You've guessed it! We're running away this Christmas. Finding some peace and quiet to escape the exhausting round of family get-togethers that can dictate Christmas. We see family throughout the year so there is no need to definitely choose Christmas as the one time we see everyone from all sides of the family within one week!
I have to be selfish and put my needs first. I did it last year and had a wonderful time. We had meals delivered by the supermarket, all ready to go in the oven. More expensive than ready-meals, but cheaper than going out or eating takeaways. And it was lovely. I saw my parents and siblings for a couple of hours, spending much of that time lying on the sofa. I then enjoyed quiet time, with my husband, watching DVDs, sleeping when I needed to and we also continued researching ME and began my routine of meditation and yoga.
I have come a long way in the last 12 months. I can dress myself. I can leave the house without fear of collapse. I can talk to someone on the 'phone for more than 10 minutes. I can be in a room with group of people and work out cognitively what is happening in the conversation! I can knit again. I can eat my husband's chocolate birthday cake next week and enjoy a pudding when we go out for a meal once a month, apple crumble after a main course or a chocolate muffin in a coffee shop-I'm not fussy, but the fact that my body doesn't react with dire consequences is amazing.
So much of this is down to yoga, meditation, the research in ME that helps me understand my different symptoms and how to cope with and stop them. I have also removed myself from positions that didnt help me, from people and places, objects and situations that gave me the worst symptoms. Saying "no" a lot more (and believe me I said it a lot anyway!) but also realising that people respect me for being able to make "no" decisions. I'm doing what is right for me and it is helping me recover.
Happy Christmas Everyone!
Wednesday, 12 December 2012
Tuesday, 6 November 2012
Yuck and Yum!
I've been given Antibiotics for an infection in my skin, glands and ear on the right side of my face. Yuck! Nice and puffy, red and sore, ear keeps popping, Yuck!
I've been "coping" for the last few days (the place is a mess!) and have just sorted hubbie's lunch for tomorrow. I managed to break up two thirds of a cauliflower and two mushrooms and added them to a frying pan which had two chopped up rashers of streaky bacon sizzling in garlic butter (I love that I can buy ready-prepared garlic butter in the supermarket!)
Once browned I added a couple of tablespoons of water and steamed with a lid on for 5 minutes, then it went into the oven, without the lid, for 15 minutes. Yum!
We cooked four jacket potatoes yesterday, so the last of them with cheese and some fruit to finish should suffice.
I really want to try this idea with walnuts instead of the bacon as walnuts are supposedly a great option to eat with cauliflower, but as nuts aren't allowed at OHs place of work, that will have to wait for another day.
Yum!
I've been "coping" for the last few days (the place is a mess!) and have just sorted hubbie's lunch for tomorrow. I managed to break up two thirds of a cauliflower and two mushrooms and added them to a frying pan which had two chopped up rashers of streaky bacon sizzling in garlic butter (I love that I can buy ready-prepared garlic butter in the supermarket!)
Once browned I added a couple of tablespoons of water and steamed with a lid on for 5 minutes, then it went into the oven, without the lid, for 15 minutes. Yum!
We cooked four jacket potatoes yesterday, so the last of them with cheese and some fruit to finish should suffice.
I really want to try this idea with walnuts instead of the bacon as walnuts are supposedly a great option to eat with cauliflower, but as nuts aren't allowed at OHs place of work, that will have to wait for another day.
Yum!
Monday, 5 November 2012
Immune System Science
I'd like to thank a friend for pointing out the author of this book:
Recovering from ME:
A Guide to Self-Empowerment
By William Collinge, Ph.D.
It is available to read on the website www.collinge.org/
I have found some fascinating things to read to help with my ME knowledge and have chosen a piece of it to quote in my post today. Knowing how complex the body is and having such proof that we are dealing with physical anomalies is a very empowering thing. By understanding the foe, the fight is easier to win. Some of the neurobiology is a bit beyond me, but just read through the cracks and you'll get the drift!
"CFS: A DISEASE IN SEARCH OF A CATEGORY
Where does CFS fit in? Interestingly, CFS does not fit neatly into any of the above types of illness. Rather, it has some of the qualities of each. This is one of the reasons why mainstream medicine has had such reluctance to acknowledge the syndrome as a distinct disease--it simply does not fit any of our familiar categories.
We now know that CFS involves both brain dysfunction (encephalopathy, lesions, neurological problems) and immune dysfunction. It is not known whether one precedes the other, or whether they develop simultaneously. According to Byron Hyde, M.D., Chair of the Nightingale Research Foundation, brain dysfunction is a requirement in defining the syndrome. The area of the brain affected varies from one person to the next, although almost all are found to have injury to the left frontal lobe. Damage to this area of the brain is responsible for several of the disturbances of memory, concentration, and other cognitive symptoms of CFS.
The involvement of the central nervous system is further supported by Dr. Paul Cheney, who describes CFS as a disease of cognition dysfunction involving such unusual impairments as difficulties with memory sequencing, spatial disorganisation, trouble giving and following directions, processing problems, intellectual speed, and processing visual and auditory information.
While the involvement of the nervous system is a major part of the syndrome, the heart and soul of making a diagnosis, according to Cheney, remain to be immunologic testing. He describes "all manner of unusual phenomena" going on in the great majority of patients. The most common pattern is chronically heightened T-cell activation, elevated levels of cytokines such as interferon and interleukin II, immunoglobulin deficiencies, and severe natural killer (NK) cell functional deficiency. In fact, NK cell dysfunction is so central to the condition that in Japan the disease is called "Low NK Syndrome."
One leading CFS immunologist, Nancy Klimas, M.D., of the University of Miami, believes this NK deficiency is a central feature of CFS, and qualifies the syndrome as an acquired immune deficiency. She states that her findings, based on a patient population of 500, show higher than normal numbers of natural killer cells in CFS, as if the immune system is trying to respond to something, but very low functionality. The ability of those NK cells to kill was the lowest of any group studied, including among people in early stages of HIV infection, people with ARC (AIDS-Related Complex), and in intravenous drug users.
According to Dr. Klimas, "The most compelling finding was that natural killer cell cytotoxicity in chronic fatigue syndrome was as low as we have seen in any disease... These cells seem to feel the way that CFS patients do--they're exhausted." Other researchers have observed that NK cell numbers rise during the acute stage of CFS, and then return to normal after recovery.
These various dysfunctions help explain how the person may have elevated activity levels of viruses such as Epstein-Barr (EBV), cytomegalovirus (CMV), human herpesvirus number 6 (HH6), herpesvirus types I or II, or other viruses.
These immune dysfunctions are part of a broader picture which also includes immune system up-regulation. It is the chronic, high state of immune activation that appears to be the real cause of most of the symptoms. In fact, Dr. Klimas and her colleagues have also identified a cytokine abnormality that has not been sen before in any disease. In about 35% of their patients, they are seeing interleukin-1 (IL-1) levels that are 50 times higher than normal. Klimas reports that in studies of mice with similarly high levels, the mice develop muscle weakness, lassitude, generalised inflammation, cardiac tachycardia, decreases in cardiac output and peripheral neuropathies--all symptoms found in severe cases of CFS.
Dr. Jay Levy of the University of California, San Francisco, considered by many as the first to have actually located and isolated the AIDS virus, has proposed that the syndrome be renamed "Chronic Immune Activation Syndrome." It is indeed unfortunate that the syndrome was named for merely one of its many symptoms, fatigue, rather than being given a name which represents more accurately the disease process itself. Paul Cheney, M.D. has made the comment that this is like calling pneumonia "chronic cough syndrome."
According to Levy: "We believe that there is an infectious agent that enters the host and activates the immune system... some individuals, because of their genetic makeup or because of their state at the time of infection, will not be able to turn off that activated state... (and) the immune system never returns to a normal resting state. So, these people are in a state of chronic immune activation."...
...One theory is that it is some kind of a hit-and-run virus, leaving the immune system firing away at no specific target."
Recovering from ME:
A Guide to Self-Empowerment
By William Collinge, Ph.D.
It is available to read on the website www.collinge.org/
I have found some fascinating things to read to help with my ME knowledge and have chosen a piece of it to quote in my post today. Knowing how complex the body is and having such proof that we are dealing with physical anomalies is a very empowering thing. By understanding the foe, the fight is easier to win. Some of the neurobiology is a bit beyond me, but just read through the cracks and you'll get the drift!
"CFS: A DISEASE IN SEARCH OF A CATEGORY
Where does CFS fit in? Interestingly, CFS does not fit neatly into any of the above types of illness. Rather, it has some of the qualities of each. This is one of the reasons why mainstream medicine has had such reluctance to acknowledge the syndrome as a distinct disease--it simply does not fit any of our familiar categories.
We now know that CFS involves both brain dysfunction (encephalopathy, lesions, neurological problems) and immune dysfunction. It is not known whether one precedes the other, or whether they develop simultaneously. According to Byron Hyde, M.D., Chair of the Nightingale Research Foundation, brain dysfunction is a requirement in defining the syndrome. The area of the brain affected varies from one person to the next, although almost all are found to have injury to the left frontal lobe. Damage to this area of the brain is responsible for several of the disturbances of memory, concentration, and other cognitive symptoms of CFS.
The involvement of the central nervous system is further supported by Dr. Paul Cheney, who describes CFS as a disease of cognition dysfunction involving such unusual impairments as difficulties with memory sequencing, spatial disorganisation, trouble giving and following directions, processing problems, intellectual speed, and processing visual and auditory information.
While the involvement of the nervous system is a major part of the syndrome, the heart and soul of making a diagnosis, according to Cheney, remain to be immunologic testing. He describes "all manner of unusual phenomena" going on in the great majority of patients. The most common pattern is chronically heightened T-cell activation, elevated levels of cytokines such as interferon and interleukin II, immunoglobulin deficiencies, and severe natural killer (NK) cell functional deficiency. In fact, NK cell dysfunction is so central to the condition that in Japan the disease is called "Low NK Syndrome."
One leading CFS immunologist, Nancy Klimas, M.D., of the University of Miami, believes this NK deficiency is a central feature of CFS, and qualifies the syndrome as an acquired immune deficiency. She states that her findings, based on a patient population of 500, show higher than normal numbers of natural killer cells in CFS, as if the immune system is trying to respond to something, but very low functionality. The ability of those NK cells to kill was the lowest of any group studied, including among people in early stages of HIV infection, people with ARC (AIDS-Related Complex), and in intravenous drug users.
According to Dr. Klimas, "The most compelling finding was that natural killer cell cytotoxicity in chronic fatigue syndrome was as low as we have seen in any disease... These cells seem to feel the way that CFS patients do--they're exhausted." Other researchers have observed that NK cell numbers rise during the acute stage of CFS, and then return to normal after recovery.
These various dysfunctions help explain how the person may have elevated activity levels of viruses such as Epstein-Barr (EBV), cytomegalovirus (CMV), human herpesvirus number 6 (HH6), herpesvirus types I or II, or other viruses.
These immune dysfunctions are part of a broader picture which also includes immune system up-regulation. It is the chronic, high state of immune activation that appears to be the real cause of most of the symptoms. In fact, Dr. Klimas and her colleagues have also identified a cytokine abnormality that has not been sen before in any disease. In about 35% of their patients, they are seeing interleukin-1 (IL-1) levels that are 50 times higher than normal. Klimas reports that in studies of mice with similarly high levels, the mice develop muscle weakness, lassitude, generalised inflammation, cardiac tachycardia, decreases in cardiac output and peripheral neuropathies--all symptoms found in severe cases of CFS.
Dr. Jay Levy of the University of California, San Francisco, considered by many as the first to have actually located and isolated the AIDS virus, has proposed that the syndrome be renamed "Chronic Immune Activation Syndrome." It is indeed unfortunate that the syndrome was named for merely one of its many symptoms, fatigue, rather than being given a name which represents more accurately the disease process itself. Paul Cheney, M.D. has made the comment that this is like calling pneumonia "chronic cough syndrome."
According to Levy: "We believe that there is an infectious agent that enters the host and activates the immune system... some individuals, because of their genetic makeup or because of their state at the time of infection, will not be able to turn off that activated state... (and) the immune system never returns to a normal resting state. So, these people are in a state of chronic immune activation."...
...One theory is that it is some kind of a hit-and-run virus, leaving the immune system firing away at no specific target."
Friday, 2 November 2012
Heavy Cold, Good Sign or Bad?
In case you've been wondering where I've been...I have a heavy cold.
I used to get runny nose, sore throat and it would be mild for a couple of weeks; this was probably the result of an over-active immune system also sending me to sleep 24/7. This is not a mild cold! Hacking cough when I speak or open the front door, nasal symptoms which are a great excuse to use my Kleenex Balsam Menthol tissues, shivers, skin aching...I could go on and on but I'll also mention the right side of my neck has swollen up since last night- it started just behind my right ear and is now in front and down my neck too.
I'm right in line for some great sympathy here aren't I?!
It is probably a good thing, my immune system is working much better, putting all the known (more effective) strategies into place to get rid of this thing as soon as possible. While my husband is a couple of days behind symptom-wise he is currently able to obey some of my requests! He'll be on the sofa or in bed in a couple of days and hopefully I'll be able to answer his beck and call!
This is probably a good sign, my body is fighting a cold properly. If I was fit enough to leave the house and cope with a walk, or a bit more exercise than 20 minutes light yoga in front of the fire, I would probably detox quicker. I'm happy to wait and see what happens, eat nourishing food, drink lots of water and just get on with enjoying some DVD box sets and favourite audio books.
I used to get runny nose, sore throat and it would be mild for a couple of weeks; this was probably the result of an over-active immune system also sending me to sleep 24/7. This is not a mild cold! Hacking cough when I speak or open the front door, nasal symptoms which are a great excuse to use my Kleenex Balsam Menthol tissues, shivers, skin aching...I could go on and on but I'll also mention the right side of my neck has swollen up since last night- it started just behind my right ear and is now in front and down my neck too.
I'm right in line for some great sympathy here aren't I?!
It is probably a good thing, my immune system is working much better, putting all the known (more effective) strategies into place to get rid of this thing as soon as possible. While my husband is a couple of days behind symptom-wise he is currently able to obey some of my requests! He'll be on the sofa or in bed in a couple of days and hopefully I'll be able to answer his beck and call!
This is probably a good sign, my body is fighting a cold properly. If I was fit enough to leave the house and cope with a walk, or a bit more exercise than 20 minutes light yoga in front of the fire, I would probably detox quicker. I'm happy to wait and see what happens, eat nourishing food, drink lots of water and just get on with enjoying some DVD box sets and favourite audio books.
Sunday, 21 October 2012
Up To Date
I've been doing quite well, trying to spend less time in front of the iPad. (hence the fewer posts!) I've started moving my social life slightly away from the online network and am seeing a few friends from Church once a week. Knitting club is becoming easier to manage too. Once a month we meet up and I have managed three out of the last four months. Considering I did one in the previous twelve months, that's pretty good going. A friend is also coming round with her son once a week after school, which is a great way to start seeing people regularly again and keep in touch with those who really matter. It is amazing, and for some people totally incomprehensible that sitting with people, even really close friends, and chatting, even listening to others' noise can be quite exhausting. You'll probably remember the sensation from when you have a headache or the flu coming on, but this can be constant and needs understanding from others, or complete avoidance!
With the colder weather I am indoors more, can't really sit in the garden when it's pouring with rain or blowing a gale! But it is really cosy in our sitting room with the multi-fuel burner roaring away. We have also achieved our promise of buying a new sofa and chairs at the end of this summer. So I can actually sit in front of the fire in comfort. A couple of times every week I am managing a short walk too. Which I am really enjoying. There is a river in our town and I am five minutes from a bench in a very quiet location where I can sit and watch the river wildlife enjoying its day too.
After my seizure a couple of weeks ago I have had a metaphorical slap in the face. Before then, for about 15 years, my seizures were all during the night, or at least when I was asleep in bed (with the ME that was sometimes a daytime option!) So I have got out my silver talisman bracelet, which contains my medication information, next of kin, phone numbers, home address, all written on a slip of paper and folded into it. Paramedics and first aiders are trained to look for it. I have attached it to my keys as I know I won't leave the house without them and am unlikely to wear my talisman bracelet every day around the house (it is rather heavy and uncomfortable)
So as mentioned in the previous post I have reached the 6 month date since starting The Gupta Programme. This is quite a milestone for me as I realise how far I still have to go, but looking back I also realise how much I have recovered since starting. The other tools which are still helping me are reassuring. And I know I have private coaches to guide me if I find any times particularly difficult. These last couple of weeks have been difficult, but I'm managing on my own. I'm staving off a cold and doing very little physically. Knowing that I have to give my body time to fight this virus helps me get through. Pushing through it is likely to push me backwards, as I have mentioned before in my blog, I have to sit down on the rung of the ladder and look at the view for a while, so I don't start falling off it again.
Friday, 19 October 2012
The Gupta Programme
I have been reading a blog by another ME patient (vivaciadreamsofnome) and have written this post in response to her starting the Gupta Programme, just like I did over six months ago. It is a difficult thing to take on a recovery programme of any kind. It takes faith and putting your full trust in someone who you've never met, who you have had to pay and who you have promised to devote your life to for the next six months is quite a scary thing.
Having gone through the turmoil of trying to work out why I got sick and whether these new treatments think I made myself get sick, I want to reassure you with how I worked it out.
Most of us with ME went through some kind of trauma before the illness took hold. Usually it is a physical stress that causes the illness to take hold. In some cases it is three or four emotional stresses coming very close together without nearby support to keep you going. The physical body cant cope. Our doctors batter the body with antibiotics, tests, scans, drips, goodness knows what. It was what the doctors had been taught to do and how they had previously helped people recover. The bodies natural defences start working, just as they have over many generations, throughout history. But we keep trying. Most people can get over meningitis, mumps, a couple of blood infections or glandular fever, but some people can't. Centuries ago that would have been accepted, we would have been "the ill one" in the family, but now we have to keep fighting, we are encouraged to do so from all sides, to keep up with society and the body keeps fighting back.
Because of this our physiology changes and unconsciously learns that even doctors are a threat, antibiotics and the tiniest cold or soar throat can have us in bed for weeks, so fight, flight or freeze, the natural defences are the new learned response to absolutely anything.
Getting too cold when out for a short walk might give me excessive shivers, but then my body would react excessively on top of that, I would be in bed for weeks and have a fever and migraines. That simple example shows that nothing could be done to change the body's new over-reactive defences.
That is what the new understanding of ME has proven. To find recovery these unconscious patterns of physical behaviour are challenged and slowly and surely the patterns change. It is amazing but quite simple too. There are a lot of physiological problems still with the body, toxins have built up with the lack of movement, energy channels are blocked (proven by scans of the neck to cause brain fog) and it takes time, depending on how long you have been ill and depending on how severe the illness has become, to recover to full health. This is where 'pacing' is still important.
Imagine changing the fact that you put on your socks before your shoes and you started wearing you socks over your shoes. It would take a few weeks, possibly months to change the automatic response when you were getting dressed, you would have to consciously decide and sometimes reverse what had automatically happened to make yourself do it. But before long it would be a natural response, quite uncomfortable non-the-less, but you wouldn't have to think twice about it. The same thing is asked with the Gupta Programme, (and many other recovery programmes out there) that we retrain our brains to respond differently to the stimuli that make our bodies react in a way that makes us ill. Depending on how long the illness has been in control and how severe the symptoms have become, it will take different amounts of time and more or less perseverance to find better health. But it is a possibility, recovery is out there to be found.
Be assured you didn't make yourself ill in the first place, you didn't consciously encourage your body to continue being ill and if anything it was the body's natural defences that encouraged the illness to continue. Patients with ME are some of the most determined patients doctors ever come across- who wants to lie in bed without being able to read a book, watch TV or listen to the radio, not be able to enjoy a nice meal or slice of birthday cake? ME patients can stand very little stimulation and are constantly asked to bear some of the most uncomfortable symptoms. And those who seek help and want a way out are the bravest. It takes courage to believe in yourself and take on such a challenge as the Gupta Programme. If you have done this I commend you.
Friday, 12 October 2012
Not much to tell
Yes the days have been uneventful,with little progress or back stepping. So I am happy. Tired and happy. I've not managed much activity, a little bit more socially, which is a great boost to the spirits. I had a seizure last week, probably because of a cold, but who ever knows with such confusions? Since then my body has been telling me to take it easy physically. I've managed a few quiet yoga sessions and to cook a little bit in the kitchen, but very little else. I've spread myself thin on-line(as you might have gathered!) and allowed myself to experiment with visiting some friends, making sure there are limits with how far I go and how long I stay. My confidence in my own spirit seems stronger. I'm sure that my believing recovery is a possibility and knowing I will get there has helped that. I just have to live with whatever bumps on the road happen before I reach that horizon. I'm in a bit of a valley in some areas at the moment, but am right on the top of a hill in others!
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