Overcoming ME (Myalgic Encephalomyelitis): My Path to Recovery and Regaining My Life

Overcoming ME (Myalgic Encephalomyelitis) & PVFS with ANS REWIRE  Transcript:

Introduction: My Long Battle with ME

Hi, my name's Sue. I live in Kent in the UK. I'm 69 years old and I had ME for 18 years, and I just wanted to talk today about my experience of using the ANS REWIRE program, which has helped me recover.

I was a senior manager in higher education and I also was a musician. So I was in the evening doing gigs, not every night, but you know, weekly, and calling barn dances, and I had a very active life, and then I became ill in 2003 on a working trip to Los Angeles.

The Onset of ME: A Life Changed Overnight

I had a very severe virus, and after that I had a number of infections. I went back to work, then I collapsed about eight months later, and went back to work again, had more infections, and then collapsed again, and one of the things, interestingly, the first time I collapsed, I remember saying to my partner; "My brain's ill." , which was very interesting when it came to looking at ANS REWIRE, but I'll come back to that later. I was then appointed to head up the Department of Emerge University and I was commuting 100 miles, etc, and so two years on, I then collapsed completely. my symptoms, I was diagnosed in 2006 with post viral fatigue syndrome.

Symptoms That Defined My Life with ME

My symptoms basically, centrally mimicked the original severe virus I'd had in Los Angeles and that was a pattern throughout my illness. but I had other symptoms too. So basically I had a total weakness, fatigue, uh, poison pain, I called it, I think it's lactic acid, I'm not sure since I've learned it might be that. I had dizziness, nausea, constipation, digestion problems, swollen sinuses, puffy eyes, sore throat, knees, swollen and painful glands, head throbbing, fireworks going off in my head, I was forgetful, confused, heart racing, nausea, my thermostat had gone, I used to say, so I had hot flashes and then really cold, tinnitus and orthostatic problems.

I couldn't stand for any length of time, uh, even when I was feeling slightly better. So, after that collapse, I was mainly bed bound for four months, and I had to take early retirement because the merger, they needed someone to lead up the department. But that did give me a chance to recover somewhat and I also had a partner at home full time who was caring for me. So I, after a couple of years I would say I got back to about 60-70 percent well and then gradually over the years 70-75 percent, but basically every few weeks I'd have 3 days to a week where I just had to stop. I wouldn't call them crashes exactly, perhaps because I had moderate ME, but I would be, I might not need to stay in bed, but I would be just not doing anything outside the house. I couldn't be the reliable person that I felt I was, you know, but I got used to it, it became my life.

Searching for Answers: ME Treatments I Tried

Treatments I had tried, really, I did get a referral to an NHS ME centre, but that really focused, underlying it was an assumption that this was a psychological issue.

There was some help with the idea of pacing, but nothing in detail. A lot of it was about motivation, and I had lots of motivation. I just didn't have the physical ability to, to carry it out. So, my GP over the time only ever offered antidepressants and some possible treatment that might help fibromyalgia, but I didn't have fibromyalgia. I was lucky not to have that. So Other than that, I, I, it was self treatment. every time I had a bout of illness for more than a couple of days, I would get onto the internet and see if there was anything new that might be able to help me. So I took quite a lot of supplements.

And I, I went gluten free, quite early on. I had somehow found that that, that was making me worse and I went alcohol free and I had a very healthy diet.

Hitting Rock Bottom: My Worst ME Relapse

In November 2017, I had severe flu again, a really bad flu and it seemed as though my immune system reset itself. I came out of that flu feeling absolutely fantastic after a few weeks, obviously recovery, and I, for 18 months.

I was living as I had before. I don't mean irresponsibly. I mean, I had loads of energy. I was full of light and life, and I had an amazing time for 18 months, and then in November, in March 2019, I collapsed. It was a very severe relapse, at least as bad as the first time I was ill, and I was absolutely devastated.

By this time I was on my own. I was very frightened and I had absolutely nobody to help or care for me. Nothing from, you know, GPs or NHS or anything like that.

Discovering ANS REWIRE: A Turning Point in My ME Recovery

I fell back on my usual practice to start researching on the internet and I was on a number of Facebook groups for ME and I saw a tetestimonial from a woman called Claudia, which is on the website and she had, it was on an ME awareness, uh, Facebook page, and I looked at it and it struck a chord with me. So I started looking at the program, and immediately it went back to that idea that my brain's ill. it, it made absolute sense to me. So I decided to sign up.

I could also afford it, which made a huge difference. It's very, very affordable. I think obviously some people would still struggle, but I was lucky enough that it was affordable to me, and that was important. What struck me also was the holistic nature of the program. Because I'd done so much research over the years, trying to find solutions here, there and everywhere, and read books like, from Dr. Sarah Myer Hill, which is quite comprehensive, but quite difficult to follow. I had, I, I recognised that a huge amount across a whole range of things needed to be dealt with, and ANS REWIRE just provides that. It's all done for you, and I, I sort of drew a sigh of relief. I could stop searching because it was all here.

All the work had been done. It was also important to me that Dan had had CFS himself and had recovered using these ideas. There's no mysterious quick fix here. I also liked, that it's just a solid, well structured guide, uh, which can help you through, and Dan's delivery of the videos is, is, is just so enjoyable.

It's accessible, but it's really, you, you relax and enjoy the video and you learn so much when you're relaxed, I think, more than having to concentrate. It makes them easier to follow and easier to remember as well. A lot of the things, the gestures and so on that he does really, help you feel better about the whole thing.

How I Began To Overcome ME

After just two months on the program, I went on holiday. I had special assistance at the airport and so on, but I went on holiday, uh, to the sun for recovery. I was able to walk about the large hotel comfortably and went for little walks while I was there, and I also went on two day trips. one was nine hours long and I had a fantastic time.

And I came back from there feeling really great.

Overcoming Fear and Mental Barriers

But that winter wasn't without its kind of setbacks, and I came to a point where I was reaching a plateau. I wasn't progressing, particularly with my restorative movement, my exercise. So I wasn't getting that much stronger. My symptoms were going, but I wasn't getting that much stronger.

And then I had a one to one with Dan, which really helped me to recognize that I was still uh being held back by the trauma, the fear of relapse because I'd had that sudden relapse, and that, inspired me to go for psychotherapy to help with hidden triggers and also to help with the fear issue.

And once I got that resolved, my recovery really started, and from then on it was an upward trajectory, little, little things. pauses, but nothing, you know, nothing really to, to speak of. I also found meditation a bit of a challenge at first. I always had a, what I called a busy brain and that meant meditation was a challenge, but that was actually why I needed meditation.

And that's the thing I found with the program, that where you have the greatest challenges, they are the greatest needs that you have, and so you persevere with them, you get the greatest benefit, and that really helped. I think the recovery now, the moment I really, I recovered by November, I spent a week with family doing all sorts of things, and that felt absolutely great, but the best moment for me was at Christmas.

Life After ME: Thriving Again

I went to a Christmas event, a Christmas session, uh, with my musician friends, and we're a raucous lot, and I sang and I played until half past eleven at night, and I could have gone on all night, but I thought I'd better go home. but I, I really felt wonderful and I just, I just floated away after that, nothing, uh, no repercussions, nothing.

And I just thought, this is This is really living again. I'm now fitter. I'm fitter than I was actually. Not fitter before I originally got ill, because I mean, I'm considerably a little bit older, but I'm certainly fitter than I have been in 18 years, and I will, I know I will be fitter than I ever was because now I just, I feel so alive and I'm enjoying exercise and moving forward.

Um, I've had wonderful responses from family who, and friends who tell me, you know, how well I'm looking and they're sort of looking at me as they don't, almost don't recognize me. There are a few things that I'd like to mention particularly. One is, I was dealing with ME alone and I know a lot of people will be, and I did wonder whether that would hold me back. In a way, I mean, I could have done with a bit more normality at times to take my mind off things.

Why I Recommend ANS REWIRE for ME Recovery

But on the other hand, it gives you a chance to do everything at your own pace entirely, and that helps, and although ANS REWIRE is self managed, the style of the program makes you feel supported.

So you can do it on your own, and as I said, you get the flexibility and doing things at your own pace, which helps. Through ANS REWIRE I've been able to resolve a lot of issues in my life that led to me being ill. mental and physical really. I had significant gum disease and it provoked me to make sure that that was absolutely cured.

And I don't think I would have got fully well without that. So it's important underlying issues. Of all kinds are worth looking at to make sure there's nothing holding back your recovery. It took longer for me to recover than for some. Two years, three months, but the keys to recovery were there in the ANS REWIRE program.

Sometimes I would have to go back to a video, and that's the good thing about the program. You can go back and look at something and you see it in a different way, and you, it helps you resolve a problem that you might have. The other useful thing I find is the assessments, because you don't necessarily see your progress day to day, especially if you're on your own, but you've got the review sheets and when you look back at that previous month and you look at the difference, you think, wow, actually I am making progress and that helps you move forward.

What the program does mean, as I said, is you recover at your own pace, and that was really important to me in terms of building my confidence after that fear from relapse. I'd encourage anyone with CFS ME or related issues to go for ANS REWIRE, and I do, I recommend it at every opportunity. It's, there's nothing mysterious about it.

It's honest, well researched, really thorough, and it works, and I've got my life back.

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