2018 due to situations out of anybody’s control and my stress levels were high and although I could feel the tension in my body, the only ill effects, physically, were a couple of headaches.  Now that things have settled back down, I am feeling very well.

How do I know my recovery will last?
The short answer is that no one can be 100% sure. It may be that my body has a weakness which made it prone to ME/CFS in the first place; it may be that if I put my body under a lot of stress, I will succumb again (but see above under ‘Update February 2019’).   But even in the first month of my recovery last year, I was confident that my recovery would last and, if it didn’t, I knew what to do. I knew that  Eden Energy Medicine had helped me and I couldn’t – and can’t – see why it wouldn’t work again. I knew that I could continue with the daily energy routine as a daily top-up and to have six-month MOT sessions, both of which I am doing.

My intention, though, is to continue to improve my health – mental, emotional and physical and, as I do that, I believe I will move further and further away from the possibility of a relapse.

How can something that works on ‘energies’, such as Eden Energy Medicine, heal ME/CFS?

’The more we discover, the more we understand that what we don’t know yet, is greater than what we know.’

Carlo Rovelli, from the book ‘Reality is not what it seems: The Journey to Quantum Gravity.’

If you’re comfortable with treatments such as acupuncture or reflexology, you’re probably used to the idea of the energies of a body affecting a person’s health but what if you’re not? If can be quite a leap from believing conventional medicine is the only type of treatment that works to being open to other treatments, such as Eden Energy Medicine . Here’s what helped me make the leap:

  • Realising that conventional medicine understands so little about how our bodies and minds work (especially how they work together).
  • Knowing that sometimes we can feel the energy of a room when we walk in and asking myself ‘What am I picking up?’
  • Thinking how treatments such as acupuncture, Chinese medicine, chi gong have ‘stood the test of time’ (2000 years and more) so perhaps they have something going for them.
  • Trying out different alternative treatments and getting some benefit from them.
  • Knowing that I can feel ‘something’ between my hands if I rub them together, hold them 20 to 30 cm apart, and then ‘pulse’ them. Here’s a video where somebody shows people feeling ‘energy’: Here’s a video where somebody shows people feeling ‘energy’: People feeling energy for the first time.
  • Accepting that science has only a limited view of the world, and wanting to be open to other possibilities

Of course, it is up to you to decide what you are comfortable with. Eden Energy Medicine may not be for you but I encourage you not to close your mind to the possibility.  Most of the recovery stories I’ve heard of involved the person using a treatment that ‘conventional medicine’ does not accept.  Do you really want to close your mind to the chance of help?

Was it chance or was it Eden Energy Medicine?
If you look at the Wikipedia entry for energy medicine the implication is that it’s not possible for energy medicine to help anybody. If it does help, it’s either ‘spontaneous remission’ or the placebo effect. The entry seems to be quite biased though wrapped up in ‘facts’ so I thought I’d put my (alternative) viewpoint here! (Of course, I’m biased too but at least this way, you have both viewpoints!)

For something to happen by chance, there must be a possibility that it could happen at any point ie it implies I could have recovered at any time from ME/CFS. But I didn’t and thousands don’t either. I didn’t recover when my ME/CFS was milder and I tried the NHS help. I didn’t recover when I was using acupuncture or energy healing. I didn’t recover when I was using resting and relaxing as well as I possibly could. I didn’t recover on my long breaks in the summer. So, if it was by chance, why did I recover when I did? Um, that question isn’t answered by the skeptics….

I did recover when I added both Eden Energy Medicine and visualisations to the mix, and these were the only two new things I did in the last couple of months before my recovery. Perhaps it was the Eden Energy Medicine, perhaps it was the visualisations, perhaps it was the placebo effect. But if it was the placebo effect why didn’t I recover when I tried the other treatments? I was just as positive about them.

Perhaps it was the power of the healing visualisations I was doing. The visualisations were all about helping myself get better. Eden Energy Medicine, healing visualisations or chance? You decide.

Are miracle recovery stories possible for everyone?
It would be nice, wouldn’t it? But I’m not sure looking for a miracle story would have helped me. In fact, I think it would have hindered me. Six months before I recovered I had a major relapse. This relapse drove me to look not for recovery (miracle or otherwise) but for improvement: I just wanted to get my old (CFS) life back. But it did mean that suddenly I was really, really taking responsibility for my CFS life. Would I have done that if I were expecting a miracle recovery? I’m not sure.

Have a look at this video by Alex Howard of Optimum Health Clinic, called  ‘The problem with miracle recovery stories.’ where he explains this very well. This video is what promoted me to write this post!

So would I recommend you look for a miracle? No.

Would I suggest you focus on understanding what characteristics, what skills and what actions are needed for recovery?   Yes. Will you need to add a known-to-help treatment? Probably. Would I recommend Eden Energy Medicine? Yes, for sure.

Warm wiahes

Ali


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The problem with my recovery story.

7 Replies to “The problem with my recovery story.”

  1. I love your story. I’m recovering from CFS at the moment too, and I know how miraculous it feels. It’s like winning the lottery and I so hope others can find the cure too.

    In my case, I went to a functional medicine practitioner who specialises in Chronic Fatigue (Laura D’Itri) and we found that Epstein-Barr Virus was causing a lot of my problems. Now that I’m on a protocol of many herbal medicines, I’ve had a massive improvement. I went from bed-ridden on many days to now being able to walk 3 miles in a day. So I’m at about 50% energy, compared to 2-3% before.

    It will take several months and cost about £4,000 by the end of it, but as you said in your post, I would have paid £10,000 (I would have paid much more than that!) for this kind of a result.

    Interestingly, I’ve started doing Eden Energy Medicine routines again because Laura explained that my Chronic Fatigue wasn’t *caused* by Epstein-Barr, it was just being severely exacerbated by it and I feel like I need to address the root cause.

    I had already decided that stress was basically at the heart of it, and Donna Eden’s explanation that a flight-or-flight reflex which never turns off causes CFS makes sense. However, like you, I tried EEM early on with CFS and didn’t see significant improvement so I gave up on it. There are no practitioners within 90 minutes of me here in rural Scotland, and doing it myself just didn’t seem to do the trick.

    Now some 4 years later, I can see that I needed to give the EEM longer to work, and also try more techniques beyond the 5 Minute Daily Routine. So I’d love to know which exercises you did for your CFS, if you would share them. You mentioned the Pru Harris CFS protocol didn’t work for you — why do you think that was the case? I’d also like to know, do you still do any EEM now?

    Thanks again!

    Liked by 1 person

    1. Hi Rachel.
      Thanks for your lovely comment and I’m so pleased you’ve found ways to get such a remarkable improvement and you’re heading to recovery.

      Yes, I very definitely still use Eden Energy Medicine. I do the daily energy routine twice a day plus other protocols to keep everything in balance (as well as I can 😉).

      Although I didn’t feel any change because of Prune’s protocol, I think I would still start there. I didn’t actually see any noticeable change in my energy levels even with having sessions with a practitioner until I recovered so it may be that is just how my body works: no change until a massive improvement! You may want to look at adding in the Crossover Shoulder Pull as this is an exercise that is newer than Prune’s blog.

      I’ve got more suggestions in this blog post https://everydaykindoflife.wordpress.com/2019/01/18/what-is-eden-energy-medicine/. You could also add in the Triple Warmer smoothie and maybe one for the chakras such as the chakra climb. It’s a matter of exploring, learning and becoming your own expert. Donna’s book, maybe the Mind Valley course (I’ve not done it but have heard good things), joining the Eden Energy Medicine Facebook groups will all help with this. (You can search the FB groups for ME/CFS to see previous discussions). It is all about getting a balance, doing what fits in with your day, not getting too serious about it, being consistent and persistent, and noticing what feels good or helps. All the best.

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  2. I really need to read this today. I’m crying as I write this. I’m so frustrated with my life because of CFS. Support forums are depressing and the recovery stories are far and few. I’ve so tired of chasing one “treatment” or promise of a cure only to be disappointed and more broke at the end. I just want my life back.

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    1. So glad that I could be of help to you today, Christine. And what you wrote is so much how I felt at times – and many others too. ME/CFS can really get to you. I used to avoid those depressing ME/CFS forums too! It’s only since my recovery I’ve found some better ones. If you haven’t seen it already, have a look at my post ‘Where can I look for support?’ https://everydaykindoflife.wordpress.com/2018/07/24/where-can-i-look-for-support/ for links. In case it helps, I have ‘crying’ down as one of the many factors that helped me: I just needed to let those feelings out. Then, when I could I’d pick myself up and give myself what I think of now as a ‘moment of pleasure’: a cup of hot milk and chocolate biscuit sitting in the garden, watching the birds. Those ten minutes used to help keep me ‘sane’.
      Thank you for taking the time to comment and all the very best on your journey.

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  3. So agree with your analysis. It takes ages to get it but I am thinking just like you, finally, after six years of endless research. 👀 I am going to go on a holiday too. A fight or flight break. It’s helped before but this time I’m going much longer with more tools. Thanks for the tips. Well done you!

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    1. Really pleased my blog has helped! 🙂 It definitely takes time to collect the tools that we need and as somebody who only really got serious about searching in the last six months – I just couldn’t see how anything could help – all praise to you for not giving up. Good luck with your break.

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