A bit of a break as I was organising “The Big Sleep for ME”.  I will post another article about that but I am extremely pleased as it went well.  So a happy girl but still recovering and sleeping quite a bit – but that is ok and I did expect that.

So a bit of an update.  I must say before and during The Big Sleep which was on 12th May I was a bit stressed and then the ME became worse as I did overdo it massively.  So yes there were foods which I regretted eating on most occasions plus they did not fill me up so I just wanted more food – such a vicious cycle – as also the ME just got worse.  I do notice that when I eat foods that are not nutritious, then often they do not fill me up and just not satisfying plus I want more of the usually sugary taste.  I do keep a permanent stock of home made frozen soups for such occasions but sadly I did not reach the freezer on time.

So I am also happy that I am back onto Paleo now and will be starting a new stage of Wahls Paleo Plus (WPP) which was designed by a doctor with progressive MS whom it helped immensely.  So I will be getting onto that regime in a few days and having started the build up by introducing increasing quantities of foods favoured by WPP.

But to date I have done the isolation eating regime and then reintroduced foods.  I do have some intolerance to a few dairy products and although not extreme I am limiting dairy and sticking to grass fed dairy when I do eat it.  Tomatoes which are part of the nightshade family are playing a smaller role in my diet.  It is one of those strange things that although I do not feel I have any allergy or intolerance I am concerned that they may contribute to a “leaky gut” and I have a “gut” feeling that they are not good for my particular body.  So at present I am rarely eating tomatoes despite their being a favourite food.  Otherwise it seems I can eat virtually all food groups.  I am not reintroducing gluten or grains in any shape or form.  If I need to deviate if / when there are no alternatives then I will eat if I have to and occasionally if I need to.  I do react to gluten.  I have not identified how exactly it affects me but I do know I feel sooooo much better without any gluten.

Garlands Organic, Greens of Pangbourne and the farm shop in between Tidmarsh and Theale are proving to be great sources of various foods.  Garlands Organic has been amazing with seemingly selling everything that I have needed to date – from almond flour, my increasing purchasing of coconut oil, coconut yoghurt, Kefir, proper sauerkraut amongst other products – I ask and they seem to have it there – so amazing and also at good prices.  I have bought loads of nuts and seeds there over recent years and always at competitive prices.

One aspect I am sticking to is Paleo as a simple way of eating foods not out of a packet – if it has ingredients which are not “whole” i.e. in ice cream you would expect eggs and cream but as soon as you get emulsifiers, preservatives or other additives flavourings then it is not natural.  The thinking being is that our bodies evolved to eat whole foods and the rapid change in foods in the last 50 years is messing up our cells at a basic level.

For me it is all about eating “nutrient dense” foods” (new buzz words!!).

So for example eggs which have been on and off the “what is right to eat menu” are definitely on the menu at present.  They are amazing with what they offer nutritionally.  Plus they fill me up … for breakfast today I managed 2 scrambled eggs, beetroot, spring onions chopped with fresh coriander and a huge mountain of spinach – truly 3/4 of a large bag (part of the next stage of eating), some chicken and a piece of bacon – all cooked in coconut oil (also on the increase).  Back to eggs and why I eat them apart from loving the taste …

Eggs are extremely nutrient dense containing most vitamins although not vitamin C and is a good source of all the B vitamins, a rich source of vitamins B12 and riboflavin (vitamin B2) and a useful source of folate. The egg is a good source of the fat-soluble vitamins A and D and provides some vitamin E.  Eggs have minerals needed for health and are an excellent source of iodine, required for the thyroid hormone, and selenium (important for ME sufferers – an important antioxidant). Plus eggs are a significant source of phosphorus required for bone health, and provides zinc, important for wound healing, growth and fighting infection. Eggs also contain some iron needed for the red blood cells.

The 9% fat in an egg is found almost entirely in the yolk and most of an egg’s fatty acid composition is monounsaturated (approximately 38%). A further 16% is polyunsaturated and 28% saturated.  Eggs are rich in long chain omega-3 fatty acids and a useful source for people who do not consume oily fish. An average medium egg provides about 70mg of omega-3 fatty acids.

Eggs also contain cholesterol and lecithin, fat-like substances essential to the structure and function of the cells in the body. However these substances are not dietary essentials, as our bodies are able to synthesise them. Cholesterol helps to maintain the flexibility and permeability of cell membranes and is also a raw material for the fatty lubricants that help to keep the skin supple. Cholesterol is essential for the production of hormones, cortisol, vitamin D and bile salts.

Fat v low fat – I found the interesting article below

Along with the change in sugar fat is suddenly at last being recognized as not quite as bad as it was made out to be.  Obviously eating the right fats is important.  But the years, probably decades, of the low-fat message is so ingrained in most people’s head that it may be difficult to believe it at first… but there is good science to back up the safety of consuming a higher-fat diet.

A large meta-analysis regrouping 21 studies involving 347,747 followed for up to 23 years showed that there was absolutely no relationship between cardiovascular diseases and saturated fat intake, as published in the January 2010 issue of the American Journal of Clinical Nutrition. (1)

Moreover, many studies clearly show that a high fat intake, in the context of a lower carb diet, is beneficial in terms of:

• controlling appetite and weight,
• reducing triglycerides, blood pressure and inflammation,
• elevating HDL cholesterol levels, and
• increasing LDL particle size, making them less atherogenic (large, fluffy LDL particles are less likely to stick to your arteries compared to the small and dense LDL particles often associated with high-carb, low-fat diets). (2-7)Still scared of fat? You can learn more about the science, history and politics behind the dogmatic acceptance of the “heart-healthy” low-fat diets, which Gary Taubes covers meticulous in Good Calories, Bad Calories. (reference 4, but you can read a brief version in reference 5)
• Fat facts
• If fat and cholesterol do not cause heart disease… what does? Most likely, elevated blood sugar levels, trans fats and easily oxidized and unstable omega-6 fatty acids found in processed fake “foods”, which contribute to inflammation, now thought to be the root cause of many of today’s chronic diseases.
  • Eating more fat won’t make you fat! For at least 4 decades, nutrition and health surveys show that people have gradually decreased their fat intake by choosing low-fat products, avoiding red meat and butter and replacing their fat with more carbohydrates, mainly from grains and sugars. But this low-fat, high-carb diet is not working and obesity, hypertension and type 2 diabetes rates have never been so high… Clearly, the approach we have been using is not effective. It is time to re-evaluate the current dietary guidelines and start exploring alternatives to stop this epidemic, as suggested by the Nutrition & Metabolism Society, an independent non-profit health organization providing research, information and education in the application of fundamental science to nutrition. The higher fat content of the Paleo diet can help you feel more satisfied and less hungry so you can easily reach your healthy body weight without starving yourself
  • Even though animal saturated fats are not the evil most health associations want you to believe they are, most health professionals and so-called nutrition experts are not aware that about half of the fat found in meat, chicken skin and even bacon is actually “heart-healthy” monounsaturated fat! (6) You can look in any reliable nutrition database and find that food that are vilified because of their saturated fats often contain just as much unsaturated fats. Here are a few examples:
    • 44% of the fat in rendered chicken fat or chicken skin is monounsaturated and 21 % is polyunsaturated,
    • 48% of the fat in duck fat is monounsaturated and 12% is polyunsaturated,
    • between 45 and 60% of the fat in a steak is unsaturated,
    • about 50 to 55% of the fat in pork is unsaturated,
    • 48 to 50% of the fat in bacon and lard is monounsaturated and 10% is polyunsaturated, and
    • almost 40% of the fat in butter is monounsaturated.Do not worry too much about your fat or carb intake on the Paleo diet. Focus on eating REAL FOOD!

Nothing is black and white with food and it is time we stop talking only about macronutrients, grams of sugar and percentage of fat… we need to start talking about eating REAL FOOD!

Foods with a higher saturated fat and lower polyunsaturated fat content are more stable and less susceptible to oxidation. For example, tallow, lard, coconut oil, ghee and duck fat are suitable for cooking your meat and vegetables, while extra virgin olive oil, avocado oil and macadamia oil should be reserved for cold use only (to drizzle over your food or prepare a homemade salad dressing or mayonnaise to accompany your meals)..

• Even though increasing your fat diet may increase your total cholesterol, it will be mainly due to an increase in your “good” HDL cholesterol. Your triglycerides, another type of fat circulating in your blood, is likely to lower when replacing carbohydrates from grains and sugars with fat from meat, coconut oil and avocado. While your “bad” LDL cholesterol is likely to stay the same or even increase a little, the size of your LDL particles will change from being small, dense and very sticky (atherogenic type) to a less dangerous large and fluffy type.  Inflammation levels (associated with auto-immune illnesses), usually measured with CRP (or C-Reactive Protein), are often reduced when switching to a lower carb, higher fat diet like the Paleo diet. You can make sure you get enough fat at each of your meals while following the Paleo diet by:
• Ready to give it a try?
• choosing fatty cuts of pastured meats (but avoid fatty cuts of conventionally raised meats because of their high pro-inflammatory omega-6 content);
• eating eggs (not just the white, you NEED the nutritious yolks!) regularly;
• using generous amounts of ghee, lard from grass-fed cows or coconut oil to cook/fry your food;
• serving your vegetables with butter or ghee;
• adding a few slices of avocado to your salads;
• including bones and bone marrow when making stews;
• preparing curries with coconut milk or coconut cream;
• treating you to a few slices of bacon (ideally nitrate-free and from pastured pigs or wild boar);
• dipping your food in homemade mayo (made with healthy oils) or guacamole; or
• drizzling you vegetables and salads with extra virgin olive oil, macadamia oil or homemade salad dressings made with health fats.

If you were used to eating a low-fat diet, make sure you increase your fat intake gradually when starting on the Paleo diet to help your body adjust by secreting adequate amounts of digestive enzymes. Some people may benefit from taking supplements of digestive enzymes and ox bile to facilitate the digestion of fat. Consult a health professional for advice in this regard. END OF ARTICLE

I must say when I eat Paleo I am now full and my appetite more than satisfied.  So that is fab.  It is great to also shed a few pounds.

Right more sleep needed but otherwise doing ok.

As part of my proper eating (yes today is Easter day and I have strayed but back on course tomorrow) leaving processed foods behind I am going for the nothing added, more gained, approach.

In the new year I gave up processed foods but I have also veered right away from those sugary drinks plus any sugar unless naturally in food such as fruit.  Having never been a tea or coffee fan – just hot chocolate – I had always drunk sugary squash … I did wonder about my continual thirst and craving for sweet stuff – literally a habit of a lifetime.  Also out is juice!  I will on a rare occasion allow myself a smoothie but only on special occasions – possibly in the summer as an alternative on a hot day.  If I want orange juice then I will eat the whole fruit (minus the skin – find it bit chewy) and the same with apple juice – forget that – I will eat the fruit and drink water if thirsty.  I am becoming a firm believer in letting my body sort out what it needs from the fruit rather than giving it an orange juice sugar rush without the benefits of the rest of the fruit – plus of course whatever the processed system has taken out and then put back in – usually a few lovely additives.

Processed for me will only mean me making something like an avocado dressing out of natural and whole ingredients.

I am not sure but I do feel with all the rubbish and junk my body has absorbed over the years that I may have given myself what is known as a “leaky gut” which may have triggered or worsened the ME.  I have no idea at all if this is true but again with this approach I am aiming to heal my body to give it the best possible chance to heal.  I will explain more about a leaky gut in a separate post with all the ramifications and problems that it can cause.

Part of this process is healing the gut with the right food and liquid.  This includes fermented saukeraut, kefir and bone broth.  The bone broth totally home made with organic previously happy chickens.  A long hot and slow cooking up of the whole chicken including the feet, head and a few other less seemingly yummy parts.  I do feel that somehow I am moving back in time with getting back to basic and real foods.

My aim is to make sure that everything I eat is nutritious as well as tasty plus avoiding empty calories and generally if it is in a box, can or package with more than one ingredient then I am not buying it.

My intake of healthy fats is on the up – lovely grass fed butter, ghee, coconut oils, avocado and the right nuts and a few seeds.  I have noticed when having my scrambled eggs with spinach all cooked in ghee or butter with a portion of organic meat that I really feel satisfied and do not become hungry and therefore do not crave any snacks!

Cutting out grains and cereals has not been a hardship at all.  I had already cut out most carbs as well and was using rye bread in the past if I felt the need for bread.  Happily we are now onto much better things such as banana bread made with almond flour – it is gorgeous – but no I have it as an occasional treat and not for breakfast.

It is also interesting to move away from the convention of eating for breakfast cereals, toast, fruit and juice.  A good breakfast of meat, veg and eggs really keeps me going for a long time.  I am using berries, nuts with on occasion a blob of organic plain yoghurt as a light end of day small snack / meal usually along with the bone broth.  However, I am going to try the bone broth on occasion to kick the day off.

My main meal of the day frequently includes herrings / salmon / prawns / trout / poultry or other meat, a selection of vegetables or salad including watercress, spinach, rocket, lettuce, avocado, cucumber, spring onions – but currently keeping away from tomatoes (part of the nightshade family – another story for another day).  I am ensuring I have a good portion of the fish or meat as my main protein intake plus as much as I feel I need of the salad and / or veg.  Again I have not felt hungry for a good number of hours after with cravings seemingly vanished.  As I have no processed foods I have increased my salt intake with my food but using pink Himalayan salt which offers a range of minerals and again has not been altered.

I have reintroduced eggs and some dairy into my diet plus nuts.  Eggs absolutely no problem at all.  I think I may have a bit of a reaction to some nuts and again am trying to work out with dairy what I can tolerate and works with my body.  Extremely happy that I am happy with eggs as I love them plus a great versatile food to utilise in cooking.  I think the nut problem has been caused by one of my “off piste” experiences so I need to isolate and work through what is going on there.  Again “off piste” with the dairy reaction, so that will take more time and work before I can figure that one out.  Easter eggs today will be absolute no help.

What I am finding I need is to keep reading up on what I am doing, utilising other’s experiences, and incorporating their methodologies when I have inadvertently veered off.  The Whole30 has been a great read and I will be doing 30 days of that regime post Easter.  What I have also found is that I need clarity and numerous lists!  I am a list person who for some reasons writes out, rewrites and even writes out again what I am doing.  I keep an emergency list posted to the fridge door and on my iphone to help keep me focused.

Lacking the ability to exercise (I still desperately miss exercise) does not help, or it could be the ME / PoTS not helping – or a combination of the two.  Exercise helped me considerably with discipline, focus, stress alleviation and overall good health.  Having this taken away from me therefore has robbed me of all of the above.  A bad ME / PoTS day leads to stress and pain, plus more emotion and in turn to bad eating.  Plus with my pre 2014 eating regime I had ridiculous cravings and immediately went for the chocolate “feel good factor” time and time again.

The exercise bit I cannot fix.  I am hoping that at some point – after forthcoming tests – that I might be able to deduce my anaerobic threshold.  I head about a woman living with ME in the US who is doing tiny tiny movements over seconds whilst lying down that maybe moving forward on the exercise front (just not the type known to non-ME people).  At present though my heart rate is too high to even attempt any “moves” on this front.  Time will tell.  I do hope that my recently purchased off road mobility scooter will give me back some of the feeling of exercising outdoors with the fresh air and sensation of freedom.  Just another waiting game as we need an vehicle with a ramp to move the mob scooter!

Sometimes there are days that defeat explanation – although as I ate “off piste” yesterday, then maybe that explains today, or I talked too much yesterday.  If I had tried walking, been over exerting then it would feel explainable but I cannot identify anything that would mean this sort of “flare up”, but this is the way ME can represent itself.

With the ME on occasion – usually for me 1-2 days a week – can be more – I just cannot stay awake and must must sleep.  This morning was one of the days.  The good aspect is that mostly I am not in pain, numbness and tingling all over.  The frequent negative is that I have breathing problems, a high heart rate, heaviness all over and feeling of total exhaustion.

I just about woke up when Chris was getting ready to leave for work, semi conscious of the dogs landing on the bed, brief fight for space and duvet with Ella, then out cold.  I did not wake up again until 1300, knew I must get some fluids in.  That was a major effort as it does feel extremely difficult to move my limbs, horrible dizziness and feeling of about to collapse.  But drank some water, ate a non-Paleo snack and then crashed again until 1730.

Each time I woke up I checked my heart rate – it was between 120-130 bpm, which I then also take as a sign that my body must rest and is struggling.  It is a scary symptom along with my heart jumping a bit, feeling erratic.  Breathlessness is also not pleasant as it is there all of the time I am awake.

I forced myself downstairs early evening to eat.  Now curled up on the sofa and ready to crash and sleep again.

I have learnt that it is best to give in and not fight.  My body is displaying the symptoms desperately calling for rest and sleep, time for healing.  I have no idea what tomorrow will bring, but hope that I will feel a little more normal!!  Fingers crossed.

One of those rubbish weeks where ME is at its worst. This has meant no socializing at all and just struggling to survive hour to hour plus lots of time asleep. It is not fun and I always forget quite how bad it can be. I forget that ME it can be 100 times worse that just feeling “ugh” (one of my more descriptive and polite words). But it does make me think of others bed bound 100% of the time. There is a “sliding scale” for ME on severity. Unfortunately I am in the 20-30 group which is pretty limiting I must say. (An example of a scale at the end of this narrative).

What does surprise me is how many children and young people have ME. Plus more women than men. Goodness knows what causes it but it does make me wonder about modern living / food / gluten (processed, sugar, additives, preservatives) meat (vaccines, antibiotics) / vaccines / life style and the effects that this may have on our bodies … But we do not know. An interesting book “Epidemic of Absence” has suggestions about auto-immune and modern illnesses with our advances in medicine, changes in life-style and effects on our bodies. Plus hence my eating regime – now Paleo following my isolation diet – I am still re-introducing food groups. Dairy next on the list.

I am not sure if this “flare up” is due to the 2-3 days when I did eat sugar and processed foods. Or is it the Qi Gong experiment (which was done sitting down), the few extra steps I took in meeting a friend for lunch … I do not know but the kick back lasts not just for days but is extending into more than a few weeks.

Pacing is considered to be one of the key ways to manage living with ME. This would mean firstly only do 50% of what you feel you can do. From waking up, rest between activities. For example, after showering (using a shower stool), then lie down quietly for 10 minutes, then sit to clean teeth. Sit on a stool to prep breakfast, eat, and lie down for 10 minutes. The problem is that life is not paced. So when we do activities such as socialising or shopping, it is not easy. Pre-empting resting i.e. bed rest for 1 hour before visitors arrive, can help.

Chris has got used to me sleeping in the car – ear plugs, eye mask, comfy pillow and a blanket accompany us on all outings. Thank goodness for the iPod with earphones for Chris and that I have a very considerate and kind fiancé. Family and friends also seem accustomed to my disappearing act to sleep half way through a get together. I hate saying I feel rubbish as it draws attention so I am horribly rude and just vanish.

One of the most unpleasant symptoms is sensitivity not just to noise but it can extend to visual activity. I have found if someone is talking “at me” particularly intensely, then I frequently start to feel extremely ill, and it increases each and every minute, until I have to find an excuse to get away. The pain is excruciating – my personal description of the symptom is of “needles being dragged over every vein at once” – it is deeply uncomfortable and grim. This also can extend to include visual activity –Chris throwing the ball for our dog Ella – I could not bear to be around as it literally hurt me watching. Weird but true.

The onset of ME is scary as other illnesses are ruled out plus no current medical defined indicators to define the illness. Doctors work through ruling out other illnesses. In Berkshire with no ME specialists to help, it is down to individual doctors recognizing and having knowledge of the illness. My main advice for anyone is to read up on the ME Association or ME Action websites and register on an ME forum such as “Foggy Friends”. I found Foggy Friends in the first few months of being seriously ill and it has been invaluable in my diagnosis and working through the next steps, best medication and knowing more about the illness. Having contact with others “living with ME” has made the illness less lonely. I do not know anybody locally who has the illness and would love some “ME pals” just to sit and vent with.

The myriad of symptoms that affect me include:

• Flu type symptoms – swollen glands, fever, ear-ache, aching all over gradually worsening to feeling horribly sick.
• During and post exertional malaise – where rapid downhill slide often starting with the flu type symptoms but developing from the time of exertion, lasting hours, days, weeks and even months. Exertion from standing for 5 minutes, lifting something that is too heavy – moving a large chair, vaccuming, walking up the garden, cooking, shopping … anything to excess.
• Nausea – hate this one as well.
• “Brain fog” where I cannot think clearly, words become jumbled, slow thought processes and a weird type of headache. At worst I cannot talk – that is scary!!
• Myalgia where muscles are painful and sensitive – sometimes where I cannot even have a sheet touching me.
• Numbness and tingling – particularly in the feet and legs – although at present this is all around my mouth. One of non-painful symptoms
• Tachycardia with high heart rate – waking up this week in bed 120 bpm, palpitations and sort of heart jumping. Every minute I stand my heart rate increases way beyond what it should be. (This can be a symptom of PoTS – postural orthostatic tachycardia syndrome – with high heart rate on standing, many sufferers pass out within minutes’).
• Weird headaches.
• Tiredness but extreme where I have to sleep with the worst exhaustion imaginable – not just whacked at the end of a week – I wish!!
• I particularly hate this one – Breathlessness where it feels like I have to force my body to breathe – no breathing through the nose seems possible, but has to be forced breathing through the mouth – feels like I cannot get enough oxygen.
• Sleep reversal, where it is not possible to sleep at night at all – rarer for me thank goodness.
• Problems with temperature control. Feeling freezing cold even when hot for the UK – yes I can be wearing thermals in the middle of the summer or I go to bed fully dressed with thick sweaters plus the electric blanket on full and I am still cold.
• Forgetting – like now I am sure I may have blogged some of this information before, but oh well I cannot remember, I could check but might just post anyway.
• One I nearly forgot – massive cravings for chocolate!! I usually give in but trying to combat this reaction.
• A few of the joys of “living with ME” and absolutely no predictability.

ME severity scale:

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 – 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

Please, note that “desk work” includes everyday tasks such as sitting at a table to eat or read.

There has been such an avalanche of allergies, reactions to foods plus more and more publicity on the relation between food, a “healthy gut”, our “gut feelings” and the link to our minds but also to the depth of our cells throughout our body

My first step towards my health was giving in to stopping work – basically I was just too ill to even try and continue. So I ditched the guilt and took on acceptance. I think acceptance is also an important step with an illness rather than fighting. However, that is not giving up on getting better, it is learning to live with the way you are second by second with hope that it will improve. Plus on course in building my platform for health for me away from ME.

My next step from 2nd January was to stop eating any processed foods and consumption of sugar. My sugar consumption was not in adding a spoonful to porridge, tea or coffee (which I do not drink anyway), but to eradicate sugar from my life unless it is part of a fruit or added in the form of honey to a recipe, but to absolutely avoid consumption of sugar or see if in a recipe it can be excluded totally or another flavour added in to replace it. I did this with home made flapjacks made of gluten free oats, banana instead of sugar, nuts, seeds, dried fruits (which themselves have natural sugars which are quite concentrated), some grass fed butter and a spoonful of honey. I will work towards a recipe without the honey / dried fruits. I then froze the delicious results and in January enjoyed one as a small occasional treat.

For me giving up sugar, has meant no chocolate, no squash – that was a multi-drink a day staple, no processed foods amongst other things, but also cutting down on the amount of fruit, plus of course no fruit juice!

Actually I did not find this difficult to do. I also gave myself a day off on my birthday, but was amazed then at how ridiculously sweet the cake tasted. I do not think I will lead a sugar free life, but certainly will aim for 99% no sugar and 90%-95% no processed or overall bad foods / calories.

I think being able to look after my poor ME attacked body in January, letting go of work, sleeping and resting and just getting used to being at home and switching off was a good stage one.

I have loads to write but it is working out where to start. I will give more history on myself in a bit but to let you know how I got here.

I became seriously ill with ME – myalgia encephalomyelitis in 2006. However, I think I have had under-currents of ME for many many years. But 2006 was the year when it revealed itself in all its ugliness, robbing me of my health, much of my life and affecting my family and friends plus of course my work.

Despite a short fight I had to give in and stop work as I became too ill to even walk to my car parked close by to the office in Reading. I had no idea what was happening to me, it was frightening. However, here I am all these years later, definitely older, with more knowledge of ME, more acceptance but at a loss on what to do next.

During my journey with ME I have read and read, tried various approaches in hope of a “cure” but I have come to accept that without knowing what ME really is, it is currently difficult to have a cure. However, in my web of discovery I have read more and more about food, the change in our environment, health, processed foods and all the demons that come with that.

Finally I have decided that the best thing that I can do for myself is to give my body a healthy platform which gives it the best possible chance of improving. The platform to be multi faceted whereby I approach it via food and nutrition, a healthy mind and looking after my physical body to my utmost.

FOOD AND NUTRITION
Firstly with food I am taking the course of an isolation eating regime, healing the gut, reintroduction of food groups and then ending up on Paleo eating regime for 90% of the time. However, I am and will be going into great depth by looking at ME to see what ME needs – as many illnesses do seem to respond to food regimes. Trying to identify my metabolic type and basically anything that affects my food needs as an individual. I do not believe that one size fits all and therefore want to look after my body accordingly.

SUPPLEMENTS
Part of this will be looking at supplements – again that seem pertinent to my body but also to ME.

HEALTHY MIND
This is all a journey of discovery, so at present Mindfulness is part of my healthy mind approach which hopefully in turn will help my body and also my digestion. I am at the start of the healthy mind journey so this will develop although I have been practicing mindfulness for over a year but now with a more serious discipline.

As I learn more about the existence of the mind body connection, it will be interesting to see what this reveals. I also want to ensure my mind remains as healthy as possible, even if not working, even if sleeping a huge amount of time. There are so many elements of living in keeping things like our mind going that we just take for granted so I will check all of this out further.

PHYSICAL BODY
Elements such as sleep, movement (those with ME will appreciate that), the air I breathe, my environment, family, friends, what I do, how I do it. For me at present this is basic items. I am applying for a Blue Badge to help with parking as I can only walk a few steps before the ME yells at me to stop. I have a wheelchair and mobility scooter but cannot lift them out of my current car. So I am looking at another vehicle … but step by step – bit crazy to use that phrase as an ME sufferer.

Again there are so many elements as part of this overall process. But I am hoping that by gently tackling the above elements slowly and surely but at the same time that I will make progress. The isolation eating regime is underway and I will update on that separately.

So at the very least a start and I hope to chart my progress via this blog.