Living with Chronic Fatigue Syndrome CFS/ME

I was diagnosed with Chronic Fatigue Syndrome in 2010 after I had been virtually housebound for nearly a year. At the time of diagnosis, and to this day, I felt like it was an unnecessary  and useless label. The diagnosis didn’t come with any kind of treatment plan, medication or even advice. It simply came with a “we don’t know much about it, but you’ll probably have this for life”. I was sent on my way believing that that was my lot. Thanks Doctor.

Chronic Fatigue Syndrome does more then it says on the tin – and that’s why many CFS suffers are fed up with this vague and dismissible name. CFS/ME is a complex chronic illness that manifests differently among it’s victims and involves not only debilitating fatigue, but also chronic pain, irritable bowel syndrome (IBS), brain fog, weight loss, fibromyalgia, headaches, nausea, insomnia, muscle weakness and more.  woman-506120_1920

The causes of Chronic Fatigue Syndrome are still debated, despite it being reported for more than 200 years. It’s likely that there are several triggers, and that a unique mix of factors trigger each individual’s illness.

In addition to viruses as the cause e.g. Epstein Barr, a recent review proposes a disruption of gut microbiota as a possible cause (Navaneetharaja et al. 2016). Our gut microbiome is so important for our long-term health this proposal doesn’t surprise me at all, and it fits with my experience. Because our gut microbes are so important, whether they are disrupted by a pathogenic virus, poor diet, stress or something else, the knock-on effects can be far reaching.  CFS has also been proposed as an autoimmune disease triggered by gut dysbiosis and disruption of the lining of the gastrointestinal tract (Navaneetharaja et al. 2016).

It’s easy to think that the virus that I caught in Costa Rica in 2009 was the culprit, as many studies show connections between CFS and various viruses, but in reality the virus I caught was the straw that broke the camel’s back. My CFS had been simmering away for a long time – I believe since my mid teens.

For me, I believe my immune system has been operating sub-optimally for a long time. I believe that my CFS is a result of gut dysbiosis and autoimmunity.  I know that when I look after my gut and acknowledge my diagnosed autoimmune disease (Hashimoto’s thyroiditis) my symptoms improve. It’s common to collect autoimmune diseases if you don’t catch them early and work at reducing inflammation.

For years I’d had periods of inexplicable exhaustion. As a child I’d happily curl up anywhere and go to sleep. In the summer holidays I remember systematically sleeping in until 11:30am and being shocked by how tired I was, but I simply couldn’t wake up earlier. I’ve never been sporty or energetic and I know I should be in bed at 9pm. I have been constantly cajoled, pestered and teased into doing things – going for walks, staying up late, going to the pub – when my body is crying out for sleep. At university, during my undergraduate, I had one day of SCUBA diving each week in the winter. I’d suffer severe headaches afterwards and I’d be exhausted the next day, barely able to walk to my lectures. In my early 20s I’d wonder if I’d be able to walk to and from town – just a 20 minute walk – but I was unsure of my strength. I remember catching a cold and being in bed for days, and then unable to walk faster than an 80yr old with a Zimmer frame. It was ridiculous and I remember marvelling at my lack of strength.  Each of these episodes passed and, once they had, I continued on with normal life – after all, all the doctors I saw told me I was normal.

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The final straw

I got seriously ill in 2009, at the end of my PhD. I’d had several quite stressful years during my PhD, but I’d loved my work and was passionate about producing high quality science. I’d worked hard in a very toxic system with no support. I had my ideas and data stolen, suffered abuse of power, manipulation and sexual harassment – things that are rife in academia. No-one had my back. I didn’t have an academic champion or mentor until it was far too late. This stress during my PhD was definitely a huge contributor to my poor health – and a big factor in distancing myself from academia. But it wasn’t the sole cause of my CFS. Many people unhelpfully told me I’d made myself ill by working too hard. While several studies link perfectionism and CFS (as reviewed by Kempke et al. 2015) this isn’t the full story.

What it CFS feels like

The fatigue is like no other. A total exhaustion that stops you from being able to lift your head off of the pillow, from moving your legs to get out of bed, from standing while the kettle boils or from being able to speak. It prevents you from functioning and makes you pause and question the necessity of every action. The brain fog that goes along with it is nothing short of terrifying. I could no longer rely on my brain. I couldn’t recall dates, times, facts or even names of close friends. I couldn’t problem solve. I couldn’t hold a conversation because I couldn’t follow it or remember what had been said or what I had already asked. It was humiliating and scary. I had terrible IBS and, despite eating three or more main meals in a day, I kept loosing weight. I ate and napped. That was it.

I went from being a competent, independent and reasonably intelligent woman to someone who couldn’t communicate with her friends, didn’t have the energy to read and couldn’t walk to the end of the road. I was by myself all day while my husband was at work. I was lonely and down. I needed to be cared for. I needed someone to shop, cook and clean for me, and my husband became my carer.

broccoli-952532__180Slowly I made myself better by focussing on me and allowing myself to put my health first. I took advice, I listened to my body and I learned to let go of anger. I changed my diet, even though my diet was healthy, and my approach to life. I radically reduced carbohydrates and I cut out gluten. I prioritised my sleep and I stopped using chemicals in my home and on my body.

It took time, but I returned to “normal” – at least I was no longer chronically fatigued and ill. I was different though, but in a good way.

I have to keep on top of it, especially since I also have Hashimoto’s thyroiditis, which shares many of the same symptoms as CFS. When I let my diet slip or if I pack too much in (which is a constant tendency),  I know I’ll pay the price.  It’s all about balance.

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Do you suffer from CFS or another debilitating illness? I’d love to hear your story.

I’ll be posting soon about the changes I made that helped me get my energy back, so FOLLOW my blog to make sure you don’t miss out.

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All the best,

Caroline

 

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Top tips for healthy eating

Last week I attended the College of Medicine’s conference “Food. The Forgotten Medicine.” It was really interesting and uplifting to hear that some doctors are now acknowledging that food is a cornerstone of good health.  They also recognised that the 0 – 6 hours of nutrition training doctors get in Medical school is insufficient (and could explain why your doctor is reluctant to discuss any dietary interventions).

I’m hoping that the role of the health coach will soon be accepted and respected by the medical profession. As a health coach (PhD) , I have the time and expertise to talk through your diet and lifestyle. To hear your concerns and to understand your unique experience.  I can then work with you, as an individual, to find the right dietary and lifestyle changes so you feel better for the long-term.

It was a shame that only one patient had a voice at the conference and that she was the very last speaker. Carrie Grant gave an brilliant synopsis of her story with inflammatory bowel disease, and how hard it is to take control of your health in the current health system. It’s difficult to be a knowledgeable patient – as I know only too well.  As Carrie put it, the consultant hold the power, “and they kind of like it”.

It was highlighted again and again at the conference that the typical “healthy’ diet that many people have been following for decades (due to government guidelines) is wrong and even dangerous.  The NHS recommends you “Base meals on potatoes, bread, rice, pasta or other starchy carbohydrates” – do NOT do this…

Top tips:

  1. Carbohydrates cause problems. Carbohydrates (e.g. flour, pasta, bread, rice etc) cause chronic low levels of inflammation that ultimately lead to disease e.g. Cancer, heart disease, autoimmune and inflammatory diseases (IBS, Crohn’s, thyroid disease, arthritis, ulcerative colitis etc). Carbohydrates therefore should NOT form the main component of a healthy diet (contrary to the NHS eat well guidelines).
  2. Fats are good. We need them – 60% of our brain is fat, what do you think happens to that on a low fat diet? But, we need the right kind of fats, ones that reduce inflammation rather than cause it. We need the omega 3 fatty acids found in nuts, seeds, olive oil and fish, and smaller amounts of  omega 6 fatty acids found in animal products. Processed food should be avoided at all costs as these are unhealthily high in omega 6 and trans fats, which are toxic.
  3. Fruit Juice is NOT healthy.  Fruit juice, fresh or otherwise, contains a lot of sugar. Without the fibre you get by eating fruit, this sugar goes straight into your blood and causes a stress response in the form of insulin production.
  4. Wholegrain is only wholegrain when it is the whole grain. You might want to read that again. Basically it means that a wholegrain ceases to be whole once you mill it. Milled grains are easy to digest so the sugar that it digests down into rapidly goes into your blood.  Wholegrain is more difficult to digest and so releases sugars slowly.
  5. Refined sugar alternatives are often no better. Sugar, in any form, will cause a stress response in your body. Many alternatives, like agave syrup, contain up to 75% fructose, which can alter the insulin pathway. It’s unclear exactly what sugar substitutes, artificial or otherwise, do to the body. You should avoid eating anything artificial. Natural sweetness that trick the brain are likely to cause problems with signalling.

If you’re suffering from a chronic inflammatory or autoimmune condition, making these few adjustments to your diet could have a big impact on your symptoms. There are lots of positive dietary and lifestyle changes you could make so that you can live symptom free, or even reverse your condition (as with type 2 diabetes).

Seek the information, make healthy choices, live well and feel better!

Caroline x

Chronic Fatigue- diagnosis to remission

Sometimes I can’t quite believe that I was pretty much housebound for 18 months in my twenties. Other times it seems all too close for comfort. The lack of recognition and respect Chronic Fatigue Syndrome patients receive still astounds me.

For me, like many, it was a long road to a very unsatisfactory diagnosis. For over a decade I told GPs that I was exhausted and not able to keep up with my peers. I told them I felt unwell and that I was worried. I told them I was not depressed. I told them that I was sleeping 12hours a day and was still exhausted. I told them I had to rest for days after exerting myself and that I lacked concentration and motivation. At each and every appointment I was told that my symptoms were vague and non-specific and therefore there was nothing to be done. I was told I needed to socialise less (at a point during my degree that I was a hermit), to get more sleep (more than 12hrs a day?) and that I was probably depressed (maybe, but chicken or egg?).

And so I lived in this state of exhaustion. I resigned myself to it. I thought it was just  the way I am. But I could never fathom how people could just get up and do things, how they could achieve so much. Where did they get the energy? Why couldn’t I do everything? Why wasn’t I “normal”?

Things came to a head when I was writing up my PhD thesis. I’d moved to Costa Rica to write up (well, why not!?) and, within a week of being there, I contracted a really bad stomach virus. I didn’t eat anything apart from watery rice for two weeks. I lost a lot of weight and I simply never recovered my energy.

I was extremely ill. I couldn’t shuffle across the apartment without stopping to rest. I couldn’t stand in the kitchen long enough to boil the kettle. I couldn’t hold my arms above my head for long enough to wash my hair. I had to have a nap after a conversation. I had irritable bowel syndrome. I ached all over – in both muscles and joints. I couldn’t concentrate for more than a nano-second and my memory was atrocious. I was constantly hungry and loosing weight rapidly. One day the world went black and I temporarily lost my vision.

I went from doctor to doctor and had test after test. I gave countless vials of blood and saw a seemingly infinite array of “specialists”, but none could offer me any viable explanation. All told me I was “normal”.

I soon learned that being “normal” in the medical world simply means that the test needed to detect what is wrong hasn’t been discovered yet.  Unfortunately, it seems that most doctors tend to listen more to the lab data than to their patients. Either that or they are unwilling to collaborate and problem-solve with the patient.

I wrote my PhD thesis and planned my wedding – I’m not sure whether this was tenacity or stubbornness, maybe a bit of both. I knew that, like most, my PhD was a huge stressor, and had been for sometime. I knew that I wouldn’t start to get better until I could put it behind me. My decision to persevere and finish my thesis was met with a lot of eyebrow raises and head shaking, but I knew having it hanging over me would be worse in the long run. That was my decision.

Back in Australia, newly married and with my doctorate (cum laude) secured, I was unable to leave the house. My GP finally stuck a label on what I had: Chronic Fatigue Syndrome. She told me there was no cure and that I would likely have it for the rest of my life – that there was nothing I could do.

For me, that meant no career, no kids, virtually no social life and that my new husband would be my carer. Clearly something had to change.

I read and researched CFS, and a friend recommended a local naturopathic doctor. Finally someone who listened to me, who didn’t tell me I was imagining my symptoms or that I was depressed. He is ordered tests and diagnosed me with dysbiosis and intestinal permeability – things that many doctors still deny the existence of despite a wealth of evidence. Together we looked at my diet and lifestyle and I began to make changes. It was slow, and it was hard, but I stuck at it. I designed my own diet, one that suited my needs and took my various nutrient deficiencies into account.

Slowly, I began to get better.

I also took a long hard look at my life, and where, and to whom, I was loosing energy. I realised I wasn’t good at looking after myself and I usually put myself last.

What’s most interesting is that my pre-CFS diet wasn’t “bad”. I’ve always eaten vegetables, nuts and pulses. I hardly ever ate fast or processed foods. I always cooked from scratch and kept myself hydrated. Clearly, a “normal” diet was not ideal for my body and was not going to promote healing and health.

I learned that doctors don’t always know best. That you are the expert of your experience and no-one should try to diminish it. Once you have found someone who will work with you, instead of dictating to you, you’re onto a good thing.

Had I not been told I was “normal” 10 years earlier, maybe the autoimmune storm that seems to be my body’s default status now wouldn’t be raging quite so hard.

After a post-doc in the USA, having a couple of kids and caring for my husband through cancer, I am now help others take control of their health as a Health and Nutrition Coach. I help people with chronic inflammation reduce and eliminate symptoms associated with thyroid disease, type 2 diabetes, inflammatory bowel disease, irritable bowel syndrome and CFS, and weight management through cancer. I always encourage people to discuss our work with their doctor. But it’s amazing how many doctors refuse to listen and instead belittle the huge steps these people are making in taking control of their health.C_14

Fat is not the problem

For years heart surgeons, doctors, the government – anyone you can think of – have advised us against eating fat. It has been drummed into us that saturated fat is particularly bad, and that if we eat a lot of it we will get fat and also develop heart disease. Eating too much fat was considered the primary cause of heart disease, the theory being that high fat results in high blood cholesterol, which clogs arteries.  The advice was to switch to a low-fat diet, and take statins.

Now doctors, even heart surgeons, are admitting they were wrong.

There is NO link between saturated fat intake and heart disease, even in patients who already have coronary artery disease (Puaschitz et al. 2015)!

Heart disease is not about fat, its about inflammation.

With the advice to cut dietary fats came a boom in obesity, diabetes and other metabolic syndromes. Low-fat products flooded the market and we all felt virtuous when we consumed them. But what were, and are, we consuming? In an attempt to make these products appealing in the absence of flavoursome fat, low-fat foods are usually laden with sugar and additives. And this is a big part of the problem – these substances cause inflammation and don’t fill us up like fats do (so we often go back for more).

Inflammation is the underlying cause of chronic disease. It is a normal, natural and vital part of our immune system – we need inflammation to protect us from harmful bacteria, viruses, toxins and to seal our wounds. It needs to be activated quickly, contained locally and suppressed effectively – otherwise it becomes harmful. It is designed to be short-lived so that it doesn’t go on to harm our own body. When it is not short lived, and becomes chronic, we become diseased.

Our Western diets are largely based on refined carbohydrates e.g. white flour and sugar, and too much of the wrong fatty acids, plus we are surrounded by new and synthetic chemicals, that can also trigger the inflammation response.

Reduce Chronic Inflammation and feel better

Cutting fats from our diet robs us of vital nutrition and usually leads to an increase of foods and substances that are detrimental to our health, like processed low-fat foods.  We need fat for vital body processes. Here are some examples:

  • Blood cell formation
  • Hormone production
  • Vitamin transport (some are only soluble in fat)
  • Protection of nerves and conduction of nerve impulses
  • Cholesterol (yep, we need cholesterol – it carries vital fats and vitamins around our body and helps produce hormones)

Some fats, such as Omega-3 (an essential fatty acid) are vital to our health and need to be taken in through our diet. Omega-3 essential fatty acids are extremely beneficial for optimal brain function and in preventing disease like cancer, heart disease and arthritis. You’ll therefore be compromising your health if you avoid this form of fat!

Omega-6 is another essential fatty acid, but unlike omega-3, we tend to over consume it because it is present in high quantities in many processed foods. Over consuming this fatty acid causes inflammation – which is what we want to avoid!

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What fats should you eat? 

Of course, what your body needs is entirely unique, and so, therefore, are the types and amounts of fats you need (read more about my health philosophy HERE), but in general it is all about balance – or regain balance if you are currently unwell. Yes, have some saturated fat in your diet, but ensure it is from a good healthy source – butter and coconut oil are good options – and don’t go mad with it. Ensure you only cook to a high heat with oils that are stable at high temperatures (i.e. saturated fats; coconut oil, butter, lard). My preference is coconut oil as I can’t tolerate dairy due to my Hashimoto’s Thyroiditis. Use olive and nut oils on salads and generally where you are not using a high heat.

Ensure you are getting your Omega-3 fatty acids from oily fish (well sourced)  as well as from nuts and seeds (Chia is particularly good – I always include this in my Omega-3 Super seed mix and sprinkle on breakfasts, soups, casseroles etc). You will not get fat from eating nuts and seeds as part of a whole foods, balanced diet (i.e. not based on processed foods). The additional minerals and fibre you will gain from adding nuts and seeds will help you feel even better.

Avoid packaged, processed foods, which are often high in trans-fats (usually artificially created to promote shelf life), refined flour and sugar.

Consult a doctor before making major changes to your diet, particularly if you have a chronic conditions. Remember you are the expert of your body.  You can read some scientific articles about fats and heart disease HERE and HERE.

Want to decrease your chronic inflammation in a safe and sustainable way?  Make a great start by completing The Reboot!  The Reboot is an online health coaching package designed to help you get your energy back, take control of your health and embrace your life in just 4 weeks. Click HERE  and HERE for more information.

Think you might want something more personal? Get in touch HERE for a FREE no obligation Discovery Session to learn how I could help you.

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Be well,

Caroline x

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How much sugar?

Sugar has been in the news a lot recently, and maybe you are sick of people talking about it. Maybe you don’t want to feel guilty for that glass of coke or that extra slice of cake, and fair enough – it’s your choice. But what if it is seriously affecting your, and your family’s, longterm health?

It’s easy to listen to the news and think that sugar is a “fat” person problem, or that you don’t drink sugary, carbonated drinks, so you’re ok. But unfortunately that’s not the case.  Sugar, in any form (fruit sugars, honey, maple syrup, corn syrup..), is potentially harmful – yep, you read that right, but hear me out.

Sugar types

The negative effects of sugar are numerous and far reaching – to the point that it was recommended by scientists years ago that it be regulated like tobacco and alcohol. The effects are that serious. It is that toxic.

I know that when I’m having an autoimmune flare-up – fatigued, headachy, joint ache, big puffy eyes (all because of my thyroid disease), the first thing I need to do is check the amount of sugar in my diet. And I generally don’t eat much sugar at all.

Sugar causes:

  • Metabolic Syndrome: diabetes, hypertension, liver problems, cardiovascular disease and non-alcohol fatty liver (Read more HERE).
  • Fat stores – when consumed in high doses, fructose overwhelms your liver’s ability to process it, so it gets stored as fat to stop it harming your body.
  • Hormonal mayhem – For a start, fructose suppresses gut hormones that tell you you are full (leading to over eating). Secondly, glucose causes your body to flood with insulin (a growth hormone), which is good and normal, but over stimulus can lead to insulin resistance and type 2 diabetes. If you have a condition that involves the endocrine system e.g. thyroid disease, then you need to have a think about sugar.
  • “Bad” gut micro flora bloom, leaving you bloated, sluggish and unable to digest food properly.
  • Tooth decay
  • Cancer risk and poor prognosis (read HERE).
  • Chronic Inflammation – all those underlying, background symptoms -aches and pains, arthritis, headaches – may relate back to sugar.

So, am I suggesting you never eat anything sweet again, including fruit? No.

I am suggesting that you take a look at how much of each sugar type you currently eat and whether the risks are worth it. Learn how much your body can tolerate and chose the types you consume wisely.

Of course I’m not telling you to stop eating fruit, just don’t under estimate it’s sugar content – always go for the whole fruit, which includes fibre and water to help your body deal with the sugar, rather than juices or dried fruit.

What should you do? Here are some absolute basics:

  1. Stop drinking soft drinks, fruit juices and squash/cordial – swap for tea, vegetable juice or water with lemon or lime.
  2. Start checking labels. Anything with more than 5% sugar is not a good option.
  3. Get in the kitchen – Clear out your cupboards and start cooking.  Get rid of your packaged, processed food. Buy fruit, vegetables, nuts, pulses and lean meat. You don’t need to be a master chef to put together a quick and healthy meal.
  4. Stop buying low fat foods – fat is not bad. Sugar is bad, and sugar gets turned into fat. Low fat foods are full of sugar.

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Flyer for webWe have made big changes as a family. I want to reduce the chances of more Cancer in my family and to keep my Hashimoto’s disease under control.

Sugar is at a minimum. We eat some fruit each day and have dark chocolate or homemade granola or muffins as a treat every now and then. It is difficult and sometimes we have to Reboot.

It is hard to live a low-sugar life, because it’s become the norm to consume a lot of sugar on a daily basis. It’s normal for kids to have sugary snacks throughout the day, and to top-up on sugar-fill fruit juices or squash. In fact, if you “deprive” your child of these tasty, toxic, treats you are considered slightly strange and probably a bit mean. I try to make it as easy for my kids as possible, and am usually ready with a healthier alternative, but it takes planning and motivation.

I think it’s worth it – I’m sticking at it for our long term health.

Are you on a low-sugar eating plan? How has it benefited you?

4 signs your immune system is attacking you (and what you can do about it)

Autoimmune and inflammatory diseases  are becoming more prevalent and include Hashimoto’s Thyroiditis, Grave’s disease, Celiac’s disease, type 2 diabetes, arthritis, eczema, asthma, irritable bowl syndrome and Crohn’s Disease.

Most of us know someone with one of these, and some of us are unlucky enough to have one ourselves.

These diseases occur when our immune system goes wrong and attacks parts of our body, like the thyroid in my case, and/or when our immune system is constantly triggered into activation – Chronic Inflammation.

If having one of those diseases wasn’t bad enough, chronic inflammation also increases the risk of heart disease and stroke (Kristensen et al. 2013) and is linked with 25% of cancers (Eiró and Vizoso 2012). Click here to read my about experience as a carer for Cancer.

It’s really important to be aware of inflammation and to keep it as low as possible.

4 signs of chronic inflammation:

  1. You’ve been diagnosed with an autoimmune or inflammatory disease
  2. Tiredness and fatigue
  3. Muscle and joint aches and pains
  4. Strange things are happening with your digestion – e.g. you feel you have developed food intolerances, you have lost or gained weight or you are bloated.

(the last 3 points are general signs that something might be wrong and may need further exploration in collaboration with your doctor).

How to reduce inflammation

The best way to ensure we don’t put our body through any unnecessary inflammation is to avoid situations that tend to provoke it. Unfortunately, usually the foods we eat and the lifestyles we lead tend to promote chronic inflammation.

Here are 5 things to cut out today:

  1. Refined sugar and starches – These trigger the release of inflammatory messengers (cytokines) and are linked with increased intestinal permeability. Want to quit sugar? Contact me HERE.
  2. Alcohol (see my post “Why I’m going Dry for January”)
  3. Red meat – the NHS guidelines suggest a daily intake of 70g/day. See what Cancer Research UK has to say about it HERE.
  4. Stress – does what it says on the tin. Our bodies weren’t designed to be in constant fight or flight mode. Take time to relax, be mindful and look after your body.
  5. Chemical irritants – Get rid of unnecessary chemicals in and around your home! Help your family and the environment at the same time. Hints and tips for going eco-friendly coming soon!

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Your body and lifestyle are unique and so your inflammation triggers will be.  

Get in touch to work out what yours are and start feeling well again! 

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