Today

… I woke up and sprang out to bed. I raised my arms to the ceiling in a cute post-fantastic-sleep stretch and a massive smile came to my face. A new day and a new adventure, I thought. I kissed my boyfriend, grabbed a towel and ran for the shower. The water sprinkling down I was lost in the reverie of the day I planned ahead of me. I thought of the meetings, the tasks, the deadlines, the evening drinks, the boxing circuits class, the ironing pile, the emails, the blog post… all of the things that would fulfil my day and my life….

… then I woke up and realised today it would only be a dream. The truth is that I don’t do much of that on a good day these days because I have had to learn to pace myself but I can usually perform a large majority of these tasks over time. Today I woke up and realised I wasnt going anywhere or doing anything other than resting, eating and using the bathroom…

There was a time when this realisation would sent me into a pit of despair because I wasnt yet ready to accept the limitations of having ME. I was trying to force my condition to fit in with my existing lifestyle; I didn’t understand that it was the boss of ME and me. It isn’t a total tyrant though, when I listen to it and offer some compromise it will reward me.

I learned a hard lesson over the last few years; when my body tells me something I have to pay attention. This is a good fact for everyone not just the chronically ill. Food intolerance taught me to watch my diet and when I did I was offered improved health. Reducing stress and increasing happiness likewise….

But the fact is, I am still human. I have needs and desires like everyone else, and sometimes my willpower wanes. Through work, yesterday, I was in a psychology seminar at university. It was a serious and fun situation. Psychology is funny like that. When I am feeling emotionally weak one of my voices in my head tells the other voice all the reasons why eating that food would be a good idea. Voice #1 centres her debate around the central idea that immediate gratification is the Most Important Thing in the World. Voice #2 is very open-minded; she knows the risks attached but she wants to be convinced that it will be okay this time, and sometimes she falls into that big fat manhole.

I was convinced by #2 that buying candy for Halloween was a good, altruistic movement, and a way to celebrate the season we are in. The third voice, some way back in my cranium, was completely hushed when it told me this isn’t a good idea. Democracy is a thing to uphold and so voices #1 and #2 won the majority vote. But like any conniving, sly politician at the top of his game, they were not happy stopping there. In fact, they were not happy until all of the candy was gone…

… and so today I woke up after a very poor, broken, vivid sleep and as soon as I looked around the room I knew I was not going anywhere. But that is okay. It doesn’t matter. I havent had a ‘bad’ day for a little while so I am more accepting of them when they happen. Getting better is a journey, and like with any journey there are lots of bends and bumps in the road.

What’s your day like today?

Shout out!

Thank you to everyone reading my blog – I hope that it can help some of you in any small way. I would love to hear your feedback on what works for you, and what doesnt. Please dont forget to like my blog so you can get regular posts in your reader on wordpress.

I also run a couple of ME pages on Facebook.

I have a Surviving ME Quotes page, which is quotes with a positive theme running through them, helping us to look on the brighter side of this chronic condition. 

I also run a page called Surviving ME Diet Tips where I post short, snappy diet tips that can help you to manage your condition better. The tips also serve as general nutritional advice.

Please please please like the pages if you are on Facebook and help me to raise awareness of how to manage this condition. 

I also have a page for this blog here on Facebook!

And a Twitter page here.

Many thanks!

My Wellness Diet

A couple of years after being ill I realised that food was the culprit and embarked on an elimination diet. I found my intolerance to be wide-ranging and the following foods were the only consumables I could eat without getting ill.

Everyone with ME/CFS will have a slightly different reaction to things they eat and so this will not work for everyone but it a good place to start if you are looking to improve your health.

Coconut oil
This is a fantastic source of instant energy and due to its medium-chain fatty acids will absorb into your blood stream without the need for complex digestion. Coconut oil is well respected for helping to heal ill-heath and it’s no wonder why when it is anti-fungal, anti-bacterial, anti-microbial and anti-viral.

Brown rice
It’s really difficult to find carbohydrates that ME/CFS sufferers can tolerate. It is because when broken down carbohydrates turn into sugars (glucose, fructose) and this is what we react to. With this in mind it is important when eating sugar in the diet to choose complex carbohydrates. Brown rice gives this and it is also a great source of fibre, something us ME/CFS people are usually short on when we are eliminating food intolerances.

Rice cakes
There are some reports online that rice cakes are not good for you. This is because they are apparently high glycaemic (food that can raise your blood sugar levels). I am not convinced of this because while white rice is a medium glycaemic food, brown rice (which rice cakes are made from) are low. Additionally, experts now say its next to impossible to raise your blood sugar enough to encourage appetite. I personally rely on rice cakes as a staple food. Another source of complex carbohydrate that helps to fill me up and keep me regular.

Herbs and spices
When you have ME/CFS it is very difficult to flavour food. Due to wide-ranging intolerance (dairy, sugar, gluten, soya, etc) it is very difficult to rely on anything processed including pre-made sauces that you may have on food to take away the blandness. With this in mind it is very important to add fresh (or powdered) herbs and spices. Not only can it help your food to come alive but they have vital minerals and nutrients (that you may be missing out on in your elimination diet) packed inside.

Mushrooms
Over the course of my elimination diet, I have really struggled to find vegetables that I do not react to. This is because when broken down vegetables are sugar so the body cannot digest properly. However, mushrooms are one of the few vegetables I do not have a problem with. They may taste of nothing and not be the most filling of foods but they are jam-packed with vitamins and nutrients making them a go-to snack at any time of the day or night.

Lettuce 
Lettuce is not something I would automatically gravitate towards however with it being one of only two vegetables I could tolerate I would find myself reaching for it in the supermarket. It’s quite a handy and healthy vegetable and will help you reach that all elusive ‘five-a-day’.

Nuts and seeds
While it may be tempting to go for the salted and otherwise flavoured varieties, it is best to go for the plain versions. Nuts and seeds have lots of vitamins, nutrients and minerals packed inside. They are a great source of protein and healthy fats and can help to keep you sustained throughout the day. Its wise to limit the amount you eat however as weight gain may occur otherwise.

Eggs
In the past eggs have been reported to raise cholesterol but latest research says that wont happen. Due to restrictions eggs feature every day in my diet because they are satisfying (due to the fat in the yolk) and high in essential vitamins and nutrients, especially vitamin B12 (great for reducing fatigue).

Goats and sheep’s cheese
Goats and sheep’s cheese is a fantastic alternative to cows milk cheese because it is processed much more simplistically by the gut and as a result most ME people will not suffer for eating it. It is important to look on the nutritional information and chose a product with no carbs (or under 1%) and if you do you’ll get heaps of benefits such a calcium and protein.

Bananas
Bananas were one of the few fruits that I could tolerate as long as I restricted the amount I ate. They are a great source of starchy carbohydrate, have plenty of potassium and fibre, not to mention lots of vitamins. The more bruised the banana, the more goodness you will get from it

Dealing with Food Intolerance and ME/CFS

There are a few different sub-sets of ME (also known – quite ignorantly – as Chronic Fatigue Syndrome) and this means that although overall ME is an umbrella term for a set of symptoms which all victims of the condition experience, the root cause of the suffering has a few different origins. It may be biological, genetic, infectious, or – in my case – related to stress. There is a large section of ME patients who are intolerant to a number of foodstuffs, and in my opinion it is these people where stress and possibly anxiety are at the bottom of why they are ill.

The reason ME patients become intolerant to foodstuffs (popular cases are gluten, dairy and sugar) is because the body has become so overworked from their every day lives and their physiological reactions to stress have taken its toll. It is well known that IBS (Irritable Bowel Syndrome) can be caused and aggravated by stress; what ME is in this subset is actually extreme IBS. The only way to deal with IBS is to avoid the foods causing problems, and when this is achieved over a long period of time, normal health should return.

If you have ME and you are highly intolerant to a number of foods, you should embark on an elimination diet without fail.

The main problem with restricting your diet to fix ME is that the intolerance is wide-ranging and all encompassing. It’s very hard to stick to a diet where the only carbohydrate you can eat is rice, no sugar at all – not even in fruit and veg – and no dairy either. It’s even worse if you have problems with oats and soya as well, like me. However, the fact remains that if you want any semblance of your former life as a ME sufferer then you need to embark on this.

It’s not all bad.

As ME sufferers we are lucky because we are intolerant, nor allergic. This means that if the culprit food is avoided, over time it should disappear. If we were allergic this would not have been the case. So while you need to restrict your food and be super controlled, this will not be for the rest of your life – as long as you are strict for now and as long as you work on reducing your stress in your life.

I talk about this from a position of experience. A little over a year ago I worked out diet was the problem and restricted my food intake. The results are that I am a lot less intolerant than I was. It is going to take longer than a normal intolerance but if you stick with it then you will get better.

You have to be vigilant though. I would always test my intolerance every few months and invariably I would get very ill again. However, much further down the track I have noticed that my reactions have taken on an evolving behaviour. They have slowly but surely changed in their symptoms. For example, I used to always be fine eating a food until the following day when I’d woken up. However, shortly before I begin to cope better with a food I have noticed that the symptoms started to begin the same day. But eventually they do go away completely.

One thing I have noticed is this: the foods that I had the most trouble giving up (and thus fell off the wagon with the most) are the foods that I am most tolerant to down the line. Although this suggests exposing yourself to your intolerance helps to fix it, I still believe it is important to avoid those foods as much as possible in the interim. It is important to reclaim your health and get your life back on track and the best way to do it is avoid those foods that cause problems.

However, food is not the only key to unlocking your health with ME. It is vitally important to omit as much stress as possible. This can mean emotion and physical. It means if people are causing your stress, take a step back. If you have other emotional problems, do what you need to in order to stop it hurting you. A big thing for me was to stop letting people’s attitudes towards the condition affect me. And possibly look at the ways in which you are handling stress, and if you feel this isnt healthy look into CBT counselling or NLP training. I have heard that EFT is helpful, too. Additionally, if you are doing too much physically – at work, or at home – then step back and give your body time to repair as you fix your diet. Although, that does not mean you should not do any kind of exercise – its always good to keep your body moving as much as you can. I should only ever be as much as you feel capable of on any given day though. The more you fix your diet and stress levels, the more active you will want to be each day.

If you suffer with fatigue, sore throats, flu symptoms, post-exercise fatigue, brain fog, depression, anxiety and all of the other symptoms of ME… and you follow my advice, the chances are it will all go away!

It certainly did with me. It hasnt gone away completely, and when stressed and eating badly comes back more aggressively but when I follow my own advice all of those symptoms disappear. As a result I am about 80% back to health, and you can be too.

Disclaimer: I am not a medical professional, any advice I give here is based on my own experiences and anecdotes of others. You should always do your own research into elimination diets and ME and come up with your own results. Contact a medical professional if in doubt.

ME/CFS Recovery Q&A

As I am about 80% recovered from ME/CFS, I have decided to do a Q&A post to address some of the ongoing issues of dealing with the condition. I asked people on a number of ME/CFS groups on Facebook what they would like me to discuss and there were some recurring themes so here they are. For future reference, I now have a page on my blog set up for people to leave questions for me which I can approach in future posts. So if you have any questions do not hesitate to leave a comment.

 

What kind of diet do you recommend as I just try to eat really healthy but I find when I’m ill I just want to eat anything that’s convenient? Thanks in advance.

In order to re-gain your health I would recommend an exclusion diet. This means you strip back your diet completely and slowly include other things to judge whether your body can cope with them. The way in which I did this was I ate only: brown rice, coconut oil, eggs, rice cakes, nuts and seeds. I ate this for three days, keeping a symptom diary, then I started to add other foods one at a time. If there was no reaction I continued to eat them and if there was a reaction then I stopped consuming that product.

I found I was highly intolerant to sugar products. It didn’t matter whether it was artificial or natural, it seemed to be all products with over 1g of sugar in them – this includes fruit and vegetables and other carbohydrates. Sugar made me extremely fatigued and confused.

I was also intolerant to dairy. I would say dairy above other types of food (apart from gluten) was probably the most severe. Extreme constipation and wind, sinus problems, bloating and pain. Once I omitted this, it all disappeared overnight.

Gluten was another type of food I needed to avoid as this caused me to be completely disabled for two days after eating, suffering from manic depression, getting flu symptoms, confusion and sore throat.

I also needed to avoid soya, yeast and oats. Essentially I could not have anything processed and had to be very careful about the natural foods I ate. The diet I currently eat is: Brown rice, rice cakes, oil, eggs, mushrooms, a tiny bit of frozen mixed veg, nuts and seeds and goats cheese (while goats cheese is technically dairy, the milk proteins are much more easily absorbed than cows milk and so I can tolerate it).

Wanting to eat convenience foods when ill or fatigued is a common problem and not something I have really found an answer to. You could prepare foods and freeze them in advance so that all you need to do is microwave them when you need them but otherwise I am afraid you need to just stick with the diet plan. The one thing I have learned from this condition is there are no quick or easy answers.

Is there anything besides diet that has helped you?

Diet is by far the most dramatic and helpful aspect of my recovery, however there are a number of other aspects towards getting better.

Believing I can and will get better – From the day I knew what I was dealing with (probably even before that) I knew that one day I would get better. I am not sure why I thought this because everything I was reading about ME/CFS suggested my chances were slim – I guess it was gut instinct. Of all the success stories I have since come across, they all have one thing in common; they all knew there was a way to overcome this. I have often wondered why this helps and here is what I have come up with. I think a positive attitude reduces stress which aggravates the condition. Moreover, I think people who believe they will get better do everything they can to speed this up. They will research to within an inch of their lives, they will do everything they can to optimise their heath and they will have an open mind towards what works. Doctors told me diet would not help me but being open to the possibility ended up giving me my life back.

Reducing stress is something else that helped. I don’t expect there is a single person with ME who was not over-stressed at the time of getting ill. When I was first ill I had a phenomenal amount of stress in my life. I wasn’t able to omit it all immediately but where possible I stepped away from it and was mindful of the way I reacted to it. I also tried to improve the quality of my life and the people in it. Over time this has been very beneficial to my recovery.

Getting the rest I need also was a great help. There came a time when I had to face the fact that I could no longer work. It was a scary time because I had no back-up support but getting the rest I needed enabled my body to rest and slowly rejuvenate. The best piece of advice my specialist gave me is – “Leave the housework – it’s not more important than your health, and will still be there tomorrow when you may be having a better day.” (I address pacing later in the post)

Any suggestions for a 9 year old who’s in pain in both arms and legs she’s on no medication?

I am not a doctor or a medical practitioner in any way shape or form so I would not offer advice on pain relief, especially in children.

I can only make the suggestion that you look at the child’s diet because I know omitting sugar and gluten and dairy stopped pain in me. I would however stress that you consult someone qualified in dealing with children’s diets in order to do it safely.

Can you explain pacing and how to begin any kind of exercise while in pain and fatigued?

Pain has never been a major component of my condition. I did suffer a small period of extremely intense pain but diet rectified that. As a result, the following advice is based around fatigue not pain.

I was advised to do pacing and graded exercise as a form of recovery. I would like to state that I do not believe this is the way forward for anyone in the early stages of ME/CFS. This is because it is very structured and you are encouraged to do the same amount of exercise each day despite the level of fatigue. This is not only counter-productive to long term recovery, it is highly dangerous. I did a few sessions of CBT where they got me to do this and I got worse, so be careful if you go down this route.

I do however feel that pacing and exercise were major components to my recovery – but only because I listened to my body and did them on my own terms. I am a very pro-active person who does not find it easy to rest and so every time I had some energy I would be doing things, often too much, and I would pay the next few days. While this seemed discouraging at the time and I felt it was holding me back from recovery, I believe in the long term it strengthened my cardiovascular system and aided recovery. I am not recommending you push yourself to the point where you pay, you should only do what you feel you can cope with, but also do not feel disheartened by setbacks. Every time I have had a setback I have come back stronger.

If you can walk 10 yards today but nothing tomorrow, do that. Over time the amount you can do will increase, and the length of time you need for recovery will reduce. I started off walking around the block and spending four days recuperating; these days I can walk about 8 miles and not pay the next day on a good day.

As you begin to do more each day you will find you need more rest as well. Rather than over-do it and then spend half the day recovering, I would do a bit and then take a rest, maybe for 20 minutes, or any hour, however long I needed. I didn’t have any structure to it and only applied pacing to what my body was telling me. If you want to get better: listen to your body.

I would like to hear about how you managed pacing and how you reacted to “set-backs”. You know, where you think you’re getting better/normal then do too much and can’t move the next day.

I addressed pacing in the previous question so I wont go over that again. However I can address set-backs and post-exertion fatigue.

The major component of ME/CFS is fatigue. This is not tiredness or exhaustion; it is complete and utter fatigue. When the body is protesting to this extent I tend to think it is because it is telling the owner to slow the hell down. It is with this in mind that I always listen to my body and rest as and when I can.

It does however take some time and experience to tune in to what your body is really telling you. Particularly in the beginning you will do things thinking that you can cope because you feel energetic, and then find in the following days you are completely exhausted and unable to function. You may even have a period of a few weeks of feeling well with no symptoms and then suddenly have what seems like a complete set-back (this happened to me many times).

I think you are always going to have set-backs on your road to recovery, this cannot be avoided, so the most positive thing you can do in this situation is to accept what is happening and be aware that it’s a set-back not a revert to square one. And to keep in mind that with every set-back a person with ME/CFS gets they are one step closer to recovery because set-backs encourage rest which makes the body stronger for the future. Being positive will reduce stress and this can only help you.

Disclaimer: I am not a medical professional and any advice offered in this post is based solely on my own experience with ME/CFS. I still have bad days but I am around 80% recovered now. If you are in distress from the condition please consult a medical professional who can point you in the direction of further help.

Your diet controls your condition!

For two-and-a-half years I had sought an answer for what was going on in my body. Anxiety, depression, IBS, I had been through many – and finally I found myself with an official diagnosis for ME/CFS. To say I was over-the-moon would be inaccurate; I was scared, bewildered, frightened, panicked and hungry for further answers. However, the overwhelming emotion was relief – mainly because medical professionals had up until now made me feel like I was going insane. It wasn’t an imagined condition, it wasn’t a mental illness – it was a very real, very physical impairment.

Although ME/CFS is known as Chronic Fatigue Syndrome, it is not just fatigue.There are many conditions where fatigue is a dominant symptom but they do not get labelled as a Chronic Fatigue Syndrome. In fact, the term ‘syndrome’ denotes an umbrella description for a condition of unknown origin. So when the specialist told me ”yes, you do have ME/CFS” – what she was actually saying was: “There is something seriously wrong with you that is causing this set of symptoms, but we don’t know what it is, and we don’t know how to cure it.” She did go on to warn me in fact that while its unlikely my symptoms will get worse, there is a chance I will never recover.

Now anyone who knows me personally know I am not someone who accepts defeat lightly. To be told something like this doesn’t cause me to fall into a heap on the floor it makes me determined to find an answer. I  always felt that no matter what was wrong with me, I would one day beat it, and that is what drove me not to accept the medics opinions when they differed from my gut instinct.

I questioned the specialist further. She told me some patients get relief from a diet free from dairy but its very hit and miss. She said the recommended treatment was a course of CBT counselling and graded exercise. She was aware this was controversial but said she was unable to comment about that due to her position. She did say that there were tests being trialled at the moment which can prove it is a physical condition and they would likely be available in the next few years – which would help move public opinion away from it being a psychological condition (and thus official treatments would be altered).

I came away from that meeting not really any the wiser but happier that I could now have a starting point for recovery. It might be a long way off, but at least knowing what is wrong will give me some keywords to feed to Google.

For the next few weeks I researched ME/CFS tirelessly. I had a completely dogmatic approach to getting to the bottom of what was going on. It didn’t really seem to get me anywhere though, and I kept coming upon dead-end after dead-end.

One day I came across a private doctor online who specialises in the condition. Dr MyHill had apparently left the NHS because she felt unable to treat ME/CFS patients within the remit of NICE (the medical team who determine what treatment is available). She opened up a private practice in Wales and had a waiting list of 6 months. I looked on her web site and she talked a lot about an holistic approach to treating the condition. She said no one thing will work but you need to really look at your diet and lifestyle and change them accordingly. She recommended the Caveman diet (or Paelo diet) because it omits most chemicals and artificial ingredients. I tried this diet and it didn’t do a lot of good. However, I liked her approach – she talked with confidence and power and seemed to know what she was talking about.

She offers tests which can give you a definitive result proving that you do have a fatigue problem (testing the mitochondria among other things) but I was broke and couldn’t afford these. I found an e-book she had written about fixing ones health and I wasn’t very far into when I came across a chapter on supplements.

Up until this point I hadn’t really paid much attention to supplementation. It was a bit new-agey for me. However, by this point I was desperate and anything was worth a try. She recommended Co-Enzyme Q10. I started taking this and I did notice a slight improvement quite quickly but it tailed off, and the effect wasn’t dramatic enough for me to consider paying the heavy price for them.

I read on.

The next thing she suggested was a cocktail of B12 and Magnesium.  I started taking these and within days felt much better. My anxiety was reduced, my food intolerance and fatigue completely disappeared. I was on cloud 9! For two weeks I had my life back! And then the symptoms returned and I was deflated like a hot air balloon whose fire had gone out.

I kind of gave up on Dr Myhill after that but something I read in her e-book stayed in my mind: that some people with ME/CFS are actually suffering from a permeable gut.

I spent a few weeks in a fit of depression, eating anything and everything and getting worse by the day. I could no longer avoid the fact that whatever was going on my diet was a major contributing factor to my symptoms. But I am not a dietitian, or a nutritionist, nor any kind of scientist. I had absolutely no idea what the problem could be.

I re-focused my research towards nutrition. I read everything I could on the subject of food allergy and intolerance. I realised it was intolerance rather than allergy because tests I had done before had come back negative. So I went down the avenue of researching permeable guts otherwise known as “a leaky gut”.

A leaky gut is a term that doctors do not recognise. This is because there has been no clinical trials to prove its existence. So going to the doctor and putting my self-diagnosis, even with a ream of printouts to show my symptoms completely tallied with this condition got me absolutely nowhere.

I was however convinced I had a leaky gut and did my own research on how to cure it. It said you have to go gluten, sugar and dairy free and have a cocktail of supplements including but not limited to very strong pro-biotics. The problem was every time I tried them (and I tried every brand in the shop) I had a strong reaction to them.

I decided to focus on the diet side of things, because that is something I could control. Initially I went gluten-free, sugar-free and dairy-free separately and there were slight improvements but nothing worth writing a blog post about. Then I went vegetarian and ate a very nutritious and healthy diet but I got worse. One day, completely fed up of being in bed for a week, I just decided to cut it all out. I stopped eating anything with gluten, dairy or sugar in it. That included natural sugars, such as in fruit and vegetables too (it took a lot of self-education about nutrition to understand what I was embarking on).

Within two days I was jogging for 30 minutes around the park – and I did not get any effects afterwards. I felt great, better than I had in years. It was clear to me at that moment that I was right – I do have a leaky gut and I am just going to have to avoid these foods.

This, however, was a big ask. All of my life I have had a compulsive eating disorder. I ended up almost 20 stones in weight because I was unable to handle a traumatic event in my life. I then struggled for a good few years to get my diet under control and lose most of my extra weight. At this point my diet was probably the most controlled and healthy it had ever been – but could I give up eating anything remotely tasty for an indefinite amount of time, possibly forever? Unlikely.

So what I had to do next was work out exactly what was causing my problems – what food was I “allergic” to? I continued with my self-made elimination diet and began to keep a food and symptom diary. The results were life-changing.

Here is what I found out:

  • Whenever I ate a symptom inducing food, the effects did not show up immediately – instead they always occurred the next morning after I’d woken up from a long sleep.

  • I found that sugar – and it did not matter which kind (fructose, sucrose, artificial, natural etc) caused extreme muscle fatigue, headaches and confusion. The effects would last for 24 hours once they set in the next day.

  • I found that dairy caused bloating, constipation, wind and sinus problems. Not to mention flu symptoms.

  • I found that gluten was the most evil of them all. It would cause EXTREME cardiovascular fatigue, orthostaic intolerance, headaches, confusion, depression, flu and sore throats. Not only all of that but the effects would last 48 hours, not 24.

  • I also found that soya and yeast were causing problems, and there was nothing processed that I could legitimately eat and be well with.

  • I was left with a diet of eggs, oil/fat, nuts, seeds, fresh fish and meat, brown rice, rice cakes, goats cheese, mushrooms and a tiny portion of frozen mixed veg. That was all I could eat if I wanted to be well. If I stuck to this, it was as if I never had ME. But to this day I have not managed to stick to it wholeheartedly for more than a few days.

So these self-trialled results were mind-blowing but still continued to frustrate me. I couldn’t take supplements or medication due to the lactose and other sugars in them so I was worried about having such a restrictive diet. Do I eat this diet and feel better now or do I eat a more widely nutritious food-plan for longer health? There was and is no right answer, the decision has to come down to personal preference.

I decided that for the most part I needed to try and stick to this diet. And when I did I was well. Any time I fell off the wagon I paid the price the next day and as soon as I jumped back on it I got well again. I was so glad to have some relief from my previous symptoms. I’d gone from crawling to the toilet to jogging regularly. And I was starting to get my life back again. I started driving lessons, dating again and eventually embarked on some part-time volunteering in a charity office (which I am still doing now).

Where the doctors had failed me; I had succeeded.

Obviously though I could not be happy with a life of eating so strictly and continued to continue my research. I wanted to know WHY I had a permeable gut – because if I could work out why then surely I could fix the problem?

There is this belief that the gut with all its neurons acts as a second brain. This means that the gut is actually acting out when something is wrong in the body – in much the same way that things go wrong when the brain senses something isn’t right. So if I have a permeable gut, it is because something in my body is causing it. I’d read that anxiety could do this but I wasn’t ready to accept that. I had spent years trying to convince everyone and their dog that ME/CFS was not a mental disorder and if anxiety was to blame then its as good as throwing all my (and everyone else’s) campaigning out of the window.

I also didn’t buy this because I had tried many anti-depressants and they all made me worse not better. However, I now realised it was the other ingredients in the medications causing these issues, not the drugs themselves. I stuck with the idea of a permeable gut being a physical problem and hoped that a few more months of restrictive eating would offer me the relief I was looking for.

Then I was chatting to a friend one day and she told me that Amitriptlyne (the anti-depressant try-cyclic drug) offers her relief for IBS. And apparently this is because anxiety and stress can aggravate IBS.

IBS, along with anxiety and depression, were the first things the doctors thought of when I started exhibiting symptoms. So this information had me intrigued. I thought back to the time when I got ill and what was going on in my life. I’d had a relationship break down, my best friend of thirty years died, I’d lost almost 100lbs in weight, was over-exercising – and not only that but less than a year before I’d overcome a pretty serious panic disorder that left me agoraphobic. Or, I thought I’d overcome it (the truth was I just managed it).

Suddenly everything became startlingly clear. I had Generalised Anxiety Disorder that was left untreated; this caused IBS to develop which also left untreated and ignored caused ME/CFS.

Bingo. I have the answers to a four-year battle to wanting to know what the heck is going on with my body!

I went and put this theory to my GP and for once in my life he actually concurred. We agreed that if I found a way to manage the anxiety then the ME/CFS symptoms including food intolerance should disappear. However, given I am so allergic to everything I cannot take medication, so this is proving more difficult than it sounds.

I am hopeful though. Because if you track my health from the moment I realised there was a problem until now I am much better. I am doing a lot more. Due to prolonged restrictive dieting my symptoms when they do show up are no where near as severe as they were. While once eating sugar and dairy would have me bedbound, now it just tires me out. Gluten is still as big a problem as it ever was but I have made a lot of progress.

I KNOW its only time until I recover from this thing. I am not letting it have control any longer. I hope that if you have read this whilst having ME/CFS you will take my claims about diet seriously. You might have 101 excuses why you cant follow this diet (I know I resisted it in the beginning) but I think if you do what I did you might be pleasantly surprised. I have assisted a number of people with ME/CFS in doing this and they have all – that’s 100% of them – seem similar results to me. I am not claiming it will cure you and it might not even benefit you but if you want your old life back then its got worth a go, no?

Tell me your story in comments. Have you tried a similar diet and seen results? I’d be very interested to hear your thoughts.

My story with ME/CFS

When I look back over the last few years to try and determine the point at which I developed ME/CFS, it is hard to say with any real sense of confidence. I have put down on record that it started around September, 2009, but the more I think about the past, the more I am convinced my ill-health goes back even further. Developing ME/CFS is difficult to pin-point because while the symptoms are still mild it is easy to dismiss them as nothing important; “a bit of flu”, or being “worn out”. It isn’t really until a sufferer is actually suffering to the point that the illness impacts on their lifestyle that it is deemed to be a problem. And that is usually the point at which we tend to assume we got ill – but ME/CFS is likely to be a build-up of a number of internal issues and only becomes clear to the patient when the body is saying, “hang on, something has to give!”

I had been getting flu fairly regularly…
… for a while but I had been exercising a lot, so it was put down to that. Then, I remember, one day I was in the gym, sat on the rower and I just thought I do not have the energy to pick up the handlebar much less do any exercise. I spoke to my fitness instructor and told her that recently after exercise it was taking me three or four days to recover; that I was frustrated because I couldn’t manage to exercise every other day like everyone else. She told me she had not come across this before but to persevere and see my doctor if it continues. I gave it my all (which wasn’t much) for a few more minutes and then gave up and went home where I flopped onto the sofa and did not move again for days.

If you are reading this as someone who has never had ME/CFS then you might think ‘great – sofa time!’ but there is nothing more frustrating than laying down unable to physically get up when there is nothing wrong with your brain, and it keeps reminding you of the 101 things you should be doing.

I spoke to my GP who dismissed it firstly as a bout of flu, then as over-doing the exercise, and then when I calmed down the exercise – at their request – depression. I have suffered with depression all of my life – I know depression, this wasn’t it. The difference is when you are depressed you don’t WANT to do anything but are physically able; with ME/CFS you want to do everything but cannot find the energy. My doctor wasn’t convinced, however, and decided that the recovery method was anti-depressants.

I am not a fan of anti-depressants at the best of times…
… least of all when I don’t even feel depressed but I was keen to get my energy back and stop getting bugs so I gave it a go. As soon as I started taking them I instantly got worse, depression set in and the fatigue became worse. So I took myself off them. I told them doctor this and insisted again it was not depression.

Around this time I started working in retail. I’d gone from not working at all to taking on two part-time jobs at the same time. I was out of the house for 13 hours of the day on some days; I am sure this did not help matters. At one of the jobs, colleagues started complaining of my bad wind. One person described it as smelling “like a sewer” and they were right. It soon dawned on me that I was suffering from some kind of food allergy or intolerance but what was causing it was anybody’s guess!

It usually happened after eating oats for breakfast so I thought of the obvious culprit – milk. I became convinced I was lactose-intolerant but when I tried the lactose-free milk it continued to happen. I spoke to my GP again and told her of these new developments. She diagnosed IBS, telling me that oats can be quite binding in the gut, and to avoid them. I did as she said but still I was getting the wind problem. Not only that but my stomach was extremely swollen, I was very constipated – to the point of tears and rolling around on the floor trying different yoga positions to move things along. Nothing I tried worked. I asked the doctor to test me for food allergies; a test for Celiac and a milk pin prick test came back negative. The allergy consultant told me my symptoms were probably results of having lost a lot of weight quickly and to avoid trigger foods for a couple of months and then I would be okay. This wasn’t the case and I ended up leaving that job because I’d become a social leper.

Is it all connected?
This is the point where I started to wonder whether my flu symptoms, my fatigue and my food intolerance were connected, but I did not see how. And when I put this to the doctor she re-assured me it was just coincidences. I did however manage to convince her to send me to a dietitian and the dietitian assured me I have a very good diet and diet was highly unlikely to be the cause of my problems.

I continued to exercise and work at my other job but some days I could not get out of bed. I had to take a couple of days off work and was being threatened with disciplinary action. I went back to the doctor again and this time demanded further investigation – something was wrong, it could be anything, I was starting to get really scared. I had extensive blood tests and still everything came back normal. My doctor told me, “You have a very strong immune system – you are the picture of health.” I replied with – “then why do I feel like rubbish 80% of the time?” She has no answers.

After that, I kind of gave up going to the doctor. They were just as clueless as me. Depression started to kick in, I stopped watching my diet and within days I was completely bedbound. I remember laying in bed, unable to move, feeling desperately isolated. A thought came into my head: ‘This fatigue feels chronic… isn’t there something called Chronic Fatigue… I am sure there is?!’ As soon as I was physically able I went and looked it up on the internet and was shocked by what I found. The NHS website listed ten possible symptoms of Chronic Fatigue Syndrome and said if you have two or more to consult your GP. I had eight out of the ten.

Back off to the Doc then!

I put my self-diagnosis to her and she shot me down in flames. She said it’s a very rare, very specific condition, and highly unlikely that I have it. I pushed her on my symptoms. She reluctantly put in a referral to a specialist whilst repeatedly warning me that I do not have CFS. She claimed again that I was depressed and needed medication. I refused; my patience was wearing thin with that diagnosis by this stage.

Around this time I moved house because work was an hour away on the bus and I was not coping with the journey and the four-hour shift, which was very manual. This also meant I had to change doctors. You’d think this was a good thing but no! My consultations went from bad to worse!

Moving helped but I continued to get worse to the point where I didn’t feel like I could continue working. I felt I had no choice however, I am single, with a son to raise – where would I get my money? The government would be unlikely to support me if I gave up work. I researched my rights but couldn’t really find much so I plodded on. Then I developed Orthostatic Intolerance, basically this is a heart condition where the patient needs to lay down – sitting in an upright position becomes extremely difficult. I had to get signed off. I went to the new doctor. I remember the day well. I was sat in the waiting area, it was busy, I really needed to lay down but thought the other people would think me mad. I was on the brink of tears from sitting up. I went into my consultation and I got more crap about depression and she really pushed drugs onto me. I refused. I told her I need time off. I think I have CFS and I am not coping with dragging cages around at work. She told me in no uncertain terms that I do not have CFS, I am depressed, and she will not sign me off because not working is the last thing I need. I told her if you do not sign me off, I will have to hand in my resignation. “Well then,” she said, “that’s your decision”.

Excruciating pain!
The following week I developed the most excruciating pain I have ever felt in my whole entire life – and I have given birth to a 8lb 5oz baby! It started in the middle of my back, beside my shoulder blade and got worse over a few days. The pain traveled down my right arm and I could not lie down to sleep. Painkillers did not touch it. It happened over the weekend and I ended up calling the Out of Hours doctors but they wouldn’t come out and I couldn’t get to them. Monday morning as soon as the surgery opened I was over there trying to get medication or an answer. They told me it was a trapped nerve and said to get some codeine from the chemist. I did so and got very ill – vertigo and sickness – to the point where I almost took myself off to the Emergency Room. I thought I was dying. I did not sleep for two weeks because I couldn’t lie down and I ended up signing myself off work for my final week because the doctors were being completely heartless.

Eventually my appointment came up to see the ME/CFS specialist, on the same day I had a job interview for a full time admin position. I still had in my head that I was imagining all of this and being lazy not working so was trying to find a non-manual labour job. My specialist took my details and asked me some in-depth questions. Then she put her pen down. She looked up at me and said:
“From everything you have said, its clear to me that you do not have depression. You have Chronic Fatigue Syndrome. Any idiot can see that.”

I cannot tell you the sheer relief I felt to at long last make sense out of everything.

“So,” I asked, “I am not going mad? And this isn’t all in my head?”

“No, it most definitely isn’t. And you most definitely are not mad. You are very ill; with a very serious health condition. And I do not think you should go to this job interview, you need to go home and take it very very easy.”

This was the point at which my life started to improve. In the next post I will talk about my research and how I started to climb the steep ladder to recovery.