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.
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/
Our 35th Wedding Anniversary
For our 35th Wedding Anniversary celebrations dear hubby arranged a trip to London to the Aldwych Theatre to see Dirty Dancing Live and reserved a table for a meal at the nearby Cotes french restuarant. As usual he had planned everything in advance to minimise the amount of walking. The nearest tube station was " Covent Garden" and the restuarant was only a few minutes walk from the theatre.
Everything was booked in advance to give me something to look forward to but unfortunately it clashed with my dental appointment to remove my amalgam fillings ( click on the attached link to read in detail)http://www.youranswerswithin.com/2/post/2010/11/safe-removal-of-my-amalgam-fillings-part-two.html.
Although the dental treatment went very well it left me feeling quite tired, not the best condition to be in with a London weekend break arranged, but hey that's life you have to take what's coming your way and try and make the best of it. Travelling down to London was fine and even the tube journey on the Central Line was ok but when we had to change onto the Piccadilly Line for our final short one stop to Covent Garden I could feel the tell tale signs that today was going to be a struggle.
I needed to rest up and quickly, we found a small coffee shop not far from the theatre and sat down for a cup of tea and rest; not the smartest or cleanest place we have been to but beggars can't be too choosey. After dragging the tea drinking ritual out for half an hour we paid up and made our way to the theatre, a little more rested and looking forward to the show.
We found our seats and we had a good view of the stage; it looked like being a Full House. The show itself was highly entertaining and the dancing and singing was superb, but the seats were not the most comfortable and I could feel myself becoming increasingly aware of aches and pains particulary in my groin, neck and shoulders.
During the interval the pain was becoming unbearable, so much so that I had to take a pain killer to get me through the second half of the show. Thankfully the pain relief quickly kicked in sufficiently enough for me to enjoy the finale of the show. It was very uplifting and I think I enjoyed it even more than the movie. There was a standing ovation for the cast at the end of the show for giving us such great entertainment; such energy and all to do again later that evening.
We made our way to the restaurant and our reserved table, glad it was reserved didn't fancy standing outstanding in the cold with the other guests. Nicely decorated and very friendly staff. Hubby had read all the reviews before booking and we were not disappointed with our choice of meals. I had scallops with lardons followed by beef bourguignon and a creme brulee to die for. Pete had mussels in a white wine and cream sauce and, unusually for him, half a chicken with a wild mushroom sauce followed by a french apple tart.
Long before the creme brulee arrived my head began buzzing due to the noise of the restuarant, not the first time this has happened to me and it really is the most unpleasent feeling. It becomes near impossible at times to concentrate on anything I just wanted out of there to get away from the noise, the buzzing and the pains in my chest. Hubby could tell it was happening once again and tried to put a brave face on things by praising me for what I had achieved, coming out and trying to have a normal life; as normal as it can be with CFS/ME.
We left the restaurant as soon as we could and I knew it was going to be a difficult return journey to the hotel. We walked very slowly indeed towards the tube station. My legs, hips, shoulders and neck were all hurting and draging me down, trying to drain my positive attitude, but I wont let it beat me I will overcome it someday and someday soon, I have to belive it!
Hubby told me I fell asleep on the tube, I felt so tired and just wanted to be my old self again just for one day, not too much to ask for is it? It's wonderful to do things together but it's so difficult to make the effort at times and it's only fellow sufferes who know just how bad and difficult it can be; feeling nearly normal one minute and then lifeless the next this is the life that is CFS/ME.
Hi there, we have noticed that a few people have been finding our site by searching for "ME/CFS holidays" and "holidays in devon" so we have made available the folowing link that takes you directly to the cottage that we stayed in.
Hope you enjoy your stay as much as we did.
Just a quick update to let you know how the removal of my Mercury Amalgam fillings is going. After the first course of treatment I have been looking forward to the second course of the treatment , but as the day dawned I have to admit the enthusiasm had somewhat been replaced by a little apprehension.
I had been taking the recommended tablets to assist with detoxification for a week prior to todays treatment, the expected duration of todays procedure was one and a half hours to remove four of the amalgams and replace with a non toxic hard wearing white composite. The first thing to sort out was whether the largest amalgam to be removed required a root feeling or not, this is sorted out by checking if the nerve is dead or alive, I can say catorgorically that the nerve is very much alive (nearly touched the roof when touched with some sort of electrical probe).
Thankfully I didn't require a root filling which pleased both myself and the dentist. So kitted up with all the necessary safety equipment and injections administered the procedure commenced and took a little under the expected one and a half hours.
I found it more tiring on this occasion than on the previous session, but I hadn't been feeling so well recently with disturbed sleep patterns due to increasing pain in my hips, groin and legs - typical symptoms of fibromyalgia.
So I'm half way through my treatment and am very satisfied with the dental work carried out so far. I can't wait for it to be completed so hopefully I can start to feel some benifits. If anyone wants to ask questions please feel free to leave your comments on the "comments page" and I will get back to you as soon as possible.
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 Breathing80 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.htmlCO2 VasodilationCO2 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 EffectYou 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 hyperventilationWhen 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.ConclusionsThe 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
Life is NOT "Supposed to be Fair." Know that there is no single way that life is "supposed" to be. Demanding that life meet our expectations is a sure fire recipe for a miserable existence. Life is a game with no rules. Life just happens to us regardless of our best intentions. Our only path to happiness lies in being open to receiving whatever life throws at us - with Gratitude. Have NO Expectations of life.
- Jonathan Lockwood Huie
First Visit to the Dentist
Well after years of deliberation the day of reckoning had finally arrived, the start of my exstensive treatment to remove my 20 amalgam fillings. The previous day I had paid a visit to my chiropractor in the hope of getting some pain relief from my fibromyalgia which at the current moment is growing in it's intensity and frequency. He worked exstensively on my neck and shoulders but unfortunately this gave me a funny turn which left me fighting to keep myself from passing out; so nothing funny about it really. As a result of this treatment I was not feeling at my best to face the ordeal of the day when I arrived at the dentist for my 4 o'clock appointment.
At 4 o'clock precisely I was called into the surgery for an expected 50 minute session, the dentist spent some time explaining what he hoped to achieve during this session and told me to hold my left hand up if I required him to stop at any time. He then administered the first of the 3 adrenalin free anethestic injections which made me shudder due to the sharp pain, but thankfully this soon passed and I felt nothing with the following 2 injections.
I rejoined my hubby in the waiting room for no more than 10 minutes before being recalled into the surgery to commense the treatment. Well they were certainly taking all possible precautions to protect themselves with numerous layers of facemasks and goggles and high suction equipment. For my own protection I had to take garlic tablets with each meal for a week prior to treatment and charcoal tablets half an hour before and immediately after the treatment.
I was made as comfortable as possible in the chair, a small oxygen mask placed over my nose for the entire procedure so I could breath mercury free air whilst all the drilling took place. Large volumes of cooled water was used to keep the amalgam temperature as low as possible and high suction equipment used to safely remove any debris. Cool damp cloths were placed over my face to prevent absorption through the skin of the mercury vapour and vaseline was applied frequently to my lips for comfort.
All the time the dentists worked speedily and reassurred and encouraged me every step of the way. After the initial pain associated with the first injection I felt no pain whatsoever which was a great relief. The dentist showed me the finished work which I was totally satisfied with and due to the amount of work carried out I didn't get out of the surgery until 5.35pm considerably longer than first anticipated.
Considering what I had just been through I came out feeling not to bad at all, to be greeted by smiling hubby and my parents who were over from Spain for the week. Maybe it was the combination of the oxygen and the relief of not having pain that put me on a small high. I am actually looking forward to my next appointment when I can have more of the amalgams removed which I'm sure have contributed towards my present condition.
We had to vacate the cottage by 10am on Saturday morning, which left us with plenty of time to have a relaxed journey back home staying off at one or two places on route. The first place we visited was the small town of Croyde with it's large sandy beach and sand dunes, very popular with young families and surfers. We spent a good hour here walking down to the sea's edge to have a closer look at the surfers braving the large swell, it was energy sapping for me, especially on the walk back to the car.
We agreed to make our way along the coast to the seaside town of Woolacombe with it's very long beach, and stay for lunch at one of it's many pubs. When the children were younger we spent a weeks holiday in a caravan here with many fond memories. After lunch one more stop at athe small village of Porlock in Somerset for a cream tea with scones and jam (not good for the candida, but can't be good all of the time!) - a fitting end to a lovely week.
The week had been filled with all kinds of emotions: laughter, tears, fatigue, frustration, a sense of achievement and even sadness at times due to the restrictions imposed upon me by this dibilitating illness but with hubby's and my friend's encouragement I managed to achieve far more then I thought possible and am so greatful to them all. At least I'm out there trying and am determined not to be beaten - I will one day be healed!
Friday morning dawned, well mid morning, and I was feeling a little less self pity and determined to have a great time with our friends. They had kindly cooked a full english breakfast for all of us, it was totally yummy and a real treat from what I normally have. Our friends wanted to go down into Clovelly, a trip down memory lane, they had visited it many years earlier when they where a young couple.
They enjoyed the steep walk down through the village and once at the bottom they met up with me and hubby who had cheated once again and called upon the landrover service. I decided on this occasion not to walk on the beach, still fresh in my mind how difficult I had found it. I retired to the quay-side pub for a cup of tea while the others went for a walk along the beach. On their return I found out that the boys had had their photos taken standing inside the waterfall which cascades off the surrounding cliffs and onto the beach - boys will be boys they never really grow up do they?
Hubby decided to walk back up through Clovelly with our friends whilst I took the landrover service back to the carpark. All three red faced and breathing heavily after their steep walk we met on the car park and decided to find a local pub for a light lunch. We found a delightful pub with a picture postcard thatched roof, not far from Clovelly, to enjoy our lunch and a quiet drink.
Later that evening we enjoyed a superb meal of turkey and leek pie with a shortcrust pastry topping, prepared by our friends, followed by treacle steamed pudding and custard - scrumptious. We then retired for the evening in front of a roaring log fire, chatting away until the spoon thief arrived and reminded me it was time for bed.