Blood tests, hypothyroidism and vitamin D

I’ve recently got back from a fabulous holiday in Costa Rica, Central America. I am super lucky to be able to go there; I have amazing family and friends there, it’s beautiful, very biodiverse, the people are delightful and you can walk into a lab like a highstreet shop and order any blood test you like.

I know that this is quite a privileged thing to be able to do, and I wouldn’t advise that you do it unless you know how to interpret the results or have a doctor who can help you with it (I also saw an endocrinologist while I was there).

In the UK getting your own blood tests done isn’t possible. Here your GP has to order the blood tests, which means they first have to think that the tests are worth ordering and that the NHS should spend money on them. Even then, the lab tech running the tests can decide not to bother if they don’t think it’s relevant (I’m not kidding, this has happened twice with my Husband’s tumour markers!). It’s therefore quite uncommon for vitamin deficiency tests to be run, for example.  We also don’t get the full thyroid panel, or levels of antibodies. This lack of monitoring can make it hard to determine whether the changes you are making to your lifestyle and diet are having a positive effect on your hypothyroidism.

I can walk you through the diet and lifestyle changes you need to help your thyroid in a safe and systematic way, that’s unique for you! Click HERE

So I went with a plan. I wanted to know whether the vitamin supplements I have been taking are A) having an effect on my vitamin levels (i.e. being assimilated properly) and B) whether I should continue to take them.

I try not to take vitamins unless I really need to. In a lot of cases it’s unclear what a high dose of some vitamins can do, and there has been a fair amount of bad press out there. On the other hand, we know our bodies need certain vitamins, and for hypothyroid people, vitamin deficiencies are common and often undermine the health changes you’re making. For me Vitamin D is an important one – many hypothyroid people assimilate vitamin D poorly, yet it has such a huge role in moderation our immune systems. We don’t really get it from our food, and in the UK, getting it through sun exposure can be challenging.  Personally, I take a high dose Vitamin D3 supplement. In doing so, I need to watch my calcium levels as these can drop. SO I was curious to see what my test results showed.

Interestingly, despite this high dose supplement, my vitamin D levels were right on the boundary of being deficient. This means one of two things 1) that my VitD levels without the high dose supplements are ridiculously low or 2) that the supplement isn’t being assimilated. I don’t know which is the answer, though I do know that I start to feel tired, lethargic and brain-foggy when I skip my Vit D for a few days.

Luckily my blood work showed perfect Calcium levels, so no worries there.

Of course I had anti-thyroid antibodies, as you’d expect with Hashimoto’s Thyroiditis, and my white blood cells were slightly low – again common with my thyroid condition.

So, I’m sticking with the Vitamin D supplements and continuing to eat right and be well!  I’ll be back on the calcium-rich bone broth ASAP!

Caroline x

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.

Want to start feeling better right now? Check out my Reboot  I’ve packed all my best tips on how to get your health back on track in just 4 short weeks. This online package allows you to find your foundation of good health. It guides you through changes that will have long-lasting effects on your symptoms and overall health in a safe and manageable way.  It’s a great start towards taking control of your health and reaching goals!

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All the best,

Caroline

 

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

The truth about Gluten

We have all now heard of Gluten. But do we all know what it is and why we ‘should’ be avoiding it?

Cutting gluten from my diet was a huge factor in my recovery from Chronic Fatigue Syndrome (though I didn’t know it at the time), in shrinking my goitre and significantly reducing many of my Hashimoto’s Thyroiditis symptoms.

But, many people think that going “gluten-free” is a fad and that it’s just the latest dieting craze, and for some that is true. For others it is the difference between health and disease – and sometimes that disease is Cancer, sometimes it’s Crohn’s, which could mean losing your intestine, and sometimes it is an autoimmune disease that could continue to attack your body.

Many people don’t know if they should be avoiding gluten or not. These people tend to dabble in gluten-free living. They perhaps buy some items from the “free-from” ranges that now adorn supermarket aisles and feel somewhat virtuous when they manage to consume a gluten-free sandwich (if, of course, it holds together long enough it eat it). But does eating mostly gluten-free count? And what exactly is gluten anyway?

What is Gluten?

  • Gluten is a complex of proteins found naturally in the seeds of cereal grains.
  • The gluten protein types that can cause adverse reactions are glutelins (glutenin) and prolamins (gliadin).
  • These proteins are also responsible for the unique properties of gluten, which make it so appealing for baking – trapping air to enable dough to rise, giving elasticity to bread and dough as well as a chewy texture.
  • Gluten-containing seeds include: bulgar wheat, durum wheat, barley, rye, kamut, faro, graham, semolina, triticale, einkorn and spelt.
  • Gluten is used as a protein supplement (particularly in Asian cultures e.g. seitan), as a thickener in sauces, flavourings, medications, stock cubes and sweets.
  • Gluten is much more widespread in the Western diet, where processed food is more common and widely available.

Check out some of my gluten-free recipes HERE and HERE

What is Gluten Intolerance?

The term “Gluten intolerance” is often used to describe three conditions:

  1. Celiac (coeliac) Disease: Autoimmune disease, where the body responds with an overreactive adaptive immune response, triggered by gliadin and primarily concerning the small intestine. It may manifest several hours or days after consuming gluten. This response harms the delicate villi structures and lining of the intestine responsible for nutrient absorption. An inflammation response may also occur leading to leaky gut syndrome – where large proteins pass through the gut lining, and often leading to chronic poor health and the development of other intolerances. Celiac disease can be confirmed by a blood test for the relevant antibodies and biopsy, though negative results do not mean that you don’t have it.
  1. Wheat Allergy: Strictly speaking is and allergy and not an intolerance. This is an immediate and often severe histamine reaction to the presence of wheat (not specifically gluten). People may develop hives, shortness of breath and swelling – this is known as Type 1 hypersensitivity and is a different type of immune response to that of Celiac disease. 
  1. Non-Celiac Gluten Sensitivity (NCGS): This is the least well defined of the gluten intolerances. Currently, people who test negative for Celiac disease and who do not present with wheat allergy, but still feel unwell upon eating gluten are labeled with NCGS. They likely also have a “leaky gut” and a host of symptoms associated with a malfunctioning digestive system. People particularly susceptible include those with an autoimmune disease.

Should I quit Gluten?

Cutting gluten from your diet if you aren’t gluten intolerant is unnecessary, but many people are unsure. If you suffer from digestive issues –irritable bowel syndrome symptoms, bloating, cramps, discomfort, weight problems, if you have dry skin and rashes or if you feel very tired after eating gluten and have difficulty concentrating – it’s likely you have a problem with gluten. In which case, going gluten-free will:

  1. Help you achieve good long-term health
  2. Alleviate symptoms
  3. Increase your energy and improve your mood

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Going gluten-free can be overwhelming as it’s in so many things and many of us include it in every meal and snack. You may wonder what on Earth you can eat on a gluten-free diet!

On June 24th I am launching my Go Gluten-free online coaching package. This is a 4-week package that will guide you safely through the tricky transition to gluten-free living. I provide you with information and tools so you can make informed decisions about your health and then implement lasting change. I also enable you to conclusively determine whether you are gluten intolerant and I’ll be on hand to answer your questions. Read more HERE or send me an email: caroline@flourishwellness.co.uk

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Look after your health and be well!

Caroline x

P.S. Did you read my post “Is your immune system attacking you?”, you might find it useful in reaching your health goals!

Symptoms of Hypothyroidism

Sleep has always been an important part of my life, and I’ve been able to sleep in some pretty spectacular situations – from a sun-warmed stone on a mountain top to the bouncing bow of a boat in the cold, driving rain. In hindsight, my ability  – or need- to nod off was probably a symptom of my thyroid disease.

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Recently I have met a lot of people with hypothyroidism, or suspect they have it despite their blood work being normal. Many of these people have a long list of symptoms that they have never associated with their thyroid condition and have lived with them for years. They are are used to feeling less than optimal and easily put these, often non-specific, symptoms down to age or lack of sleep.

But what if you could feel better? What if you could get rid of those aches and pains?  Today I want to give you a more comprehensive list (but by no means exhaustive) of the symptoms you may experience with hypothyroidism – there may be more than you may realise.

Chronic symptoms of hypothyroidism can be reduced or eliminated through changes in eating habits and lifestyle.

I’m walking proof of this. I have gone from being bedridden, aching all over and barely able to move to, on the whole, being fully functional!  I still get the odd flare-up, but there is usually a clear cause, such as over working, catching a horrible bug or letting my sugar consumption creep up. When this happens I know I have to go back to basics and “Reboot“, to get back on track. And it works.

If you have hypothyroidism, particularly Hashimoto’s thyroiditis, and suffer from chronic symptoms it’s important you know that they are an indication that your body is not functioning at it’s best. You have those symptoms for a reason.

Masking symptoms with pain killers and supplements without addressing the cause can compromise your long-term health.

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If you have these symptoms please know that you can feel better. It may take time. It may take effort, but it is possible! With no help or guidance from medical doctors as to how to manage my diagnoses (first CFS and then Hashimoto’s thyroiditis), just a prescription for Thyroxine, for a long time I thought I was going to be virtually house-bound for the rest of my life. Thank goodness I took control of my health and made the necessary changes to feel better.

I read and researched. I used my background in Immunology to understand the science behind my disease, then I listened to my body and used my knowledge of nutrition to heal and get as healthy as possible.

Here is a list of some of the symptoms you may have, even if you’re taking thyroxine. How many of these do you have?

  • Palpitations
  • Fatigue
  • Slow speech
  • Slow movements
  • Brain fog/confusion/forgetfulness
  • Liver tenderness
  • Insomnia (yes, even with hypothyroidism)
  • Hypoglycaemia
  • Muscle and joint stiffness
  • Fibromyalgia
  • Pins and needles
  • Puffy, itchy, scratchy eyes
  • Puffy hands and feet
  • Cold extremities/ low basal body temperature
  • Irritable Bowel Syndrome (IBS)
  • Tinnitus/hearing problems
  • Restless legs
  • Hair loss
  • Eczema/ dry skin
  • Migraines
  • Blurred vision
  • Anxiety
  • Mood swings
  • Inability to cope with stress

I had more than 75% of these symptoms and I was misdiagnosed for 5 years. Now I live largely symptom free!

Get in touch to hear how we can work together to improve your health and get rid of your symptoms.

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If you have some of these symptoms and haven’t got a hypothyroidism diagnosis, then it’s advisable to talk to your doctor. These symptoms don’t mean you DO have hypothyroidism and are not meant for diagnostic purposes. If you are at all concerned about your health, then make an appointment to see your doctor.

I am happy to help you make positive dietary and lifestyle changes alongside your medical doctor.

Take control of your health and feel better!

With warmth,

Caroline x

P.S. Have you signed up to my mailing list? Click here for information and offers straight to your inbox, including FREE Pukka Tea when you register for The Reboot!

P.P.S. Interested in health coaching but not sure what to expect? Have  read of THIS page or send me an email HERE.  You can have a FREE Discovery Session with no obligation to sign-up for coaching. Remember, I can coach you no matter where in the world you are!

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.

Confused or don’t know where to start? Send me an EMAIL.

Or start The Reboot and start feeling better fast!

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?

10 things I learned from Chronic Fatigue Syndrome / ME

I was diagnosed with Chronic Fatigue Syndrome (CFS) or myalgic encephalomyelitis (ME) in 2010.  I had been struggling to function for nearly a year and been told repeatedly that nothing was wrong with me – all tests were normal. I got CFS as I was writing my doctorate thesis and after having a really bad stomach virus that my body simply couldn’t recover from.

I was bedridden and/or housebound on and off for about 18months. I had extreme fatigue, brain fog, headaches, fibromyalgia – muscle aches and pains. I was uncontrollably losing weight, despite a voracious appetite, and my digestive system was playing up. At one point I also lost my vision.

It was a really hard time, though in amongst it all I completed my doctorate (yep, with brain fog…) and got married (albeit in slow motion)!  Despite those achievements, I faced the terrifying possibility that I wouldn’t ever be able to work or to have a family – how could I have kids if my arms were too weak to hold them?

It was time to take control of my health. I slowly managed to get myself functioning again by making significant changes to my diet and lifestyle. I have to keep a close eye on my health, particularly in light of a new diagnosis, but I am now able to have a busy, full life and I have two kids (who I can hold, cuddle and run around with!).

Here are 10 things I learned from CFS

  1. We don’t have an infinite supply of energy – diagnosed as a twenty-something this was news to me! It shouldn’t have been – I had spent a lot of my life feeling exhausted, but I had never really acknowledged or accepted it. It wasn’t good enough to be tired all the time – “I shouldn’t need to rest”, “I should keep going”, “naps were a waste of time” etc. I inevitably would pour another coffee or eat something sugary to see me through, then crawl into bed at 9pm.
  2. Energy should be spent wisely – Once you realise you only have a certain amount of energy to spend in a day, and that that amount is somewhat limited, you have no time for people and things that waste it – and that’s ok.
  3. Who gives energy and who takes it away – I realised that I invested a lot of energy into people. When I had CFS those who contributed to my life in some positive way and those who drained my energy became strikingly apparent. This was a really important life lesson. I stopped following-up with the “takers” and I felt immediately better. This was a clear lesson in self preservation.
  4. I am an introvert – and proud! – Despite having a keen interest in psychology, I hadn’t previously dwelt on, or investigated, which area of the various personality continuums I fall into. A very good friend of mine recommended I read “The Introvert Advantage”, by Marti Olsen Laney. For me it was life changing! I strongly related to this description: “Introverts draw energy from their internal world of ideas, emotions and impressions – they are energy conservers”. I realised that I had been living under the guise of an extrovert – perhaps to “fit in” to the extrovert world of science (which is bizarre as many scientists are introverts!).
  5. Physical activity doesn’t have to be high energy – many people with CFS are told that exercise is good – and for some a staged exercise regime works well. For a many years before CFS I would push myself into going to the gym, to swim or go to aerobics classes. In all honesty I hate the gym. I find nothing pleasurable in going at all, and now that makes sense. I much prefer being physically active outside, surrounded by nature or by positive non-judgemental people – its energising. I also realised that I don’t need to keep up with other people’s expectations of what a healthy exercise regime should be – its unique to me.
  6. My biggest energy drains – small talk, rubbish television, sugar, caffeine, anxiety, anger and stress.
  7. My biggest energy sources – one to one conversations with interesting people, time alone being creative and thinking, taking the time to enjoy and savour a really good cup of tea (caffeine-free), yoga, warm and nourishing food.
  8. My body knows what it needs – I just have to listen. For a long time my body had been giving me signs that things were not going well, but I did not acknowledged them. Had I been more connected with they way my body felt, and had a higher respect for it, my dip into the world of CFS may not have been so dramatic.
  9. Epsom salt baths are amazing – I believe everyone can benefit from bathing in Epsom salts! It rebalances magnesium deficiencies, soothes aching muscles, helps with sleep and is thought to encourage the elimination of waste and toxins (sip water while you bathe).
  10. What matters in life – who and what deserves my precious energy. I decided that I deserved my energy – my health was worth fighting for, that I wanted kids and opportunities to live a full life. My kids and family are worth my energy and so are the unique and beautiful people that I am lucky enough to call friends.

This is my experience with Chronic Fatigue Syndrome and I believe it was directly related to my recent Hashimoto’s Thyroiditis diagnosis. Everyone’s is unique – from the triggers to the symptoms and the factors that help or hinder recovery.

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Do you have experience with CFS? Do you know someone with it or who has had it? What did your experience with CFS teach you?

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