At many times I wondered whether I had the energy to really organise The Big Sleep but I am so glad that it happened and have been delighted by the support and interest shown.

My motivation has and is two-fold, firstly for children and young people with ME.  Even today I heard about another 18 year old who is local with ME and fibromyalgia and lupus!  Apparently not severe but nevertheless I do keep wondering why so many young people are ill.

Second part of my motivation is awareness as until I was ill over 8 years ago, I did not know have a clue what ME really was – I did not know anybody with it, but I had heard of yuppie flu.  So to get people talking was great.  I put together a newsletter – which you can see below.  I can also send on to anybody who would like it – do email me at sally31@hotmail.com if you would like a copy.

I also came to find several people locally who have ME – 1 of whom I had met but had no idea – nothing like a deceiving invisible illness and the husband of a lady I know locally.  I also came to know of others with grandchildren, children, wives etc. also with ME.  The grandchildren made me particularly sad with the story of how few lessons they can get to at school and after greeting their grandfather how the children soon are laid out ill and exhausted often only 30 minutes after seeing their granddad.  Extremely sad.

The evening of Monday 12th May was the evening it was held.  People gathered at The Cross Keys in Pangbourne, a number dressed up for the Best Pyjama / (decent) Sleepwear competition.  It was a close call by the clap-a-thon between the tramp style string vest with pyjama bottom v the onesy giraffe … possibly with some bias my fiancé Chris won with his tramp style string vest and pyjama bottom.  I can confirm that he did not take the much coveted Lamborghini key ring but reclaimed a raffle prize of an ipod mini speaker which I donated – I did not know he had lost the other one I gave him several years back!

The evening continued with much fun and chatter, scrummy curry and ending up with most appropriately cocoa for some before finishing the event.

My respect for anyone who organises any charity event has increased enormously.  Maybe because of the ME but I had forgotten how much energy it takes plus I cannot multi-task anymore!  Luckily I am relatively organised and utilised Patrick Williams photocopier which I was kindly allowed to use and pulled it together – Catrina doing a large number of leaflet drops for me!!

The Pangbourne shops and businesses were amazing and generous with their raffle prizes including Beauty Box, Green Parlour, Greens, Ninos, Lamborghini, The Rhubarb Tree, Adam and Eve, Forresters, Finn Hair, Ladbrokes, Strutt & Parker, W.H. Smith, Collins, my Mum, Catrina and Lars Jaeger, Jill and Phil Hawkins.  A huge thanks also to all the donations via my JustGiving page – you will see the many donations received on line plus additional money taken on the night.

I found it a wee bit stressful organising but my mobility scooters came up trumps – with the Invest in ME balloons trailing in the wind I went campaigning over a few days to promote.  Most of Pangbourne shops and businesses were most welcoming.  Family and friends gave fantastic and much-needed support, both practically and emotionally.

Finally The Cross Keys hosted the event, made a fab curry, and by this donated £5.00 for every ticket sold.  The pub was a great venue for the event.

All the money went to the charity “Invest in ME”.   “Invest in ME (IiME) which was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on – funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.”  http://www.investinme.org/about.htm

The Newbury Weekly News published an article on page 12 of the Thursday May 15th edition and the Reading Post are publishing next week.  Both newspapers are also hoping to put the article online.

Right time for yet another rest as I am still recovering from the before, during and after.  But that is ok.  I am extremely glad that I organised it and do help it has done just a little in helping others.  Thank you.

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.