Exploring the Layers Beneath ME/CFS – Part One

Welcome to the Digging Deeper Series!

My hope is that what I am about to share might inspire any of you who find yourself in a similar position to the one I have been in in recent years.

If you are feeling stuck on the recovery path, overwhelmed by too many options or simply wanting a little inspiration. These posts may be just what you need to encourage you to dig a little deeper, tap in your own intuition and keep gently moving forward on your own healing path, one step at time.

Ultimately, I hope that from reading the words I am about to share, you realise that you are not alone when it comes to navigating through Chronic Illness and its complexities.

In this series, I’m going to share some of my personal experiences from the last few years with you. The coming posts are going to take you through new health discoveries, the journey it’s taken to actually get to those diagnoses and also my healing protocols too.

These posts are honest, open and show what actually goes on behind the scenes when someone is trying to heal chronic illness.

I am going to share this in four parts as a Series. I will  pop some sub headings in as I go along, so you can scroll to the bits of interest if that makes it easier for you too, especially if you wish to come back to reference anything.

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A Little Bit of Background on My Story

When I started the Consciously Healthy Blog three years ago, I was pretty sure things were slowly and steadily improving in terms of my health and healing. After many years of severe illness, it seemed I had reached a place in my recovery journey where my health was stable enough for me to begin to share my story and my experiences.

However, as is so often the case, it seems life had a different plan for me. Since starting this online space, the next stage of my healing journey hasn’t been as plain sailing as I had naively hoped. It’s actually been incredibly messy, unpredictable and deeply challenging. Up, down and all over the place, with more more bumps in the road and complications than I ever expected.

Those of you who are familiar with my story so far, may remember that a couple of years ago I began further investigations into my health conditions. I was initially diagnosed with ME/CFS when I was Seventeen, back in in 2000 (such a long time ago now) by an NHS Neurologist.

When you are diagnosed with ME you are pretty much left to your own devices, as currently there is no known cure. I’ve heard the words ‘there’s nothing we can do’ from so many GP’s and specialists when I have gone to them in times of sheer desperation, so I have had no choice but to take my healing into my own hands and explore different ways to restore my health.

In the years since my initial diagnoses I have read widely around the field of health, healing, wellness and psychology in order to educate myself as best as I possibly can. I’ve learned so much about the body, mind and various healing modalities, but this last three years I feel like my learning has deepened even more than I could imagine – as you read this blog post, you’ll more than likely see why that is.

2015 – The Year things Unexpectedly Changed

Early in 2015 I had reached a place in my recovery where I felt I was slowly getting stronger. I had made sense of why I had relapsed so acutely back in 2010 after making what I thought was a full recovery and after years of immense pain and suffering I was slowly but steadily improving and regaining my energy once again.

I actually vividly remember being on holiday in Cyprus at this time, and feeling so much better. I was having glimpses of feeling quite well and really did feel like healing was on the horizon. Don’t get me wrong, I was still far from being fully recovered and healthy, but I was having glimpses. Those glimpses of feeling as if the fog had lifted and the severity of my setbacks becoming much milder were clear signs to me that things were heading in the right direction. It was around this time that I decided to take the leap and start this blog, but I didn’t know what was lurking around the next corner.

Not long after returning from Cyprus, I unexpectedly developed a rare bacterial throat infection that went undetected and untreated. It absolutely knocked me sideways and it was over eight weeks before doctors realised what it was, by which time it was beginning to spread through my body. It felt extremely similar to when I had Glandular Fever (the virus that triggered the ME/CFS back in my teens), including the high temperature, swollen neck and extreme malaise.

I was unable to get out of bed and could barely string a sentence together or hold my own head up. I felt so deeply unwell, in a way that felt so different to an ME/CFS relapse alone. After far too many weeks the doctors finally discovered what was wrong and I was put on the correct course of strong antibiotics, but it seemed by this point the damage was done in terms of setting me back.

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By the Autumn of 2015, after many months trying my best to recover from the infection, I was absolutely certain something had changed in my body. Things felt different. When you’ve had a condition for over 15 years, you know your own body don’t you? You know the patterns of relapse, and how your body reacts if you’ve over done it etc.

Whatever was happening now, possibly as a result of that infection, just felt so different. I instinctively knew something more than just ‘ME/CFS’ was going on now.

There were absolutely no improvements in my symptoms or the crushing fatigue, despite me applying all I knew that usually helped me. Month upon month I was experiencing a steady deterioration with new symptoms appearing every week. I was housebound and bed bound once again and I was getting really breathless just trying to sit upright. My vision was distorted and I was struggling to see out of my right eye, I had gained over a stone in weight and there was an endless list of symptoms I’d never had before, on top of the suffocating fatigue that was once again at a level that was all consuming and unbearable.

I had no idea what to do or where to even start looking. The only place I really trusted, from having made progress there in the past, was the Optimum Health Clinic in London. I wasn’t well enough to travel, so they organised a phone consultation for me. They asked for a full set of blood tests to be done by my GP surgery, and gave me some vials to have some extra blood taken and sent off to a lab to test some other things.

Thank goodness these tests were requested by my practitioner, as my GP had neglected to do any further testing despite my severe symptoms.

So many of my blood tests were out of range, some of which I have posted below.

My Ferritin was extremely low at 11 (it should be around 70-90)
My Cortisol was very low at 298 (below 200 suggests life threatening Addison’s disease and complete adrenal failure).
My Cholesterol was high and had risen to 7.1 (despite my healthy diet and lifestyle)
My Kidney function results were out of range.
My Liver function results were out of range.
My Prolactin levels were extremely high.
My Female hormones (LH and FSH) were severely out of balance.
My Inflammatory markers were high.
My Thyroid readings clearly indicated the starts of Hypothyroidism

My Doctor gave me some Iron tablets, shrugged his shoulders and was happy to brush the rest under the carpet, labelling it as ‘an ME relapse’. I am sad to say isn’t unusual for this to happen to ME patients. So often doctors group all symptoms together, pop them under the ME umbrella and send you home, washing their hands of you, the result being that sometimes other things can be missed.

It was crystal clear to me that I desperately needed further investigation, I knew my own body and what was normal for me. I was seriously unwell, with excruciating symptoms and deteriorating by the week with a long list of abnormal blood results. With the help of my Mum, I pushed for a referral to an Immunologist in Leeds and was also referred to a Gynaecologist to look further into my out of range female hormones.

It was a starting point and I hoped and prayed that I would maybe get some answers and guidance as to what was going on and what I could do to begin to improve things.

This series will continue with Part Two – ‘The Tests and Consultations’ where I share so much about the various consultants I saw next and the new diagnoses that were to come to light. Part Two can be found Here…

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Emma x

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Disclaimer: This Website and all the information which it contains is based on my own personal experience and health journey which I am sharing for educational and informational purposes only. Please consult your own doctor or healthcare provider to determine the best course of treatment for you.