Guest Post: Rachel's ME/CFS Story
This post is a guest post by site contributor Rachel Lodge as part of ME/CFS Awareness Month.
CONNECTION IS POWERFUL
I’m writing this blog sat at my desk, just a few miles outside Salisbury, UK. My name is Rachel, and I live with my husband Andy, and my funny Labrador Ruby. Towards the end of last year, after discovering Dr. Courtney Craig via Health Rising, I decided to consult with her as a patient. Dr. Craig, an American Nutritionist now living in Germany; and me based in my little UK village, connected through our own personal experiences of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and connected by our mutual belief in the power of nutrition as a form of treatment.
When this mystery illness hits, it opens your eyes to a form of suffering that you didn’t even realize was possible - especially when you’re in the prime of your life.
It’s an experience which has driven both of us to fight for answers and to make some of this invaluable information accessible for others, especially those who are without the energy or the ability to do so for themselves. So, there’s the connection! Now I’d like to share a little of my story…
Why Nutrition Matters
Sometimes life just feels like one hit after another. At the age of 14, I watched my Mum lose her battle with lung cancer. She was only 45 years old and a non-smoker. Devastating. Then, whilst in my final year at university, I received the horrendous news that my Dad had been diagnosed with colon cancer. He battled on for a further 5 years, but the cancer spread to his liver and he died at only 57 years of age. So, by the time I hit 27, I’d already lost both my parents to disease and I was reeling…
Interestingly, as a child, I remember my Mum first instilling an awareness of good nutrition in me - she was clearly concerned about me cramming in too much sugar and nasty additives. Takeaways and processed foods were significantly limited (much to mine and my brother’s frustration at times!) but I guess for me, something about the power of that message stuck. Having a front-row seat to the devastation that cancer had caused in my family started to awaken my interest in health and, more specifically, how we can strengthen and protect the body through optimized nutrition. Sometimes I like to think of things very simply, and I think Patrick Holford puts it well, “Your body is composed entirely of molecules derived from food…Your nutritional status determines, to a substantial extent, your capacity to adapt and maintain health.” That’s good enough for me! How on earth can we expect our bodies to be strong and resilient in an increasingly toxic world if we don’t supply them with the absolute best nutrients we can get our hands on?
I believe in the power of great nutrition, and I’m encouraged that even small changes can have a very significant impact.
This field of interest couldn’t have been further away from my original studies in Business (!), but it was strong enough to lead me to seek work as a Dietetic Assistant in the National Health Service (NHS) as I attempted to gain some real-life experience within the confusing world of nutrition. Although working with patients was great experience, I soon realized that the confines of Dietetics was incredibly frustrating - too much of a short-term, ‘one-size fits all’ approach for me. It wasn’t long before I decided I wanted to re-train to become a Nutritionist and so began my part-time degree in Nutritional Science.
A Perfect Storm
A combination of part-time work, part-time study, financial stress and the death of our first Labrador, all culminated in me contracting a chest infection whilst working on the hospital wards. It was the ‘perfect storm’ for illness to take root, and I’m sure you can probably guess the rest. Although my initial symptoms improved with a course of antibiotics, I started to feel very unwell and after a year or so I was finally diagnosed with ME/CFS. During this time I pushed on at work, but the symptoms overtook me. We attempted an overseas holiday for a break, but I was hardly able to leave the hotel room. Cognitively, I was struggling with even simple concepts, so revising and retaining information for degree-level study was becoming increasingly difficult. Simply standing stationary waiting for the bus would leave me feeling disorientated and light-headed. The myriad of symptoms made me feel increasingly anxious, as I simply felt like my body was failing me and I was out of control. I remember coming home from work one day and slipping all the way down the stairs - clearly ‘pushing through’ was not working!
So there I was, age 32, in the so called ‘prime’ of my life, finding myself forced to give up much of my work, study and life as I knew it, having only managed to complete the first year of my degree. Ironically, the NHS healthcare system where I served at the time, failed me when I most needed answers for my own health.
Like many of those suffering from ME/CFS, I was pushed from pillar to post seeing a number of mainstream consultant doctors who simply weren’t equipped to offer me the help and hope I desperately needed.
Several years into the condition, we were suddenly hit with news that sounded more like the plot for an unrealistic movie than real life…my husband Andy was diagnosed with a rare form of leukemia known as ‘hairy cell leukemia’. Without warning, cancer had struck my husband too and we were struggling to even take this in. Thankfully, we quickly learnt that this form of leukemia was extremely treatable, and after a course of chemotherapy we are eternally grateful that he is now in full remission. For a while though, the tables were turned, and within the limitations of my own condition I became Andy’s carer; supporting him through chemo treatments and even managing to drive him to hospital on good days. Supported by the prayers and help of friends and family I feel like we were carried through this time. I still remember trotting into his hospital room armed with my homemade smoothie in hand - there was no way I was going to leave him relying on hospital food! But it has since struck me that, just as it should be when you get ill;
…he was believed, treated with respect, and given an appropriate and extremely effective treatment. We weren’t expected to fight to be heard, or to navigate treatments on our own. My dream is that this will be the case for all those with ME/CFS too.
A Small World
So here I am now, 8 years later…still ill, and house-bound most of the time. My world has shrunk significantly, and pacing has become an enforced reality. For me, the ME/CFS symptoms fluctuate each month with my menstrual cycle, so roughly speaking I have a couple of “good-ish” weeks and then I go downhill for the remainder of the month. This alone, makes it almost impossible to find suitable employment, adding to the isolation that so often accompanies this little-understood illness.
I have the condition to a moderate level, which makes me one of the fortunate ones. On some days I can still write, see friends, play my drums or perhaps make it to the beach with my husband. It breaks me to think of those suffering with severe ME/CFS, and those suffering alone without the care of a loved one - it must feel like absolute torture.
That’s why I feel driven to speak up for those who can’t.
Coping with ME/CFS sometimes feels relentless, BUT, I’m determined to find some ‘life’ right where I’m at now, despite my limitations, even if the only thing I can control in any given day is my response to all of this. For me, there has to be purpose in the pain. Am I going to let this illness eat me up and spit me out, perhaps leaving me reeling with bitterness and resentment? To be honest, it’s a daily battle, but choice is incredibly powerful, and I choose to search for effective treatments; to teach others about those treatments, and to advocate for those sufferers who can’t speak for themselves - even it’s a daily choice to do so. Other days my “choice” is simply to rest because of the severity of the day’s symptoms…and that’s totally ok too.
Lady with the Spinning Head
Over the years, it’s been easy to feel like U2’s song ‘Lady with the Spinning Head’ at times! Trying to navigate the potential treatments out there in the big wide world is daunting, especially when you’re not a doctor or a scientist and you’re struggling cognitively to even take in simple concepts. For me, a key part of finding hope is learning from the experience and expertise of others. That’s why Dr Sarah Myhill’s book (‘Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis’) now takes permanent residence on my coffee table. It’s what has led me to seek expert nutritional guidance over the years, and more recently to seek out a functional doctor - something I wish I’d done several years ago.
Having also recently become a patient of Dr Craig, it’s been a relief to share the load, and get the guidance that comes from her years of first-hand experience of the illness and its treatment options as we start to view this condition within the wider context of functional medicine - together.
Dr. Craig’s story gives me hope and inspiration that ME/CFS is a treatable illness; albeit within what can sometimes be a lengthy journey of trial and error. Her approach respects the knowledge I’ve already gleaned, but also encourages me to keep moving forward and to keep asking the pressing questions.
As my health allows, I’ll be writing a series of blogs that give an overview of some of the nutritional approaches I’ve trialed over the years, getting back to basics, and some of the dietary and medical interventions I would like to try soon. I’ve had a few milestone moments in my journey - starting to play the drums being one of them! However, I’m most definitely a work-in-progress and sometimes that progress can be frustratingly slow, but I’m praying that my tipping points are just around the corner and I’m looking forward to sharing them with you because connection is powerful.