Category: 1 - Your Answers Are Within
 
It’s been some time since I last posted, but so many positives have occurred with Julie’s condition that I thought it was time to give an update. Prior to March 2011 things were not great, with Julie’s condition being somewhat on a low plateau unable to do or take part in meaningful things before fatigue set in, you all know what it’s like. 

Then things changed, thanks to a consultant who was helping Julie with meditation classes.  Dr Singh told her about a therapist who was having a great deal of success with ME/CFS sufferers with a technique known as ‘Reverse Therapy’.   After a little research we found that it was a relatively new method of treatment carried out by a Dr. John Eaton.  His methods seemed to offer a solution to this once thought untreatable condition. With a reported success rate of over 80% we thought why not give it a go, we had tried so many other approaches all with only limited success. 

After only the first session the change in Julie was quite remarkable, on our return home we took our dog ‘Buster’ for a walk, usually this consisted of a five minute slow stroll and back home for Julie to rest up.  This walk was very different and on this special occasion we walked at a good pace for over 20 minutes and I could see in Julie’s eyes a long lost glint that had not been there for the two previous years. I knew at that moment things would be different in the future, we were over the worst and Julie had begun her long journey back from the dark side that had consumed both of our lives for so long. 

Over subsequent treatments the improvements gathered in pace, Julie being able to walk further, quicker and starting to take part in social gatherings and activities even including a pop concert, something we could only dream of doing just such a short time before.  She has started to enjoy life once again - what a difference!  Some ten months after treatment started we now regularly walk between 40 minutes to an hour with Buster.  She has even managed to ski non-stop for over an hour (at an indoor ski slope) without side-affects, in preparation for our upcoming skiing break.  I remember in March last year when she had hoped that one day she would be able to do just one run, well she can do a lot more than that and for the first time in over two years we are really looking forward to a holiday that will turn out to be another milestone on her journey to full recovery.  

In the last two weeks Julie feels well enough to attend a children’s centre on a voluntary basis for two hours a day three days a week and is enjoying the experience of working in some capacity. She is realistic and understands that it will still be some time before she is strong enough to hold down such a demanding job, but it’s another step in the right direction - a step we didn’t think she would be taking again. 

Those who have followed past blogs will know we have tried various approaches to try to break free of this terrible condition with only limited success along the way. We are both convinced that the real progress started the day Julie began her “Reverse Therapy” and that it’s this method that has and is helping her to continue her progress towards total recovery. I would add that if you decide to go down this path, I believe, your success will be swifter if you fully open your mind and persevere with the techniques available.  

If you wish to read more about this revolutionary approach to treating ME/CFS then click the attached link   http://www.reverse-therapy.com/ or if you live in the Midlands in the UK try the attached link for Julie’s therapist who we are eternally grateful to for giving both of us our lives back http://www.firstfortherapy.co.uk/  

Lastly I would like to thank Search4ahotel.com for sponsoring the site to enable us to get this message of hope out there to all you fellow sufferers, and carers. Recovery is within your grasp, reach out and take it – we did. 

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On one of my many journeys onto the internet to find answers to Julie's chronic illness of CFS/ ME I came across this website from King's College London. The articles were all written by a Vincent Deary and covered the following subjects in great detail.
History of CFS / ME
What causes fatigue
Understanding fatigue- Towards a model of CFS
Breaking the cycle: An Overview of self help
Physiological Aspects of CFS
Problems with sleep
Problems with mood and motivation
FAQ's about CFS
I make no attempt to interpret his findings on this occasion because I think you need to read it in it's entirety to follow the flow of the articles. Reading each article in turn it became abundantly clear what was and is still happening to Julie and it was so accurate at times it was as if Vincent had read and studied Julie's case history to the point where it was a little eerie but at the same time giving me hope to a way out of the situation we find ourselves in.
It is written in a clear non medical manner that most people reading it will have no difficulties in understanding the key points being made. Over the past two months I have watched helplessly at times as Julie continued her downward spiral towards the depths of CFS/ ME, more fatigued, less sleep, more joint and muscle pain, increasing difficulties in co - ordination the list goes on and on, you are all aware of the sad facts.
We have tried everything we can to halt this downward trend taking a nutritional approach such as supplements waterless cooking and vegetable juicing to try and obtain the optimum nutrition for recovery . Meditation tapes each night, yoga, Mindfulness, Positive thinking, EFT , physcology approach all with the idea of helping the mind to heal itself, but so far it is a very slow process.
What I like about the article is it's in good old fashioned English, easy to read and understand and gives suggestions what to do to cease the decline and to enable you take some control back into your life.
I feel I owe it to my wife of 35 years to help her out of this situation because in some way I feel partly to blame for her condition. Let me explain, for a couple of years before her final crash it had become obvious to friends and family that her teaching career was exacting a heavy price on Julie and I did nothing to slow her down which may have prevented the crash that followed. I was happy with the life we were leading: expensive holidays abroad 2, or even 3, times a year on occasions but at what price? Something I will have to bare, knowing I may have been able to prevent it if I had been stronger with her.
But that is in the past and we have to deal with the now. From what is written it will be a slow process, as you are all aware there are no quick fixes for CFS/ME. Once you have pushed your body over the edge it's a long way back to normality. But I'm sure working together, like we have done all our married lives, we " Shall Overcome " this chronic illness, I will be stronger and I shall not let you down again.
To read the article in full click on the attached link and drop us a line to let us know if you found it helpful http://www.kcl.ac.uk/projects/cfs/patients/
　
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As previously reported on earlier blogs, my gasping for air and chest tightness are just two of my many CFS/ME symptoms and I thought I would try to investigate the cause. The following blog is rather technical in parts and has in my opinion a controversial conclusion, but nevertheless some very interesting points are raised and you may find they answer some of your own questions. At the moment I don't feel I have the energy to fully do this subject justice so I cheekily asked hubby if he would mind completing it on my behalf; bless him he agreed to do so.

Hi its Julie’s hubby here I could never refuse a lady in distress so here goes. I will try to simplify the findings without leaving out what the research is trying to prove.  Although it is quite technical and medical in parts it's worth sticking with it to the end.

What causes chronic fatigue and chest tightness?

Heavy breathing is defined as (breathing more than the international medical norm) it reduces body oxygen content due to 3 independent mechanisms which I shall briefly describe and then later on in more detail where I think it is required.

First CFS patients are chest breathers and chest breathing reduces oxygen of the arterial blood due to insufficient ventilation and oxygenation of the lower parts of the lungs.

Secondly CO2 deficiency, due to breathing too much causes constriction of arteries and arterioles reducing blood supply to tissues since CO2 is a vasodilator.( relaxes the smooth muscles in arteries.)

Thirdly Less oxygen is released by hemoglobin cells in tissues due to the suppressed Bohr Effect.

Before moving on I think a little more explanation and detail are required for these 3 independent mechanisms.

 

Chest Breathing

80 to 90 % of breathing at rest should be done using the diaphragm or stomach.  Chest breathers also known as costal breathing causes a reduction in carbon dioxide (CO2 ) in all tissues including the diaphragm; this creates a state of spasm in the diaphragm.  During costal breathing the lower layers of the lungs receive less fresh air (oxygen) leading to reduced oxygenation of arterial blood in the lungs. During normal breathing using the diaphragm allows inflation of both lungs to fullest capacity which results in higher oxygen concentration for superior arterial blood oxygenation. Costal breathing creates problems with blood oxygenation which in turn leads to reduced cell oxygenation; the driving force of all chronic diseases.

The lymph nodes from the stomach, kidneys, liver, pancreas, spleen, large and small colon and other vital organs are located just under the diaphragm.  So with normal breathing the diaphragm helps to stimulate these lymph nodes and encourages them to remove waste products from the sevital organs.  A major problem of costal breathing is the stagnation in the lymph system and allows accumulation of waste products in vital organs which affect the smooth running of other bodily functions.

This is where detoxification can be of benefit in reducing the amounts of toxins in the body, (see attached link for ideas on detoxification the natural way ) http://www.youranswerswithin.com/2/post/2010/07/mercury-fillings-hidden-cause-of-mecfs.html

CO2 Vasodilation

CO2 is a dilator of blood vessels (arteries and arterioles) they have their own smooth muscles that can constrict or dilate depending on CO2 concentrations.  When we breathe more, (hyperventilate) CO2 levels become less, blood vessels in response constrict and vital organs like the brain and heart get less blood supply.  Similarly hypocapnia (low CO2 concentrations in arterial blood) causes spasms of all other smooth muscles of the body, airways or bronchi, diaphragm etc.

 

Normal breathing allows the normal perfusion and oxygen supply to all the vital organs. Costal breathers suffer from CO2 deficiency effects, the state of these blood vessels define the total resistance to the systemic blood flow in the body.  Hypocapnia increases strain on the heart, under normal conditions CO2 parameters makes this resistance to the blood flow in the cardiovascular system small. So it is concluded that the way we breathe directly participates in the regulation of our heart rate.

CO2 and the Bohr Effect

You will have to bear with me on this one very technical but very interesting if you want to know about energy production in cells and let’s be honest it's one of the main symptoms of CFS/ ME, energy or lack of it.  Oxygen is transported in blood by hemoglobin cells, how do these cells know where to release more oxygen and where less? Why is oxygen released in tissues?

 Hemoglobin cells sense higher concentrations of CO2 in tissues and in response release more oxygen in these areas.  More oxygen is released in those tissues that higher absolute and/or relative CO2 values.  This is true for healthy people who have normal breathing patterns, but for people who are costal breathers and prone to hyperventilating it causes hypocapnia or reduced CO2 in tissues, this leads to hampered oxygen release and reduced tissue tension.

 So in summary if absolute CO2 concentrations are low, oxygen cells are stuck with red blood cells. Therefore CO2 deficiency leads to hypoxia (low oxygenation of body cells ) known as the suppressed Bohr effect and the more we breathe at rest, the less oxygenation of cells in our vital organs like the brain, heart , liver etc., you can start to see in which direction this is heading.

This Bohr Effect is crucial, some organs and tissues work harder and produce more CO2.  These additional concentrations of CO2 are sensed by the hemoglobin cells and this causes them to release more oxygen in those places where it is most required.  Under normal conditions due to the Bohr Effect more oxygen is released in those muscles being exercised which in turn generates more CO2, this allows the muscles to continue to work with the same high rate.  However CFS/ME sufferers have reduced CO2 blood values and are therefore more likely to suffer symptoms of chronic fatigue due to tissue hypoxia (oxygen deficiency)

Expected effects of hyperventilation

When muscle cells and other active tissues do not get enough oxygen supply, more mitochondria switch from aerobic to anaerobic energy production mechanism.   (See attached link on previous article on “functions of mitochondria", which fits into this quite nicely ) http://www.youranswerswithin.com/2/post/2010/07/me-and-cfsits-in-your-mind.html 

 This causes high levels of lactic acid content in tissues and blood resulting in the familiar weakness, fatigue and pain in the muscles and the chest ( heart muscle tissue also gets less oxygen and suffers from hypoxia ) all typical symptoms of CFS/ME, well typical of Julie’s symptoms. Heavy costal breathing also results in lower oxygenation of the blood supply to the brain which makes nerve cells over cited and irritable, headaches and anxiety quickly follows.

Chronic over breathing creates cell hypoxia, high levels of lactic acid, the production of free radicals in cells which can lead to possible inflammation in various parts of the body resulting in digestive problems, liver inflammation and many other effects. Inflammatory processes and mental state of chronic stress   ( fight or flight response - see attached link for previous blog on stress ) exhausts cortisol reserves a steroid hormone produced by the adrenal gland. This explains how Adrenal Fatigue Syndrome and chronic insufficiency in cortisol level reserves develops, something which Julie is taking supplements for after being tested and confirmed as having an underperforming Adrenal glands.

Conclusions

The conclusion is somewhat controversial in that the article says that the cause of CFS is simple, over breathing or hyperventilation, and that when this cause is removed due to normalization of the breathing process all the symptoms of CFS will disappear. Could it really be that simple? I doubt it! The article does contain some very interesting information, however, in particular how hyperventilation impacts on the functions of the mitochondria, the power house of energy production. 

Having watched Julies decline into the depths of CFS/ME over the last 12 months the gasping of air and hyperventilation only became evident to me during the last few months; although Julie believes she has always been a shallow breather.  I don’t believe this was the sole cause of Julies CFS/ME symptoms but it is clearly one of the symptoms of CFS/ME itself.

It may be that the breathing problems are more relevant to other sufferers and closely follows their development of CFS/ME, but I will leave that to others to conclude.  I would be interested in hearing your comments on this subject and if it is relevant to some of you.  Contained within the article are some simple tests you can carry out to see what type of breathing pattern you are, so if you wish to read the article in full or take part in the simple tests click on the attached link here- http://www.normalbreathing.com/d-chronic-fatigue-pain.php

 

 

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Searching for Answers to the Chronic Illness CFS / ME - A Carers Viewpoint

Is it all in your head, Curious ? Read on ……
While Julie spends many hours resting or sleeping, either at weekends or during the evenings in the week, I spend this available time surfing on the Net looking for answers and possible solutions to Julie's dilemma. Since the site's conception it has given me a platform to pass my findings on to other sufferers of CFS / ME and, hopefully via the sites contact page, give others the opportunity to share their views and findings.
On my latest venture on to the Net I came across an excellent article that answers some of the many questions that arose from a recent night out. For those of you not familiar with the night out in question you can read it in full on the attached link http://www.youranswerswithin.com/2/post/2010/07/living-in-the-shadows-of-cfsme-night-out.html
I will briefly lay out some of the findings, which I consider help to explain some of the symptoms Julie experienced on the night out, and later on attach a link so you can read the article in it's entirety if you wish to do so.
This article is based on information published by a Dr. Goldstein from Toronto Canada in his new book entitled " Betrayal By The Brain, The Neurological Basis Of Chronic Fatigue Syndrome, Fibromyalgia Syndrome And Related Neural Network Disorders " ( now that's what I call a book title)
In this book he explains why the symptoms are " Neurosomatic " and not " psychosomatic ", that is to say that CFS / ME is a neurological illness and not an imaginary one. All CFS / ME sufferers already knew this, but unfortunately many Doctors and the layperson do not. It is a neurotransmitter/receptor dysfunction and some of the symptoms of CFS / ME occur because sensory information is not properly managed by the brain.
I have watched on many occasions as Julie becomes overwhelmed by her surroundings for no apparent reason/s. The following information I obtained from Dr. Golsteins article explained to me exactly what has been going on inside Julie's head ( been married for 35 years and that's a first for me) sorry dear couldn't resist that one LOL. I hope that some of these explanations will remove some of the fear factor involved when these episodes occur.
The Technical Stuff
The problem occurs in the Pre Frontal Cortex ( PFC ) of the brain where sensory information from your surroundings is received and processed. This sensory information is received and given a priority relevant to it's importance, this process is known as " Gating ". This gating process is abnormal in CFS / ME sufferers and the information that should be given a low relevance is often given a high relevance ( priority ).
A crucial concept to understand is the " signal " to " noise " ratio. This is where your PFC is supposed to assign a high relevance to the " signal " and a low relevance to any other sensory information " noise ". Let me try to explain , if you're reading this article then the " signal " at that moment is reading, this is what you are concentrating on and everything else is "noise". You may be reading with the TV on, cooking smells from the kitchen, traffic noise outside , air conditioning or fan on etc, you are aware of all this other sensory information but they are all given a low relevance by your PFC so you can concentrate on the " signal " in this example reading.
Now what happens with the CFS / ME brain is that all these other distractions which should be given a low relevance are given a high relevance by your PFC so it becomes increasingly more difficult to concentrate on the " signal " and you become fatigued by this effort of trying to maintain concentration on the " signal ".
This is exactly what happened to Julie on our night out, she became totally overwhelmed by her surroundings with head buzzing, unable to concentrate on the " signal " ( a four way conversation), the background " noise " became too much to cope with and her concentration faltered shortly afterwards followed by fatigue and total disorientation.
Gating information is transmitted to your Thalamus by a neurotransmitter called glutamate. Glutamate levels are abnormal in the CFS / ME brain, Norepinephrine a neurotransmitter that increases " signal " to " noise " ratio is low in the CFS / ME brain, whereas substance " P " a neurotransmitter which lowers " signal " to " noise " ratio is increased in the CFS / ME brain.
messages get confused in the PFC and you receive more " noise " than " signal " resulting in difficulty in concentration and other functions. Let me explain further , the Thalamus receives all this misinformation and has to modulate signals and transmit messages to various other brain centres. The thalamus is vital in normal brain functioning, it modulates signals that control many functions such as pain information, appetite, mood, sleep, autonomic nervous system, libido and the neuroimmunendocrine systems. All of these functions are found to be abnormal in CFS / ME sufferers.
I hope you found this useful in explaining some of the reasons for the symptoms you experience on a regular basis. To try and find out more answers I have just purchased a companion version of Dr. Goldsteins book, this version is supposed to be easier for non- medical people to understand. For those of you who wish to read the article in full click onto the attached link. http://www.ei-resource.org/articles/chronic-fatigue-syndrome-articles/a-book-summary-by-dr-j-a-skerkey-%11-betrayal-by-the-brain/
I thought I would leave you with the following quote which I consider to be a good way of dealing with life as it is with CFS/ME, unfortunately I don't know who the author is.
Yesterday is dead. Tomorrow is a dream. Today - each today - is where the action is - where all of life occurs. Today IS your life - your only life. Live today to the fullest.
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We are looking after my mother and father this weekend due to extensive modernisation work being carried out on their house. The work is getting my mother down because father keeps asking when the work will be completed ( Alzheimer sufferer ) and it's only week one of five, don't know how she will cope with another four weeks of it. I'm trying to plan some way around this problem because I can see what it's doing to both of them, although father says he's not stressed about it, it's certainly stressing mother!
So I thought a break away from it all would help mother recharge her batteries for the inevitable hassles to follow. I moved them to our house for the weekend to keep a watch over them and arranged another trip to the seaside on Sunday before returning them home on Sunday night. The forecast was better than on our last trip, which if you missed you can catch up on the attached link. http://www.youranswerswithin.com/2/post/2010/07/a-day-at-the-sea.html One of fathers favourite haunts is the small seaside resort of Rhyl on the north Welsh Coast where we all enjoyed family holidays many years ago.
To add a little interest for Julie and myself, on the return journey, I planned a detour along the coast before heading inland to the small village of Llanberis which is situated in some of the most beautiful mountain scenery in the Snowdonia National Park and then a visit to " Dolbadarn Castle " which over looks two beautiful mountain lakes.
Sunday morning dawned and up at seven o'clock to administer the first round of Julies medication, (normally get up at six o'clock but feeling all washed out due to the stress of dealing with my parents and a health concern with our youngest son). Some new supplements to issue , "Vitamin C powder " to add to immunopro Rx some 15 minutes after the first round, breakfast to follow 20 to 30 mins after this and a further 8 supplements; military precision required here and all before Julie gets out of bed.
Right that's Julie dealt with, now to turn my attention to preparing the picnic whilst at the same time preparing breakfast for mother and father. Carve the chicken, which I cooked the evening before to save a little time, cut and butter the bread rolls, wash the tomatoes, spring onions and celery, drinks and all done by 8.30am just have to wait for Julie now; the unknown factor when planning a day out. But by 10 am everything is packed into the car: Julie, Mom, Dad and the picnic don't think I've forgotten anything, set the Sat Nav and on our way E.T.A. 12.30pm.
I decided to opt for the scenic route, 25 minutes longer but time was not an issue, this was a mistake far too many twists and turns which unfortunately made Julie feel sick on more then one occasion. At least the weather was good and getting better as we progressed. We were on schedule when, yes it just had to happen, traffic came to a sudden standstill. Looked like a major accident, not to worry I thought, my trusty Sat Nav will sort it out.
The directions just didn't feel right but I obediently followed my instructions to the full. However, the Sat Nav had directed me on top of the A5 with a long traffic jam beneath. Turn around as soon as I can was my next thought when all of a sudden a 4 wheel drive vehicle was blocking my way. My first thought was he's followed me and is also lost. He made no attempt to move and then wound his window down. "Can I help you", he beamed, "this is private property". I apologised and explained about the accident. He smiled briefly, as if satisfied with my answer, and reluctantly removed his vehicle and allowed me through.
We were once again on our way. We arrived some 35 minutes later then planned due to the diversion and quickly found suitable parking near the seafront. On our previous day out I made the mistake of taking the picnic to the beach which my father thought was " not a good idea " check out the above link. So I decided today I would serve up refreshments in the car. This was a much better idea and avoided the previous problems encountered - felt a little like an air steward serving on a aeroplane, " more drinks anyone ". All fed and watered we ventured out of the car to explore a very sunny Rhyl.
I knew from previous experiences that we wouldn't be going far with Julie's condition and this proved to be correct, some five or six minutes later "I need to sit down" Julie said, " I can't go any further ". Well that was better than I thought we would achieve so I was pleased. "Leave me here and you go for a walk with mom and dad " Julie insisted "I'll sit here on this bench and enjoy the sun".
So we left Julie on the bench resting and we walked to the beach, " will Julie be alright by herself " father asked I replied, "well she's not going to go far is she? ". We were away for about 20 minutes and returned to find Julie had moved a short distance to get into the shade. I have noticed with Julie recently that she has problems regulating her body temperature and can quickly become very hot or very cold in a short period of time, another symptom of CFS / ME I suppose.
We had a very slow walk back towards the car and set the Sat Nav for Llanberis and off along the coast road passing row upon row of caravans set out in a regimented formation to our right with some beautiful views of the mountains in the distance to our left. We made our way to our destination. Llanberis is situated on the lower slopes of Snowdon, the highest peak in England and Wales.
We arrived on the car park opposite Dolbadarn Castle, situated on a rocky hillock some 80 feet above Llyn Padarn and Llyn Peris two lovely mountain lakes. The castle dates back to the 13 century and was constructed by "Llewellyn the Great " to protect the route from the lowlands.
I so wanted to Julie to get to the castle to take in the outstanding views looking over the lake and over towards the Snowdon massif in the near distance. I knew it was going to be difficult but I was determined to get Julie there to enjoy the views. You may think I was being selfish in trying to push her to the limits to get her there but you have to battle to beat this chronic illness and this was just another battle to be fought and won.
It is only a very short walk from the car park , over the road, cross over a small bridge with a beautiful mountain stream of crystal clear waters, and gradually uphill towards the castle. Mother and father both in their 80's managed it without too much difficulty but it was a very different story for Julie.
Very slowly arms interlocked, step by step we made our way upwards, finding it more and more difficult with every step as if burdened with a great weight on her shoulders we crept upwards towards our goal. It took a full 20 minutes to reach the sunshine shining through the trees which was protecting the castle from our view, under normal circumstances you could do it in no more than 5 minutes but this was not normal circumstances.
I knew it was going to be difficult, but what do you do, give in to CFS/ME and let it rule and ruin your life or make a monumental effort to try and defeat it. Thankfully Julie's character is strong by nature and it needs to be to help fight and conquer this chronic illness and I'm sure it will be tested to the full in the future. Julie rested on the remains of the walls at the foot of the castle and took in what can only be described as breathtaking views of the surrounding lakes and the Snowdon Massif while I took many photographs and mother and father explored their surroundings.
Some 20 minutes later and suitably rested it was time to return to the car, Mother and father led the way down and during the short decent Julie had to stop to rest. The mind was willing but her body was playing cruel tricks on her, legs like lead she could go no further, we stopped on a few steps and Julie wept on my shoulder, her body unable to respond to her commands. At this point I was feeling dispirited blaming myself for pushing her too hard and bringing this upon her but with true grit and determination she pushed forward and we made our way back down to the car park.
It may have been only 80 feet high but Julie had to summon great courage and determination to conquer this personnel challenge. She showed more character in meeting this challenge than when we had previously reached the 3,500 foot summit of the nearby Snowdon. My hero , my inspiration, my Julie.
I hope other CFS/ ME sufferers can also draw some inspiration from this article and gently push their own limits, you haven't got to stop living and accept things as they are, there are still things to do and achieve no matter how small or how difficult. Never forget that feeling of achievement when you conquer your own goals, step by step it will help you on your own long journeys to recovery.
I thought I would leave you with a couple of my favourite quotes.


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The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.

Horace Bushnell

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It has been my philosophy of life that difficulties vanish when faced boldly.

Isaac Asimov



For all who read my blog, It would be amazing if you could forward my link  http://dld.bz/mBZq  to as many people as you know (twitter/facebook/your email list etc). You will then be doing your own bit for ME/CFS awareness and spreading the word to people who one day might just need it! x


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Fighting the Chronic Illness of CFS / ME with Vegetable Juicing

It's Julies chief carer here , her hubby Pete, having read her latest contribution to the site regarding " Candida " I have realised I haven't been doing my job very effectively with relation to my juicing duties. I hadn't realised that all my juicing had been overloaded with fructose which for those of you who have read the latest blog will now know feeds the candida yeast infection.
So I thought I would educate myself in the correct protocol for juicing and pass on this information so other carers don't make the same mistake that I made. To build up and repair the damaged and weakened immune system we must get the maximum amount of minerals and vitamins into the body to speed this process up.
One way to achieve this is through correct cooking procedures which minimises nutrientloss , see " Waterless Cooking " click on the attached link http://www.youranswerswithin.com/2/post/2010/07/waterless-cooking-ill-try-anything.html the other way is through juicing, not the way I was previously doing juicing with lots of fresh fruit and very little else other than carrots, but " Vegetable Juicing " let me explain....
Vegetables are highly beneficial for our health and important in the prevention of disease. Juices extracted from raw vegetables are more beneficial because they provide all the tissues and cells of the body with the necessary elements and nutritional enzymes which they require. Juicing works to " pre-digest " the vegetables meaning you get the optimum benefit of quicker absorption of the nutrients and enzymes, ( tip-when drinking swill around the mouth to mix your saliva with the juice, this further speeds absorption.)
Raw vegetables contain enzymes that are easily destroyed by heating. They are made up of delicate micro-nutrients that are altered to their detriment by high heat cooking and many of the benefits are lost. For this reason jarred vegetables and juices pasteurized to improve shelf life are far inferior to freshly juiced vegetables.
The optimum way to juice vegetables
To get the maximum amount of nutrients out of your vegetable juice it's best to juice immediately before you intend to consume it. In reality if a carer is doing the juicing it may be a while before the sufferer is out of bed to drink it, so if you have to prepare and store it keep it in an airtight glass jar out of direct sunlight in order to minimise oxidation of the precious minerals, vitamins and enzymes.
If stored in the refrigerator it's important to leave it out at room temperature for approx 30 minutes before consuming which is optimal for the digestive systems. Consume at least 20 minutes before a meal or 2 hours after a meal to allow easier digestion.
Intense dark green leafy vegetables such as spinach, cabbage, broccoli, kale, green leaf lettuce, red leaf luttuce should form the bulk of your juice with an occassional carrot thrown in the mix to add a little sweetness. ( tip-if you haven't been diagnosed with having Candida you could add extra carrots ) Some of these juices are very good at detoxification and should therefore only be consumed in small amounts until your system becomes accustomed to them, this should avoid some of the light headiness and lethargy associated with detoxification. Julie can confirm the potency ofthe juice, the first one I made nearly blew her head off lol. Seriously though it did make her very dizzy for a time, but don't let this put you off trying it because the long term benefits should be far greater than the short term symptoms you may or may not experience.
I have included a short list of recommended vegetables best suited for juicing but there are many more to try it's all down to personnel choice. Due to the potency of some of the juices it's best to mix a variety of the following together.
Beetroot Juice
Is very strong and should only be used in small quantities, and is usually mixed with other juices such as celery, cucumber,apple and carrot. It is excellent for purifying the blood and is effective in aiding kidney and liver functions. Good for digestive disorders such as constipation.
Broccoli Juice
Broccoli is well known for it's reputation for fighting cancer as it contains large amounts of anti- oxidants and fibre. Choose only the darkest green,firm to the touch broccoli, don't use if showing signs of yellowing or going soft. The stalk can also be used as it contains plenty of vitamins and minerals.
Fennel Juice
Best known as a digestive aid it is also a diuretic and is effective when dealing with bladder and kidney problems. Best of all for CFS /ME sufferers it is a general pick -me-up and combats general tiredness and fatigue. Choose firm bright coloured bulbs and wash thoroughly before use. Fennel mixes well with apples, carrots,pear and celery juice ( tip- remember the fructose and candida so use the fruits sparingly )
Lettuce Juice
It contains a chemical similar to, wait for this, " opium " which acts as a powerful relaxtant to the nervous system. It is known to help with stress, anxiety and insomnia. The darker the lettuce the more nutritional value they have. I shall never look at the humble lettuce in the same light again.
Spinnach Juice
High in iron, more than any other vegetable, good for anaemia, depression,fatigue and one for the ladies PMT. Helps the digestion system and a good internal cleanser. Spinach juice is very strong and like Beetroot juice should be consummed in moderation.
Cabbage Juice
Excellent cleanser of the internal system and is also highly antiseptic, good for constipation and helps to reduce high blood pressure. Cabbage juice should be mixed with other juices such as spinach, lettuce, cucumber, celery and carrot to help reduce it's potency.
Carrot Juice
Excellent tonic for most ailments including the immune system, use sparingly if diagnosed with Candida due to it's natural sugar content. Use only firm organic carrots if possible, if not peel before juicing.
Celery Juice
Well known for it's abilities in easing rheumatic and arthritic pain and inflamation, also good for taking to aid recovery from colds and flu. The potassium in celery helps lower high blood pressure and is effective in strengthing the stomach, kidneys and liver. For CFS/ME sufferers it also aids sleeping problems. Choose only firm stalks that show no signs of wilting, remove both ends and wash before use.
Cucumber Juice
Helps control fluid retention and assists with bladder problems, it also cleanses the blood. Only use dark green cucumbers firm to the touch with no signs of wilting, use organic if possible or wash thoroughly or remove skin because they are often covered in a wax like film.
Until I researched the subject I have to admit that I didn't realise there were so many benefits to taking vegetable juice, but to get the maximum amount of benefit out of the vegetables you need a juicer up to the job in hand. The one we purchased and performing much better than our previous cheap juicer can be found here on the attached link http://www.oscarvitalmaxjuicer.co.uk/
So there you have it all the information you need to help you on your road to recovery so go on " Get Juicing "
( Last Tip - the juicing process extracts most of the fibre from the vegetables so you still need to eat and cook as per normal to get the fibre back into your system )

For all who read my blog, It would be amazing if you could forward my link  http://dld.bz/mBZq  to as many people as you know (twitter/facebook/your email list etc). You will then be doing your own bit for ME/CFS awareness and spreading the word to people who one day might just need it! x

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A day at the sea 07/31/2010
 
Well I was off work for a week and didn’t want to stop at home everyday so what could I do? With Julie's CFS / ME symptons in my thoughts I had to think of something we could do together without expending too much energy. I decided a day trip to the seaside would be just the tonic she needed. Nice steady drive, that shouldn’t be tiring I thought, short walk to the beach and a little picnic, so nothing there to tire her out. Feeling confident and to make things a little more complicated for myself I also decided to take my 85 year old father who suffers from alzheimers and my 82 year old mother.

So plans were set and a suitable days weather had been forecast so Wednesday was the day. On the morning of the trip I got up as usual at 6.00.a.m., distributed the necessary medication and prepared breakfast for Julie. So on with the preparations, sandwiches for four made, gluten free bread for Julie of course, eggs boiled, tomatoes, spring onions ( a favourite of mine ) and celery all washed to get rid of any pesticides, flask filled with filtered water and a flask of Rooibos Tea ( caffeine free and low in tannins) all prepared. Chilled beers and soft drinks taken from the fridge and all packed into two large cool bags.

Julie eventually got ready and off to my parents we went, all going to plan except the weather was very dull, but at least it was dry. Onto the M6 motorway then the M54 past Telford making good time even the weather was brightening up, things looking good. " How long you say you’ve got off work?" asked my father, the first of many similar questions I would get used to on our day out together, " just the one week " I patiently replied.
Into Wales we travelled , clouding up and starting to rain " have you got your suntan cream on mother? " I joked , " no" she replied "just my nivea cream", never used anything else and swears by it .

For those of you not familiar with our destination, Barmouth is on the Welsh coast within the Snowdonia National Park, a beautiful part of the world surrounded by some memorable high mountain peaks. One of the mountains, Cadair Idris is one of our favourites and in better times scaled on a nunber of occasions by Julie and myself. We have seen some breath taking views off the summit of Cadair Idris of Barmouth in the distance.

Now the things about mountains they love to attract the cloud and the rain and today was no exception. Oh dear I’m thinking total wash out, but as we descended from the peaks near Dinas Mawddwy the cloud started to break and the rain stopped, maybe not going to be a total wash out after all.
We arrived at the car park just before 1.00.p.m. and the decision had to be made do we eat in the car waiting for it to brighten further or should we risk it and head for the beach? Well I like taking the odd risk so " come on lets eat on the beach" I suggested. " Not a good idea" my father muttered, so the decision had been taken, the beach it was.

I was keen to get on the beach, with folded chairs under my arms mom and dad carrying the cool bags and poor Julie at this point, having spent two and a half hours in the car, was struggling to carry herself to the beach. She always feels better if she lies flat this is another symptom of CFS / ME. Did you know that blood circulates more slowly with people suffering from CFS / ME when standing or sitting upright only 5 litres per minute compared to 7 litres per minute for non sufferers. It all makes sense, less blood flow means less oxygen which means less energy.

I located a spot in front of some large sand dunes which I believed would afford us some shelter and set the chairs and blanket out. " Not a good idea" father muttered once again, I was also beginning to think this was not a good idea when the wind picked up and blasted us with sand. "We'll get sand in the sandwiches and beer " father muttered, " Come on sit down and enjoy the fresh air" I replied. " I should have brought my sheepskin jacket" was his next little contribution whilst at the sametime pulling a face.
　
You had to be there but it was one of those moments that just made you laugh, I don’t think I've seen my mother laugh so much in a couple of years. Julie was laughing away on the blanket and even my father could see the funny side of things and began joining in the laughter, precious just a precious moment to see all around laughing away.

I took Julie arm in arm very slowly down to the waters edge and watched a few bravehearts playing in the surf. I could still here my mother laughing in the distance, the wind can do that carry sound very effectively. We had a moment or two together chuckling to each other about what had just gone on and made our way back to camp to tuck into the prepared picnic.
We consumed the picnic quickly, to be honest it wasn’t the best of conditions the wind was howling, mother was dithering although I gave her my jacket for extra protection and father, well he was talking about icicles and all things cold.

We packed up and had a very slow walk back towards the car park. Julie was really struggling, shuffling her feet forward in an awkward motion similar to a geisha girl and a far cry from the woman who only a short while ago accompanied me to the tops of the highest mountains in England and Wales, that’s what CFS /ME does to you it takes every drop of energy and then some more.

We dropped the chairs and bags in the car and headed for a nearby café to have a drink and let Julie recover a little. There we decided to drive a little up the coast to a nearby seaside resort of Porthmadog. On route we passed the impressive Harlech Castle on our right, some glorious long sandy beaches to the left and impressive mountains in the distance. Did you know that going out into the countryside helps to boost endorphins in the brain which makes you feel better so it’s well worth the effort.

We arrived at Porthmadog and parked up by the harbour with some really awesome distant views of the surrounding peaks. We only walked a matter of a few yards when Julie said she just couldn’t go on any further and needed to rest so we ended up in another small café and ordered teas before making our journey home.

Some 30 minutes later we were back in the car and the Sat Nav set for home. Now the thing I like about Sat Navs is they take you places you would seldom pick out yourself. It directed us onwards and upwards through the mountains and we were all impressed with the beautiful scenes we were greeted with at each turn in the road. The endorphins were in overload and Julie was really enjoying what she saw. After we came down from the high mountain scenery Julie decided to put some meditation tapes on her ipod and sank into the chair to relax.

Some two hours later and nearing home she awoke and asked what we were doing about tea. I asked in the back of the car if mom and dad fancied going for a meal, " yes" they both replied so a pub hunt had begun. We settled on a pub on the outskirts of Wolverhampton and found ourselves a suitable table. Looking at the menu I asked what everybody wanted, father bless him said" I’m not hungry I don’t want anything " I reminded him that not more than 5 minutes earlier he said he wanted something" no I didn’t " he replied. Well no point getting stressed about it I thought and eventually we all settled for something small off the menu. Fish and chips twice for mom and dad, gammon and eggs for me and a vegetable moussaka for Julie. Well would you believe it the fish were huge with plenty of fries, I thought he won't finish that being he’s not hungry, but without a grumble the fish and chips were duely despatched.

Meal over and only a short journey back to my parent's house. We dropped mom and dad off who thanked us for a wonderful day out. I presumed father had by this time forgotten about being sand blasted on the beach, so not a bad idea after all lol.


We arrived home a little before 9.00 p.m. so quite a long day for Julie who had struggled a lot with her energy levels, but had some great views and a lot of laughter to remind her of our day out. So my caring for the day was over or so I thought, a little while later in bed Julie began to cry she was so upset and fed up with the way things had turned out because she couldn’t do more due to lack of energy. She then got quite emotional saying "is it ever going to end, I’m making your life a misery". I gave her many words of encouragement and assured her she wasn’t making my life a misery and to concentrate on all the good things we had seen and enjoyed together earlier that day.

She told me that when she gets these emotional feelings there’s nothing she can do to control it and it has to run it’s course. It makes her feel low and lifeless it’s like a hormonal reaction she has no control over.

So after further encouragement and comforting she regained her self composure and confessed, despite how she had felt at times during the day it proved to be a worthwhile experience and she would gladly put herself through it again in the future for the brief moments of feeling like living a normal life.

From my point of view as a carer it’s not easy to plan outings because of the physical restraints but it's worth every effort to share those rare moments of happiness we shared together on the beach with my mother and father. I have said previously we owe it to our partners to make life as normal as possible and with careful planning and thought I will continue to do so.
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I suppose I'm lucky in a way if you can consider caring for someone with CFS / ME to be lucky. Julie's job as a primary school teacher meant frequently not coming home before 6.00 p.m. then working late into the evening on preparation work for the following day. So coming home first and putting the tea on became the norm; house rules first home starts the tea. I'm sure sometimes she would park down the road and wait for me to arrive first- only joking dear. So I got into the ritual of preparing tea.
At the same time my father was diagnosed with Alzheimers and I got involved, along with my brothers, with helping mother - my caring days had begun.
When this terrible condition raised its head back in September 2009 I was already in a routine of coping with very stressful situations with my father so I just got on with it taking most things in my stride with Julie by my side.
How do you cope with such a condition as CFS / ME? Well the first thing was to find out what I was dealing with. I spent many of those early evenings alone researching on the internet looking for answers while all the time Julie slept away upstairs.
This is why the blog came about to try to communicate with other CFS / ME sufferers what we had found out and to try to put it all together on one site so people could easily read it. In those early days we both felt vulnerable and alone and not sure what to do next so the future developement of a blog when time permitted seemed the logical conclusion.


What did I do next

Research indicated Yoga for CFS / ME symptoms was an effective way of doing gentle excercise so I purchased a Yoga DVD specifically for CFS / ME sufferers, this became part of at times a daily routine when the symptons released their grip.
It quickly became apparent to me that we also needed to look deeper into ways of helping. Chemicals in tap water, toxins in plastic bottles of mineral water ( BPA ) banned in some countries but still used in the U.K. This all added additional pressure onto an overworked underperforming system. So the simple answer, filtered water in the house on tap 24 hours a day. After the initial outlay it works out cheaper and healthier than bottled water ( see Helpful links page ). Juicing for vital vitamins and minerals used up quickly in todays busy stressful lifestyle are essential but lacking in the highly processed supermarket brands with their " E " numbers and artificial sweetners. Juice your own, from organic vegetables if possible, and fresh fruit (don't forget to wash them first ) this will give you vital minerals and vitamins to start your day. You will need to purchase a juicing machine up to the daily rigours and the one we recommend can be found on , you guessed it the aptly named  " Helpful links" page .


Back in December my research discovered a clinic in London who took a holistic approach to helping CFS / ME sufferers, they covered such varied topics as meditation, nutrition, EFT and more, all aimed at helping the mind and body to recover. So we set off to London at the end of January for 3 Full days of training in the use of these techniques . This is still very much a work in progress.
The nutritionist sorted out a supplement regime specificically for Julie to follow. This involved many costly supplements, 12 in total, to deal with various areas such as Pancreas tablets to help absorption of all nutrients, B12 lipoceutical spray as an anti-oxidant and to give energy, zen tablets for stress relief and to calm the nervous system and improve detoxification and so on and so on you get the picture.

So my daily routine consists of getting up at 6.00 a.m. 4 supplements for Julie, shower get dressed mix a glass of high protein whey powder " Immunopro RX " not cheap but the best out there ( useful links page). Downstairs have breakfast make some fresh juice for the day switch the P.C. on, change the daily uplifting desktop image with positive quotes. Search through my collection of suitable positive thinking videos (a selection under inspirational videos on front page) and chose a suitable one so when Julie gets out of bed she can start her day surrounded by positive images and thoughts. Did you know research shows that a relaxed positive attitude helps boost the functions of the immune system. Before going to work back upstairs and 6 more supplements before breakfast. I dont like this part of the morning ritual because I have to wake Julie up from a deep sleep but it has to be done for the greater good.
A few texts during the day just to check how she's doing and to encourage
her if she appears low. Back home from work and.... and well I never really know until I walk through the door what I'm going to find, is she up? is she sleeping? is she feeling ok? you all know how it is. If need be I get on and prepare tea and the whole cycle goes on and on. I can but dream that one day the cycle will be broken and we can both get back to some resemblance of normal life.
We try to keep things as normal as we can, we can't go ski-ing or mountain hiking at the moment but it doesn't stop us socialising with family and friends. We still invite friends around for dinner (no guesses for who does the preparation,cooking etc.) and try and have a good time. I certainly do, I enjoy the cooking and having a little to drink. If Julie needs to lie down on the floor to rest or even go to bed we all accept it, that's the way it is, no self pity it's a total waste of time and precious energy.

The site has certainly focused my efforts on researching the latest information that's out there and I hope to bring it to you when I find it. I have changed a lot since Julie was diagnosed with CFS / ME, in a strange way I have become more positive about things even with the frequent crashes but I'm convinced she will get better. I need to think that she will get better and Julie needs the hope of believing she will get better.
Whatever we do together no matter how small we try to live for the moment. We live for the now, no regrets, what we did in the past is just that "in the past" live for today that's all any of us have for sure. So it's all things positive no room for negativity this only drains vital energy and doesn't make you feel any better does it ?
I will from time to time add a blog to the site when I feel I have something worthwhile to contribute, but please remember what I have said previously it's not only about Julie it's about all you sufferers and carers. You all have a story to tell, let us share your stories with others so hopefully we can answer some of their fears. The fact that you are reading this means you are searching for answers too, so come on share your fears and thoughts it might just help to get it off your mind.
That's it from me, no poetry I leave that for the more talented members of the family but I will leave you with one of my favouite quotes....

Though no one can go

back and make a brand

new start, anyone can

start from now and make

a brand new ending.

Carl Bard
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Julies Crash 07/20/2010
 

Hi there, this is julies husband again (pete).
Last night was one of those unpleasant occasions as a carer when you can't do anything to help, a total crash for over doing things; not physical but mental exercise. She's been working on things for the site to get the message out there and to share her experiences in order to help others; thats what she's like and I'm sure one of the contributing factors towards her illness.
In the middle of tea last night she just could not go on, no energy at all not even sufficient to pick up a fork, mind totally buzzing, severe headache, unable to move unable to think. I had to assist Julie to bed where she lay down for 20 minutes motionless, unable to summon sufficient energy to move. What could I do to help? -stroke her hair whisper kind words of encouragement but in reality I could do nothing, absolutly nothing. Most of these incidents occur when I'm at work and must be very frightening to be all alone and helpless.
Time had to take it's course until she had regained enough composure to use EFT, that she had blogged about earlier that day. This helped her to calm down her system and become less anxious about her syptoms, but she was still not with it for the entire evening. I even went to the shops to get her a couple of bars of chocolate even though she should't have any due to the sugar content but it was something I could do to help. It did raise a glimmer of a smile! The only thing certain about CFS/ME is that another day soon comes around and hopefully things " Can only get better "
So I thought I would share this experience with you all today and take the opportunity to ask any CFS/ME sufferers and carers out there to drop the site a message of support for all the hard work she is trying to do to help others.
Why not go to the contacts page and share your experiences with us so we can put them on the site for all to see. If you're on the road to recovery, recovered or just been diagnosed, let us know how you are doing. The more people who come to the site and tell their stories, good or bad, share their experiences, tell us what works for them, what makes things worse it all helps others to know they are not facing this alone. Get if off your chests, let it out, I'm sure it will help you and others to ease the pain and suffering. Visit the poetry section you may find it easier to put your feelings down in poetry there's some moving poetry already on there.
Julie's feeling a little better today thankfully, and hopefully she will continue to do her blogs in the coming days. Remember this Blog is for all you CFS/ME sufferers give us your comments and let us know what you think of the content. Are there any topics you would like to bring to the table or get out into the open?
Hope to hear from you soon, don't be shy remember we are all in it together sufferers and carers. We have to accept the ups and downs of the sydrome and stay as positive as possible to help our partners or children. The more normal we can make life the happier they will be and hopefully they will stop worrying about us and spend all there limited energy on getting better.

For all who read my blog, It would be amazing if you could forward my link  http://dld.bz/mBZq  to as many people as you know (twitter/facebook/your email list etc). You will then be doing your own bit for ME/CFS awareness and spreading the word to people who one day might just need it! x
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