Selfish Escapism

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!

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!

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."

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.

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.

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.

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!

A poem

A hundred daffodils lift their faces to the sun, never noticing their own golden light. 

~Danna Faulds

Detox Doctor Who Style!

Yesterday morning was my third Thai massage appointment. The practitioner also does Indian head massage and reflexology, along with her experience as a yoga teacher. She was drawn to my feet yesterday and found a lot of stress in my lymph nodes and stomach (no surprises there!)
The strange thing I noticed afterwards, about 12.30pm, that I had spots appearing on my chin. They are still present, I can feel them, thankfully they are not particularly visible! sounds like something detestable from a sci-fi movie or Doctor Who! This morning I have also woken up with a runny nose. So the detox has started again. Two weeks ago after my last massage I had spots too, a sore throat for a few days and really achy legs. We discussed this during the session, how we had to slowly push the edge, but not do it so quickly that I collapsed in a heap. My body needs to expel the years of toxins that have built up and I am willing to wait for that to happen slowly. This isn't unusual in ME patients as they find recovery. It has been a regular topic of both the forums I use which are attached to the specialists I use; Ashok Gupta (link) and Secrets to Recovery (link)
Everyone sees it happen at different times and stages of recovery and also at different paces. I'm currently happy with the pace I'm finding, any faster and I'd struggle to continue with my daily routine.
As I write about toxins, thought I'd let you know that I'm having my annual flu jab this week. Thankfully I thought to ring the doctor's surgery before the clinics were announced to the town so my husband (the carer) and I both have appointments at a convenient time! The last time I had a serious flu, 1999, it lasted four or five days and I was struck down with multiple seizures because of the high temperature. It then took me about 3 months to get back on my feet and back to the energy levels I had before the virus hit. I haven't gone a year now without having the annual vaccine and it has lifted a big weight from my shoulders. Definitely recommended.

Monthly Achievements September

Yes as the months pass by, the title of this gets longer!
So what have I achieved? Every week, at least once I am able to go for a walk. I love this, it is one of my dreams you may remember. Yesterday I put on my coat and went round the block, having a sit down with some ducks by the river half-way round and came home very pleased with myself. Possibly this was managed because I did no yoga and virtually now walking or standing around the house yesterday, but hey ho! It was certainly a very pleasant way to use my legs. I particularly loved the fact that it was really quiet. We had just had a torrential rain shower and everyone else appeared to be hiding! I usually go for a shorter walk and hadn't managed a full circuit for a couple of weeks, so this was extra special.

The idea of cooking with food from scratch has gone well. I'm using my imagination and cooking things really quickly. Tomorrow is pork escalopes, which might be under the grill, or with some apple in the oven. Every weekend I also get the mixer into action and make a cake to reawaken my love of baking. OH loves that too!

Creativity. I am amazed that ive actually spent probably four hours over about four days, sitting at the table, making Christmas cards. I've organised them with envelopes and plastic bags all ready for sale, possibly at the library and already on Folksy! Also started a bit of sewing again. I'm making the tiniest rabbit you can imagine sewing. The instructions say nothing about sizing up the pattern but suggest this is all manageable on a sewing machine. I am changing the way the ears fit on and really struggled with the legs. So am convinced this is not the case, so my husband is probably enlarging the pattern as I type (during his lunch break on the office photocopier(shhhh!))

Crafting

I've been crafting. Everything I do is creative, I don't follow a recipe in the kitchen; I make it up or alter what is suggested in the book. I make up my own knitting patterns and make it up as I go along when I'm gardening.
So the crafting thing has come about because of tidying so much in the last few months. I have come across so much in the way of art materials. These have been hidden from view so as not to tempt me. I get carried away with the passion of creating and can spend hours on one design without realising my tiredness or need for a rest. Now I feel a recovery starting to happen I will allow myself to start enjoying the creation while honouring how much my body can achieve.
This weekend not only have I enjoyed making Christmas cards from all my bits and pieces, I have found an online course to help me live as an artist. It will last 8 months and I feel it will give me a focus over the winter as my body regains some strength and gets used to more daily ritual day-to-day activities. The idea is that I will have regular support on how to be an artist, how to live and be fulfilled as an artist. I do so many things, depending on the season and my health, all of which surround my being an artist. Budgeting better within my business, understanding the marketing side better too, realising the full worth of my artwork (I only ever see the flaws, as I know every brush stroke which didn't go quite as planned!)
All this has to be part of my recovery, part of relearning real life. Most people I know who have followed this same path from recovery have found a focus after the initial focus on health with their specialists. Painting the house inch by inch, or learning a new trade, or gaining the qualifications to teach what they have discovered in recovery to others.
I am sure this is a good path to travel as I have always been an artist and my happiest times in childhood and as a young adult were sitting at a table with peace and quiet, colour and inspiration spread around me, creating something for someone else to enjoy.

"Infinite Time and No Ambition"

One of my yoga teachers says this a lot. Yes I get it, but have thought it a bit much... we do have deadlines in the world of socialisation and I was going along the path of thinking Lots of Time and a Few Deadlines.
But I think I get it a bit more now!
If I don't finish something this morning I might be able to do it this evening or tomorrow. Then again I might be able to say " I know I'll schedule a time to finish it next month and then maybe finish it a month later if that has to be rescheduled too!"
The concept of Slowing Down has been part of my life for a few months now and I am letting it spread more and more by getting this new idea too.
Tomorrow I have friends coming round. Someone pointed out to me the "Second Breakfast"... The Hobbit is having a birthday tomorrow; 75 years since the publication of the first edition and the Second Breakfast is being held worldwide at 11am. I offered her my living room and kitchen to host an event and raise money for charity, offering tea, coffee and cakes (suitable for Hobbits!) I knew that if I needed to take the morning off, she would be there to host, I could go and lie in bed if I wanted to, or do a meditation half-way through if I was getting too much information in too little time.
So it's happening and I'm having a cook-fest kind of day as I can!
Easy recipes are becoming my forte and I'm preparing a feast of breakfast inspired cakes, muffins and slices.
Infinite Time and No Ambition comes into this... I can cook this morning, this afternoon, this evening and tomorrow morning, so there is no problem about getting it done. I don't need to clean (my cleaner came Tuesday evening and blitzed the living room, kitchen and bathroom!) It can all easily be achieved with time for work, rest and play... or as I call it, fun, fun and fun!

I thought you'd like to see a recipe I have used, I totally ME'd a complicated recipe from a book and made it do-able with a mixer and little effort. Here's my take on Jam on Toast...
Raspberry and Sesame Slice
line a 9"square baking tin and preheat oven to 190C
ingredients
8oz/200g plain flour
8oz/200g porridge oats
8oz/200g baking marg.
put these in a food mixer and mix for about 5 minutes until it resembles rough bread crumbs
6oz/150g light soft brown sugar
4tbsp sesame seeds
add these to the mixer and pulse a few times to form grape-sized lumps
Spoon two thirds of the mixture into tin and use the spoon or your hands to press into base of tin so it's flat and even.
Spread 300g jar of raspberry jam(homemade is best, with seeds) over oat mix and then sprinkle the rest of the mix on top to cover jam. Flatten.
Sprinkle 2tbsp extra sesame seeds over top and press in lightly.
Bake for 25-30 minutes, until golden and cut into 16 squares while hot (leave in tin)
Allow to cool completely before separating.

Help Everywhere

I am constantly amazed at how many therapists, doctors, teachers of all kinds are out there offering help to sufferers of ME. All over the internet and in advertisements for massage therapists, yoga teachers, life coaches the helps is there. It is a mind-blowing field of information which can cost a small fortune! Scepticism appears in my mind with so many as ME is a complex illness. Those who have done many supporting studies and have proof of recovery are the ones who catch my interest more.

So many of them are using different approaches towards the same end. The body is in fear, physical confusion and the practitioners help patients find ways of changing these physical patterns. Gentle, kind, loving practitioners offer so much. Some ask a lot of money, some work for donation or offer lower prices for those who can pay only so much, and can run on lower costs due to the charitable foundations attached to the business. 

I have just found a book which is titled "Coping with Chronic Fatigue" I must have bought it so many years ago, because it was at the back of a bookcase and I had totally forgotten that I had it! It talks very simply about these familiar methods and puts it all in about 150 pages. (not a bad thing for people who can't read very often and have bad concentration and memory!) The need for personal connection cannot be put into words. So much of my recovery has been in the need for emotional support. My friends, family, specialists, talk to me on a regular basis, suggest new options... but only when I get to those points, not when I have read 3 chapters of a book in 2 weeks. One-to-one help, or methods with videos and information which can be used only when the next stage is reached, is so necessary. I definitely recommend it.

So why is it working for me now and might take longer for someone using the same methods? 
Firstly I have been using many of these methods for a long time already, they just never had a name or title and doctor attached to them? I know I had to be in the right place, financially and along my life path to benefit to the extent that I have from working with the specialists I have chosen.
I had worked through so many of my symptoms over so many years and found solutions for these. It took much desperation, determination and a lot of tears! If I hadn't done this I might be taking so much longer to recover to the same point as I am now. I am also in a place with a terrific husband who offers me unconditional support with this journey. I do not work, we are fortunate enough to have family and friends nearby who support me physically and emotionally. Without children or pets I can rest when necessary; I can have a day in bed or a lazy day on the sofa, lie in the garden all afternoon if I choose and have a lift to the surgery whenever I need to go. So many things in my life are going right and it is the years of experience with this illness that has given me the confidence to know what is right and make choices in my life to support that experience.

Social Boundaries

This IS one thing I find difficult. As I mentioned in Walking Boundaries so many wonderful friends can get the wrong idea if for one event I manage to walk across the room or look happy and dress nicely! Most importantly I set hte boundaries and I decide how much I can and can't do.
It is the explanations I might have to go through with the people who don't understand that knock me out. Question after question can be exhausting especially if there is no one else there to change the subject. "how are you" can be thrown at me and I have had a few text-book answers over the years. Currently it is "my good days are a bit better and my bad days aren't quite so bad"!
Usually that is enough now and I can ask the question back or find out about their children or holiday and the subject is changed.
Socially I don't go out for more than an hour or so. I am a member of a knitting group, a book club and a couple of other groups around here. But me actually attending is now understood better. I usually get there when the club starts, so there are sometimes fewer people and therfore less noise and less excitement (and less booze!) I go for a short time, my husband has a time in mind to pick me up. So when he knocks on the door I can leave without question. The decision to actually leave the house and go to these groups can be left to the last few hours or even minutes. I know how I am feeling and if tiredness comes on quickly in the evening I am able to just not show up and I will have an email in the morning letting me know how it went and checking if I'm alright. I also never make firm arrangements with people I know won't take a cancelation very well.
So how did I find these wonderfully understanding friends? Word of mouth is one of the best things. Local community groups have been my foundation for this. (some suggestions of these came from my neighbour, so word of mouth is definitely priority) I was a member of a choir and an amateur dramatic group in my twenties and made attending these my priority in the week...even just sitting and reading out a couple of lines was enough to make me feel involved. Through these groups I met people of all ages and know many of them still. I have also met so many of my friends through other friends. My husband and I started going to church again, when I was well enough, a couple of years after we were married. An occasional Sunday and I would have a good sing, a silent meditation and some community spirit. So many churches have the simplest things as coffee mornings children's outings or sewing groups and even if you are a totally different age to those who attends, I bet their children or neighbour will have exactly the same hobby or illness as you and will became regular contacts!
One thing I have done constantly is tell the truth. I get better feedback from everyone I meet if I don't try to be someone else. I am who I am and socially the more people who know that the better.
 "I have ME"
"oh isn't that the one where you're just tired all the time?"
"yes that's part of it, but it's an immune system disorder and neurological illness"
Say immune system and neurological to anyone and they get the picture well enough.

Walking Boundaries

I cannot emphasise enough how important it is to choose the right boundaries.
I am learning as the months go by that my recovery has to be decided by me. My physical limitations have to be stretched and pushed... but only so far and within good boundaries.
Where and when I decide to stretch those boundaries is probably just as important too. Going for a walk started with meditations around the garden, then walking, with my husband, where no one knew us, on flat ground, with a wheelchair in the car if I needed it. I wasn't panicking or being overly cautious, I was just aware of my needs and stretched them accordingly.
So where this happened was important. Being in a place where I was unlikely to come across friends was important. Friends can be the most understanding but can also decide to imagine the best and be incredibly positive ("wow you're walking, how about we go shopping together next week, or I bring my children round to see you for the afternoon!"). Also they can start worrying and suggesting the worst ("Why are you walking, you should sit down, do you want to lean on my arm, you are silly for doing this, I could have got you anything you need!").
So positive and negative input could be found, but I had gone out knowing that it was the right time and place to do this. I needed this input from my own head, rather than anyone else's. Also meeting people who want to chat and ask how you are when you're taking steps outside for the first time in many months is not going to help!

When I stretch these boundaries has proved important too. I first walked outside  as described above in a town centre... but late on a Sunday afternoon. Shops were quiet, people traffic was very low and the pedestrianised high street meant that I had no standing and waiting while vehicles went past. I have done the same as I started walking alone from the front door. I was doing walking meditations from my doorstep and short walks around the block now when there is less chance of meeting people.
One mistake I made this morning was walking to the doctor's surgery because I had to. I should have asked for a lift. Doing things because they have to be done at a certain time on a certain day is just not realistic. I know I have to do what my body wants to do, when it wants to do it. And if that means missing out or doing less than I hoped I know it is for the best.
I'm happy to know that I am doing well with my boundaries as they give me the chance to recover at my pace and not anyone else's

Little Miss Sceptical

That was me. And for so long. When I was ill, bed-bound, housebound, finding so little energy every day, crawling to the bathroom.
If you recover from ME, you can't have had ME in the first place.
I'm sorry. I admit it.
Where and why has all this changed?
I have seen unimaginable changes in myself.
The last month has been such a revelation. I have seen myself grow beyond measure. And most of that has happened inside. I still have very little energy compared to the general populous. However what energy I do have is being used for my benefit and my body is accepting what I do as totally normal. Before I came here, walking around the house, having a shower, cooking eggs was totally scary, totally unnormal! My body would react, be scared, physiologically the reactions were uncontrollable. I could do nothing.
I am walking outside a couple of times a week, I am cooking with aids, I am enjoying life for what it is... and all this is done without the physiological reactions that define ME.
My whole system has changed and I have been the instigator in that change.
I feel liked I've proved a miracle. So much of it has been about having faith, believing in whatever helps. And its also helped that I've always been a thinker, someone who analyses, so being able to understand the reasons for it.
ME is a common sense disease. It is the body saying "hang on a minute, let me rest, let me breathe, let me have a chance to start over" It is appearing and being identified so much more in our modern world as society and modern life expects so much of the human body and so many of us haven't quite reached the evolution point which helps us deal with society and modern life.
Everyone needs to say, "hang on a minute, let me rest, let me breathe, let me have a chance to start over" once in a while and probably so many other diseases would reduce too!
So what can I say about this week specifically...
I had my first organic veg and meat box. There is a chicken ready to go in the oven tomorrow (I'll make sure OH is around to do the lifting!), we've eaten cajun pork burgers, today I'm going to cook fish from the freezer and we have fresh runner beans with mixed salad leaves and romano peppers ready to fill our bellies.
The one non-local thing (other than the organic bananas!) that came in the box was a mango, which is sitting on the window sill and will hopefully ripen by the weekend for an exotic treat.
Life is beautiful.

Legs Playing Catch-Up

My legs aren't quite with it today. I have to stretch what I know I can do occasionally, to see whether another level of exertion is possible. Yesterday without my realising it I was testing my legs. It hadn't really been planned.
In the morning I did my usual wake-up yoga, then did a 45minute class about setting intentions and clearing out- specifically titled Waxing to the Full Moon (Full Moon was 2.47pm yesterday). Traditionally nature grows more as the moon grows in it's cycle (obviously with  manmade chemicals and light pollution hanging around now, that doesn't quite work anymore!) The class included some balancing poses, standing and also a Moon Salutation cycle. Sun salutations should probably be avoided by ME patients- that's my experience anyway! But as this Moon salutation started slowly, I was willing to give it a go. With my now better breath control, I managed quite well and as always I just planned to leave the rest of the day without much walking, now that I had started with a standing yoga class.
I then made the pie after breakfast and had to return three times to the kitchen to keep checking the pastry and fruit at 25 minutes, 35 minutes and 45 minutes.  That shows me the one failing of using my own guesswork rather than a cookery book for the kitchen creativity. Sitting in the garden with the kitchen timer wasn't a good idea as going in and out so many times probably ended up with a total walk similar to my average walking meditation.
We then went around the supermarket! Oops!
And popped in to see a friend whose front path is on a particularly steep gradient.
So I've had a sleep this afternoon and an easy morning, just getting in the car with OH to pick up an internet order and I had no option but to use the wheelchair. I have a willing husband for cups of tea and Paralympics to keep me going.
It has been really nice to choose to use my legs, even if I don't have the choice for a couple of days now. I would not go back and undo yesterday.
This is why I get Disability benefits. If I can't do simple, necessary walking more than a couple of times a week, I definitely require help!

How's It Cooking?

You may be asking, it may be the furthest thing from your mind...
I am cooking.
A little by little I am finding interesting things to do with my limitations. First thing was cooking 12 meatballs in a frying pan on Monday evening. I took some tomato sauce from the fridge, which was preprepared and also found some salad. Toasted two half bagels and hey presto. With the salad leaves and bagel, a half pepper roughly chopped in mid-air over the bowl and chopped up some of the cooked meatballs, our appetite was satisfied. Then we had a piece of fruit each and OH had some ice cream.
Tuesday lunch was easy (guess what!!) but I gave more thought to my breakfast. I toasted oat flakes, quinoa flakes, pumpkin and sunflower seeds, from a ready mixed packet, mixed in raspberries for the last minute and once it was in a bowl I mixed in two generous spoonfuls of yoghurt.
By Wednesday I was exhausted. Not surprising really with the longer weekend! I still hadn't done any washing... did I care! no! we still have clothes in the wardrobe (I had purposefully made sure last year that we had enough underwear and clothes to see us through for 14 days if I just couldn't cope with organising washing and husband was too busy elsewhere).
Out came an emergency stash of chicken and pepper from the freezer and I ate it with more salad for lunch. (what am I going to do without salad in the winter!)
Yesterday I finished the meatballs with more salad (today I made a dressing!) and made scrambled eggs for breakfast. It was another day on the sofa for me, but hey ho!
Today I have sat at the table with unripe peaches, peeled them, chopped them and put them in a pyrex dish lined with shop-bought pastry (I am so looking forward to making my own again!- I wish I could buy wholemeal pastry in the shops!) In went a tablespoon of brown sugar, the peaches, two stoned and quartered plums and some raspberries from the freezer, another spoonful of sugar and over went the rough edges of the pastry with a finger of butter to stop the edges burning and into the oven. 25 minutes, 10 minutes, and 10 more minutes later out it came... I am so pleased I could lift it up to check the sogginess of the bottom with the see-through dish!
So it didn't take long. Chicken in the fridge will have to be easy-peasy with tomato sauce and rice I think. I was hoping I could manage a quick curry, but that might wait until tomorrow.
You see; it's not cooking too badly!

A New Diet Plan

About 12 months ago I spent most of every day lying in bed. I struggled to move around the house. I found standing for longer than a couple of minutes difficult for many reasons- lightheadedness and balance, weak leg muscles and aching hip and back joints. I was in a crash stage of ME, no matter how much determination or courage I had, whether I was frustrated or calm, cross or relaxed I had no energy. My body needed to heal and it needed a few months off for that healing process to take place. I had to let it happen.
As you may remember from the blogs, eggs and dishwashers post, I found standing in the kitchen for 8 minutes to organise eggs for breakfast an amazing miracle. That happened in February. It was repeated a couple of times every week and only once a day. As the months went by my balance has allowed that to happen more often and my body is learning to move around the house and outdoors with more ease and a stronger posture.
I can stand in the kitchen and cook. I still have problems with the preparation of food, my wrists are strengthening, but I cannot chop vegetables without painful consequences and mixing ingredients is also an issue. I have modern technology to help me there!
I have decided to encourage this back into my life. Each part of survival has to be practiced again, standing and walking is happening, eating food is a daily part of life, so I have chosen it as my next hurdle.
It may be a hurdle but it is oh, such an enjoyable one!
My new diet for the next month begins with a food delivery in about a week's time. A local organic farm delivers it's own produce and that of other suppliers, so all in one go I will have meat for two weeks, vegetables, fruit and dairy for one week. My challenge is to cook easy fresh meals regularly with these prize winning, tasty ingredients.
Can it be done? I have gone through my collection of recipe books. Some of the options taste great, but 10 or 20 ingredients are involved and 45 minutes preparation! I went online to look at 10 minute cooking, 20 minute cooking recipe books. It might take less time, but still vast numbers of ingredients! I'm not filling my cupboard with food, just for an occasional teaspoonful! So next option 5 ingredient cooking... gourmet food or American cooking, full of measuring cups and strange ingredients- I don't know those options in the UK!
This is when I thought I'm about going to the organic delivery option, good food just needs a fry, boil, steam, a few minutes under the grill, or a quick and easy casserole or stew. The taste will speak for itself. I have a creative nature and enough interesting pre-prepared delights to fill the tastebuds (ready chopped frozen onion, garlic, peppers and fresh herbs!) So it is an experiment in giving myself an extra boost towards recovery. Nutritionally the better food will help me heal and recover more quickly and with the practice in the kitchen, the confidence and physical flexibility and strength will be improved too.
Wish me luck!

Feeding ME

And feeding me.
So food is a big thing in this illness. In any illness. A lot of illnesses create food restrictions but the one constant that comes around is A Healthy and Nutritious Diet.
So how can this be achieved with little energy, sometimes very little energy to chew, and digest, as well as the issue of preparation?
Over the years I have experimented, finding budgets restrictive and being able to actually get out of the door to do the shopping. When I came to a crashing halt two and a half years ago the simplest option became quick food to stick in the oven and make it easy to eat too. I spent a lot of time eating supermarket pies and pasties, ready meals and left overs from my husbands efforts in the kitchen. His weekly pasta, with jar of organic tomato sauce, frozen chopped vegetables and tin of tuna was the normal offering for sunday lunch, also feeding himself and I for a couple of days into the week. Cottage pie and spag.bol. became another easy option too, both of which would be made with turkey mince or lean organic beef mince. We also ate a lot of home made potato wedges with pieces of breaded fish and good old toad-in-the-hole.
A lot of the other meals consisted of wholegrain soda bread toast or sandwiches, with organic eggs or sardines, an occasional banana and sugar-free fruit yoghurts from the baby section of the supermarket. So much carbohydrate is easy fuel (but ironically can also encourage lethargy) and as I tried to include protein with every meal the energy lasted a little longer too.
About a year ago I applied for and was awarded  Disability Living Allowance. I still receive it and it is critical to support me through this recovery. ME is such an unpredictable condition that a sustained recovery into good health has to be maintained before benefits will be reduced or stopped. Some authorities are more understanding of the illness now and will be supportive of the condition. I have spoken to Citizens Advice Bureau representatives on numerous occasions and am assured of my need for this help as I recover. (that is a story for another blog post!)
So this gave me a little more scope as far as food budgeting was concerned. I changed tactics and started using a different supermarket, with more healthy, easy to cook options and our diet has improved as a consequence. Having to buy pre-prepared food will always mean the prices rise, but it has been a necessity at this stage of my illness.

These very good guidelines are given by the ME specialists I use (link)
Use the 80% rule... let yourself off if you stray from the suggestions 20% of the time
Cut out toxins in the form of refined sugars, alcohol, caffeine, refined carbohydrates, processed meat and food with un-pronounceable ingredients!
Include 3 pieces of fruit every day and add vegetables or salad to every meal.
Reduce dairy and wheat if the body finds them difficult to digest. (this is more than likely to be temporary unless tested otherwise by a doctor)
If the budget can only afford a little organic produce make it meat, as the meat will also be eating food- you are what you eat and what your food eats! (In my kitchen the daily staples are organic... yoghurt, eggs and butter, bread, pasta and rice, flour, tins of tomatoes, fresh soups and when possible meat and vegetables. As a compromise I buy free range and British, and choose the suppliers with the better standards in growing and producing)
Choose smaller fish as the toxin build up will be comparable to its lifetime- ie avoid tuna like the plague!

I stick to these rules 80% of the time and let that stretch over the week. Days will come along when the exhaustion and/or fridge dictate the need for an easy option. An occasional take-away or shop-bought sandwich and bag of crisps isn't going to prevent my recovery!
So I'll tell you about how I'm hoping to improve on my current diet next time...

Pain

hip throbs
thigh aches
ankle stiffens
knees quake

head fuzzy
eyes battle lids
neck bends
shoulders hollow
elbows jointless
are my wrists the size of my chest?

everything so noticeable,
all feels enlarged
take a pill for it
is all very well
i still feel it
ringing like a bell

A Room With A View

“Life is a public performance on the violin, in which you must learn the instrument as you go along.” Mr Emerson says, quoting 19th Century author Samuel Butler.

Long Weekend

Something which I have noticed more this week than before is how different my weekends are to my 5 day weeks.
Over the last few months the 'spare bedroom' in our house has been tidied and largely emptied to become my 'quiet room', 'yoga room', 'rest room'.
It now contains all my knitting yarn, my yoga mat, blocks and bolster and a shelf unit with bits and pieces which have no other place in the house (gift wrap, jiffy bags, DIY tools, you know the rest!) and most importantly it has the wonderfully comfortable chair and footstool that I mentioned in last weeks's post.
So this weekend I had a new option. When I was tired or just wanted some quiet time I went in there and my husband took over. The door was knocked on, the phone rang... I stayed in there and said to myself "I'm not getting involved, he can sort it out". The beauty of it was that I couldn't hear the resulting visitor or conversation, so unless it specifically involved me I did not need to know what was happening.
Now the week is nearing its last days I know how different it is to be living in the whole of the house and having to get involved.
It exhausts me somedays.
On Saturday we detected a gas leak near the front gate and my husband dealt with the whole situation, answered questions, gave me feedback when necessary. I have had to continue the work as the leak was not resolved until Monday and I noticed the difference, waiting for engineers, answering questions, not sleeping or resting in case they knocked on the door and I didn't hear them.
I also notice how much I let OH take over in the kitchen. I have been quite lethargic all week and really struggled to do much more than a mug of soup and a roll for lunch. The stash of meals in the freezer has run down as the warmer weather has put us off from heating the oven and organising larger meals. I've been relying on eating fruit and salad- not much good when 'ripen at home' peaches go mouldy when they haven't ripened yet!
Oh well, enough moaning for now! So I need to find a way of dealing with the gas leaks and mouldy peaches, empty freezer and broken oven (that's another story!). For now I think it will just have to involve escaping to my IKEA chair and yoga mat even if the phone keeps ringing. And I do know I am looking forward to Friday when I will have three days in front of me without getting involved!

How...

do we recover?
This can be a short or long process, an easy or tough process. Everyone is different and no one will go through the same journey towards recovery. Quite simply the body needs to be retaught how to do things and taught to do things without being afraid. Scream at the top of your voice, like Macaulay Culkin in the film Home Alone "I'm not afraid anymore" and you will notice a new confidence.
From there it is all about patience. I have not recovered yet, but I am well on the way. I feel different inside. My heart doesn't beat like a pig's when an unlikely situation occurs. I don't have so much cognitive exhaustion, as my head is clearing out the stress and worry. By practicing meditation, teaching the body to relax I am on the right path. It is almost like soothing a crying baby; when the symptoms appear, I notice them, ask them why they're here and realise something is needed to soothe those symptoms. It is the ability to step back and see the emotions, feelings, as a message from the body that helps the messages relearn. Yoga has taught me a lot of this, from all sides, meditation, mindfulness, postures.
Yes it is a pain to have to go through this process, yes it doesn't work all the time. I get confused and worried, tired and cross. But the more I notice and change the responses consciously, the more the unconscious is learning to have these responses for me.
One example I have for you is the walking meditation I am doing... I have never walked so slowly and so confidently in my life. I take slow steps, feel my legs, my feet stretching into the ground. I feel my spine elongating and rising towards the sky. I notice views and noises that I have not noticed before. It is a short walk, a slow walk and quiet walk (away from traffic and bustle) my body doesn't need to be afraid. This response will be taken, in time, as I walk in other situations and I will be able to walk with steadiness, calmness and confidence further into my life.

So much of what I am writing appears to be about the mind changing the body, but this is about the brain changing the body.  Please note that it is the unconscious brain that is making these decisions. Everyone with ME may have to work with the conscious mind on an intellectual level to recover, to change the brain-body. ME is a physical illness, with physical symptoms and it is the physical responses that need to be healed.

Why... Why...

do we have ME?
ME can be caused by numerous things, mostly physical and mental traumas. The straw that broke the camels back is more usually a virus and serious infection. The physical confusion caused by trying to heal this intruder results in the shut down of all but the most fundamental unconscious reactions, such as breathing and circulating the blood and oxygen around the body. Without the nervous system and stress responses working in conjunction, the healing doesn't take place satisfactorily and the body is stuck in confusion; fight, flight or freeze.

do we have symptoms?
Symptoms are the one way the body has to alert us of danger, something not working properly. A lot of symptoms, rashes or numb toes and fingers, are simply because the energy flow throughout the body has been compromised so severely. Exhaustion and insomnia is quite simply because the body is on such a high alert- def con 1, or tiger in the corner of the room- and this is constant. Physically the systems have forgotten how to recognise danger. Symptoms, light and noise sensitivity, food allergies, chemical sensitivities are there to say "that might be dangerous, be aware because I'm not sure"

What...

 is ME?
ME is dysfunction of the autonomic nervous system, the sympathetic and stress responses and the immune system. All come at once.
What we need to recreate is the correct responses by all these unconscious physical systems. The root of the nervous system is held in the brain and the spine. From there it reaches out to every part of the body.
In ME the body's stress responses are not working, it is locked in Fight, Flight or Freeze. The parasympathetic responses control the ability to relax and heal. Without this the body cannot recover and learn to live healthily again.
The immune system, again lives in the spine and can be working on overdrive or in complete denial of any foreign bodies. Both these states causes the body physical stress and of course, when the body is ill, the cognitive stress comes along too!

Heat

I have been resting, meditating, escaping from the heat. By body just can't cope with it. I feel physically drained. I tried a shower last week, thinking it might cool me down, but it didn't work very well... the cool option was excruciating, the warm option just made steam erupt from my body!
There are a few cooling breaths available to find on You Tube, Suzanne's is the one I use most.
Also water from the tap and most days at least once I am eatin ice cream. I don't do a large bowlful, or like a friend of mine a tubful (you know who you are!) I put a few spoonfuls in a tumbler, and just holding it cools me down to start with. The option I went for this evening, was ice cream in a mug topped up with raspberries from the freezer (frozen from the PYO  a couple of weeks ago).
I have been hiding in our front room, which avoids the sun until late afternoon, and then, thanks to the positioning of nearby properties, only has that for a couple of hours. So I've sat there knitting and resting,listening to audio books, meditating and doing a bit of more active yoga and basically avoiding the inevitable heat that the rest of the house and garden exudes.

Walking Through Treacle

A friend visited last week. I only met her recently, it was a meeting my husband had first (he does get out of the house more than I do!) he introduced her to my email address and we arranged to meet up for a cuppa. Our meeting was quite a surprise, I had only met one other person- coincidently this year too- who had experienced ME for as long as I. This new friend, I discovered, had been coping with ME for over 20 years too and since she had been at school. We have a lot in common there!
One thing she has introduced me too is her jokes and laughs about the condition. One thing she says is how having ME is like trying to walk through treacle! I suggested when I heard this that we might also try filling a swimming pool with custard instead of water!
It is good to be able to laugh about this. Last week when she visited with her young daughter a small collection of cartoons came along too. It was strange to remember all the jokes that had been thrown at me by the charity magazines when I had been so ill all those years ago.
So many of them show someone trying to cope in a work environment, or cooking at home, with bags under their eyes and eyelids failing to open.  Walking with lead weights tied to the ankles (I still feel like this when I'm wearing my heavier trainers or winter boots!) and arms pulled down with bags of heavy shopping- the next picture shows that the person is actually only carrying an empty bag! Others suggest that sitting on the edge of the bed in the morning, going in the bathroom, then eating breakfast is so much effort that the day is achieved by then and bedtime arrives again after only an hour. They are so true!  In some ways it is tear-inducing to see some of them. To think that there are pictures showing how we might look after hours of effort to leave the house, followed by pictures of how exhausted and painful we can feel.
Laughing at these cartoons can help sometimes, but most of them help us remember our darkest days and they will be insights of others, not our own interpretation of the illness. We also need to realise that we have to get past these images to find the truth. A lot of psychologists teach that imagining something is the first step to believing it, which then leads on to achieving the imagined and believed goal. Imagining something might be scary, then believing it is possible is actually immensely motivating. To put this into the context of ME, actively pushing and asking for physical therapy (I did small exercises every other day when I was doing nothing but lying in bed and I know they helped remove me from that position), nutritional assistance, pain relief from a regular massage or medication while it lasts, is working towards those goals. As relief begins to show itself, recovery is more believable. I started imagining recovery a long time ago, but it would be with despair. I was told constantly by doctors that recovery wasn't achievable. So where would I go from here!? Now I have a belief in recovery because by doing the things mentioned for myself, the goal of recovery doesn't seem so far away. I'm hoping, and believing, that by building up my energy so slowly and carefully, that this time recovery can become a reality. This is the point I have reached before and just gone headlong into fully energised activity. It wasn't the right thing to do, my body just wasn't ready for such a shock. I have to be aware of any signs my body gives me and listen to them mindfully.
I'm realising that I have to start leaving those cartoons behind and find my own reasons to laugh which are more in tune with a healthy life.

Sitting Comfortably

I seem to be finding this mundane task so difficult at the moment.
None of the chairs in the house support me properly without cushions and rolled up blankets. With what most definitely feels like a detox happening right now, my body wants to curl up, even though I'm also craving a tall spine and open heart. I have a horrible feeling this is going to mean spending money. With the awareness I now have of my posture, how my position relates to comfort throughout the rest of my body too, I realise that sitting in bed with numerous pillows creating a triangle of support behind me is one of the only places I can find comfort when I'm having a tired day. The other option is lying on the floor or on the grass in the garden. I also have a chair in the loft, which has found very little use or space in our home recently. It has come down and gone up again a couple of times since we moved here 6 years ago. Many of you will recognise the frame, a simple supporting curve which rocks slightly with a little encouragement. I bought it when a well known retailer first came to the UK about 15 years ago...A friend was going on this iconic trip and had a shopping list from me another couple of friends...no one else we knew had been, as it involved about an hour and a half in the car to get there... come on can you guess?
Well done! here it is!...(mine has a much nicer dark blue cushion and I have the foot stool to match!)
I was in a worse state health-wise then. So I did find it comfortable. The sofa-bed I had in my bedroom was my one seating option if I wanted a change from sitting in bed (I had a difficult time in those days and was confined to my bedroom for months at a time) - and sofa beds from mail order catalogues were not comfortable at all, I don't know how my Mum could bear sitting with me so often and for so long. I love her even more for doing that! I knew by then that my much loved beanbag of my youth was not something I wanted to return to, so a grown-up chair it was. I had a romantic notion then that I would keep the chair for years and rock my baby to sleep in it... not something that has happened so far! My romantic notion now is that it will come down from the loft and be more comfortable than the sofa until we are willing to stride out into the summer sales and find some new furniture.

News Flash!

I am sure many of you are aware of the report (link) which came out in the UK a couple of weeks ago about the different ME/CFS treatment options. I would like to comment on this in as frugal a way possible, but come from every angle too, so forgive me if this post is longer than my usual posts!
Its title is as follows:
Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis

So it is looking at four different treatment options, with a focus on specialist care and how each of them appear as a cost-effective way to treat ME.
The "long term" description is paramount here, looking at fatigue and physical activity improvement over one year. (in terms of ME, one year is on average short-term!)
It also takes into account the quality-adjusted life years. Cost-effectiveness looks at the different length of appointments taken with doctors and costed per hour, also price of any medication. Also taken into account is loss of gender and age specific man-hours at work or because of fatigue while at work and time taken by informal care from family, friends and volunteers- all of which is costed by the hour. Pensions or disability benefits paid were not added to the equation.

The conclusions were that CBT and GET were the best options using these criteria.

All treatment options will work for someone and if you are newly diagnosed, if these options are suggested for you I suggest you become aware of your needs and try them if advice is given in that direction. If you have to go to three, five, ten  different GPs to find someone who will recognise your illness and help you find solutions (this is true for any illness!) then do that. The doctor who has an understanding of your symptoms will guide you in better directions than the doctor who is disbelieving.

Charities and media have immediately jumped on the band wagon and started surveys of their own denying that these two treatment options will work for the majority. The difficult point here is that charities, websites and forums for ME tend to pick up the patients who have tried options, and not had much success, so are searching for new ideas, or are trying different options for a vigorous symptom before trying anything else (like I was with my seizures). Also patients who have been ill for many years, so the body has deteriorated more than it would have after just an initial crash, for these patients it is likely that more intricate or tailored treatment will be needed as secondary symptoms and illness might have taken hold. Charities will bring out surveys and have done in the past about how effective different treatments are compared to each other and it is more likely to hear from patients who have not had success than those who have and are out in the big wide world wanting to forget that part of their life!

Different stages of the illness need different options. For example when the first crash happens the last thing you need is increased activity week on week, restricted activity for as long as it takes is better encouraged here, even reduced activity and regular rest periods. (All these are examples of GET and with an experienced guide you will have the right options at the right times) But if this as addressed as continual rest with no activity and is continued for a year, like in the report's option of Specialist Medical Care (advice for coping and symptomatic pharmacology), then this may be too long. After as little as three months or as long as nine months, if the patient's needs are assessed and GET is then begun, the results might be much better. So two options within one year, for this patient, is much more effective than choosing between them. Once the year has gone by, maybe another 6 months of GET will be ideal, but you can't live your whole life by a stop watch, doing and resting for specific times, so awareness of the body is essential  (Adaptive Pacing) and realising what went wrong to put your body in this state in the first place- CBT might help here- could be the necessary catalyst to full recovery. All four options have been used in total, and adaptive pacing might be needed and utilised for a lifetime as it brings a much better awareness of the bodies needs.

We have to be aware as an ME community that all research is good research, but probably cost-effectiveness maybe not such a good criteria to add into the hypothesis!
ME comes in many guises. New research released in April of this year shows how breast cancer can now be  given 10 different diagnoses and 10 different treatment plans (link). ME research is currently concentrating more on the symptoms and individual parts of the body.
Holistic medicine has become the watch word of the medical community just like knitting has become the watch word of the craft world. When the body is looked at as a whole person, an individual, the resulting conclusions can be  much clearer.  WIth as in-depth an illness as ME we are nowhere near finding a single term for the illness. I believe this umbrella term might hang around for a while, but we are much more likely to have a different form of individually tailored healthcare  available to us soon as cellular level understanding improves. We have immune system, autonomic nervous system and mal-adaptive stress response dysfunctions, we don't have Myalgic Encephalomyelitis.

So they are my conclusions based on the bare facts of the study and my knowledge of the illness. Don't dismiss any research of ME without reading it yourself. You are the only one who can have your opinions! Lots of surveys of a similar nature have come out in the past and will continue to appear in the future. Remember too that red wine and chocolate should be consumed every day, or should they, what did the last survey say?! trust your instincts and make your own choices.

Detox

What is happening those few days when exercise just doesn't come and  digestion is corrupt. It can feel like a flu, a stomach bug, a total confusion. Without the muscle aches from before it has been suggested to me that it could be detox.
My body has been keeping toxins like its hoarding for an Armageddon. Where do they go? As far as my logic takes me the 'dark side' is sitting in the crevices, the shadows, waiting for an opportunity to attack.
My body hasn't gone so far as some. I'm not ready for that yet. In the final stages of recovery. where nearer normal activity is achieved, I know some patients who have had a ridiculous number of cod and flu bugs within a matter of months. The ME patient is likely to have either an over active immune system or an under active immune system. In an over active immune system- like mine- my friends will have colds, flus, my husband will complain about hacking coughs and the dreadful bugs that 'go round' at work, he brings the germs home and I catch nothing. Or so I think. I noticed last year when it was pointed out to me that an immune system in dysfunction could go into overdrive, that my colds and flus were actually present but were very mild. I had only thought that a sore throat was a symptom of ME. But that I realised that I would have this for a while and then it would go away, I might have blocked sinuses for a couple of days and then nothing. It was the over active immune system that sent me to bed for the following two weeks that gave me the clues. It was fighting so hard I had no energy to do anything else. My colds had so few symptoms other than extreme exhaustion.
A friend of mine who also has ME must have an under-active immune system- she has colds and flus like they are ganging up and persecuting her for some unknown reason.
As I have been so exhausted and unable to move when these viruses and bacterial infections hit me they sit and wait, in the muscles, body fluids- in some ME research, proteins have been found in the spinal fluid which distinguish ME patients from Lymes disease and healthy controls.(link)
All these cold and flu bugs are waiting for the body to deal with them in the proper way. For now it is the smaller every day toxins that the body has found it hard to eliminate. I am no doctor or cellular biologist, so wont attempt to explain it, but I do know that as my energy channels open up, for example the ability for the arms and hands, the legs and feet to have a more regulated temperature and a more normal blood pressure, then I will be clearing out these spaces and will notice the muscles feeling less tense as I take a day's rest.                
I mustn't be so afraid of a little exhaustion as I have been before. My legs don't collapse beneath me, I just fancy a sleep on the sofa during the day, or a quieter day in general. As long as I continue to be aware of what my body needs I will be progressing well.

The ME Community

I joined a couple of ME groups after I'd been ill for a few years. They gave me some information, a few jokes and cartoons about having ME and also offered a  few contacts which might help; a video rental and audio books by post company, for example.
Overall I found them, in those days, to wallow more in the fact of being ill. Not particularly helpful on trying to get better.
I want to suggest a few metaphors to you...
Imagine you are building a house. First job is to clear the land, maybe demolish a previous building or clear an area of vegetation. This would represent the beginning of the illness, the original crash, taking away the body's health and realising the life you had before has to be cleared of unnecessary activities.
Secondly you talk to an architect, check the designs and build the foundations. So talk to the doctor, find a diagnosis and try some options through the doctor's recommended treatments. Join an ME group or read some charity websites and relevant  books and realise the vast quantities of options that are out there. So utilise their resouces withou t clingin to them, this is your recovery with your body.
Third job is to begin the process of the exterior and load-bearing walls.You need a planning officer, a project manager to guide your progress and the job starts quite well. You follow your doctor's advice, or begin with an ME specialist, maybe also pain therapists and nutritionists, so the first steps to understanding the condition and initiating recovery have started.
Fourth job will include the roof and windows, also interior walls. The design can be changed at this point with inside walls maybe taken out or added. Weather might come along which prevent the roof going on for a few weeks or months. Little set backs can be disappointing and will lengthen the build time. You probably get the idea from here that treatment strategies might be working brilliantly and the more expertise you have guiding you the more likely you are to be able to choose the best options from the beginning. However no matter what is predicted little things, like a sudden virus, a family crisis, anything which will take away your energy from the treatment process, can delay the recovery. Just know that the building will be built and recovery will happen. At this point you might dip in and out of the ME charities still looking for advice sometimes, but realise that you have to choose your pages wisely- you're not at the onset of the illness anymore. The stages of illness are paramount. If you have had a storm come along and needed to rebuild, the charities and local groups might be helpful, but also your doctor and ME specialists who know you best (and most importantly you!) will guide any rebuild that needs to happen.
During the fifth stage, once the roof and windows are in and the interior walls are set in place the exterior builders can go home. The same project manager will continue the process, guided by your opinions and new experts are brought in to choose interior designs. Wallpaper, carpets, plastering, kitchen and bathroom fittings and any permanent features in the house like electrics and heating which haven't been set inside the interior walls. So the process continues. In some ways this is the most important. Having prepared the canvas by removing as much pain as possible and any more of the more rigorous symptoms more energy will have been achieved. So confidence is built, maybe advice is taken from yoga teachers or general life coaches who help people through the transition from chronic illness to better health and re-entering day-to-day life.  Habits and activities need to be set in place so the illness doesn't relapse as the recovery is continued.
Finally the furniture is chosen and garden is planted up to create a home rather than a house for many years pleasure. This takes time and will be changed as the months and years go by. In recovery new ways of life are chosen. Meditation and yoga might be continued for a lifetime, a more conscious way of living, in tune with the body and aware of its fitting in with the world.
The length of time this whole process will take is not set in stone, but as with house building the more firm the foundations, even if they have to be rebuilt a couple of times, the stronger and more secure the future of the final build.

A Day Off!

This is an interesting piece. Yesterday was my first day without posting a blog page for over three months! and some days I have posted two...
So what happened?
Some weeks I sit and write three, four, or five blog pages at a time. In an hour  I have enough writing capacity to actually do that much. I may have been jotting down titles and thoughts for the previous few days and then it all comes out at once.
For the last few weeks, since we went on holiday, I have not managed that. It has all happened sitting in bed, on the sofa, bits and pieces here and there. Why? I know the energy hasn't been there in quite the same way. I started to walk on holiday and have tried to keep it up. Two or three days a week, since then, I have managed a five minute walk out of doors. This morning I did a five minute walk followed by a sit down, followed by a five minute walk back home. I had been scared to do that before, thinking I might not be able to get up again after sitting down! (so often in the past I have had to rely on others to get me back home after my body failed to achieve it for me!)
So has this been a bad thing or just the only thing that has kept me going?
On the bad side I have not managed much in the form of yoga exercise. I come to the mat and the longer sessions just don't happen like they used to. I am not managing 45-50 minutes session  every day, just maybe once or twice a week. My hope is that I find a steady rhythm that allows me to have regular daily movement, which isn't punctuated by the breakdown, the crash, the disappointment of exhausted days.
This has me confused and wary. When I started the regular activity, after a couple of months of complete rest, at the beginning of the year I was doing 5 minutes every day, which has slowly built up. I'm trying to piece together where I am, how I'm doing and trying to concentrate on the moment to moment improvements, as well as the month to month improvements.
I think the only solution is to wait and see. If nothing has changed in a few weeks time I will know something is going wrong and might stop walking intermittently and concentrate on finding a better flow, or I might notice that the active yoga has improved and the day to day activity flows between walking and yoga asanas quite well.
This is a confusing situation I've found myself in for the last 24 years. Finding a different way round yet again must be a good thing and using the information I now have at my fingertips to guide that, is a good thing. I am trying to recreate the recoveries that have come before me but doing it in a way that is right for me.
Excuse me if I start missing days, if I find I can start using my head and arms for different things other than thinking about and writing blog posts it will be so nice to start doing them and abandon you instead! Be aware I will not leave you, just take a break now and then and probably have some useful insights to tell when I do return.

Learning To Love Yourself

Is the greatest love of all.
I have been listening to two ME specialists today. Both of whom mentioned how important trusting, believing in and loving yourself can be on this sort of path. It is not something we have a lot from doctors or even some of our closest friends or family when we have this illness. So knowing that we are doing the right thing by believing in recovery is essential.
If a bit of loving kindness means listening to my  body and resting one day, without despair and a feeling of failure, I have achieved something.
If loving myself is showing how important I am with a piece of cake as a treat, without guilt and dread of consequences, then I am doing the right thing.
If loving myself is taking a nutritious green drink, meeting my yoga mat every morning and meditating before a peaceful sleep, then I am following the right path.
Learning to love yourself is the greatest love of all. (Link)

Dream Number Three

I am walking!
Every Sunday afternoon, on holiday, two or three evenings a week, because I want to walk. I walk to see the joy around me, the nature, the wildlife. My husband has an amazing memory, knows butterflies and moths, insects and spiders (not personally, just enough to identify the species!)
To put on a thick waterproof coat and hiking boots, a rucksack with flask and gloves and know I can go out with the intention of coming back on my feet will be amazing. The thought that I might want a warm shower, or a collapse on the sofa, but not create exhaustion and pain for three days to follow will be even more amazing.
I have always loved walking, as you may remember from another post.(link) The feeling of fresh air in my lungs, freedom and a chance for solitude. Walking to get groceries is something totally different. Where I live this cannot be done without seeing someone to stop and have a chat, smiling and saying "good morning". As nice as that may be, solitude with exercise is definitely necessary. As much as this can be achieved in the garden, thought needn't go into a familiar walk other than finding your way home, or missing knee-deep puddles! I love the fact that as soon as you get home it is over- as soon as it is over, you get home. No changing in the gym, driving or getting the bus home. A walk is a walk, is a walk.

Going For Gold

Mo Farah
Jessica Ennis
Greg Rutherford

Super Saturday it was. Disregarding the other medals for the moment I have always been a massive fan of Athletics. I remember watching Daley Thompson, Seb Coe, Steve Ovett, Steve Cram, Fatima Whitbread, Carl Lewis, Colin Jackson, and on, and on, and on through the years.

Last night I shared it with a friend on the phone. We watched Jess finish the heptathlon- I had seen all of her events over the last two days and my Saturday evening was planned with the culmination of that at Mo Farah's 10,000 metres. Considering I find 100 metres quite an effort at the moment I had quite a salute for  him.
I loved the sound of the crowd and singing the National Anthem for Jess was amazing. I didn't sing, I just wanted to listen. Never heard anything like it. The sound was obviously contained much more in the stadium than it had been in The Mall at the Jubilee concert, so it was so uplifting.

In the rowing I think Helen glover's story hits me the strongest. Becoming an Olympic champion after only beginning to row four years ago helps me realise that my recovery is not out of reach. I can manage such a feat, it is within my grasp. I have the tools, the coaches, the information to hand, I just have to be strong in my heart, be determined and dedicated and the result will appear in good time.

Going for Gold! (to those who know, I keep thinking of the quiz show song! with Henry Kelly)

Treating Me

How do I treat myself to keep my spirits up?
I would usually have spent a lazy afternoon in the garden, cutting the grass or weeding- it is amazing what such a sense of achievement will do for the spirits.
Also a long countryside walk, with not a care in the world.
Spending a couple of hours tidying inside, or clearing out the shed. All this feels good and though it might exert a lot of energy, brings clean spirits and a smile to the face.
Three hours in the kitchen, creating a feast from the simplest ingredients.

None of this is accessible to me currently; wasn't really in the previous years, just when I had a slightly richer energy pot which I could delve into (only to crash a few days later!)
Now my treats are more monetary based.
Good food comes in the form of expensive ice cream, with cream and milk as the first ingredients on the information label rather than water and sugar!  Dark chocolate, a cube at a time, sugar-free frozen yoghurt. Also in-season vegetables with a fish pie or roasted chicken cooked by a friend, or at the local restaurant.
When we go out for a few items of food which weren't available in the supermarket delivery options (or were substituted or "not available") we usually extend the trip with a cuppa in one of many coffee shops.
I also spend time in clothes shops. Once every few months I need clothes and once every few months I fancy a clothes treat, so essentials are bought with time and stress-free managed shopping. I look online at a few shops' collections and know where I have to be left. The other half disappears for a while and I enjoy the process.
Treats are necessary for everyone. A hug, an I love you, a surprise parcel in the post and embracing-self gestures are just as important. We are just as important, whether it's a bar of chocolate for 99p, a new tea mug for £3.50 or a new, cosy, every day, cardigan for £45.

Freedom

"Freedom is instantaneous the moment we accept things as they are"

Karen Maezon Miller

For a long time my life was filled with the opinions of others, I was surrounded by pity, compassion, by mistrust and disbelief. Did people respect me? Was I a valid human, just lying here some days and doing nothing for myself? Was I right to act this way? If I followed some suggestions, just getting out of bed would mean I could climb a mountain. Others thought I was capable of almost nothing.
I've spent a long time discovering the truth. Accepting my truth and realising an acceptance is difficult, but in some ways it is the doorway to freedom, the doorway to recovery.
Acceptance is a struggle everyday, but when I find it, I encounter self-belief, confidence and a trust in the path I have chosen. I find freedom.

Audiobooks and Tranquility

My audio book collection

Has gone beyond belief. And I love it. I have just finished listening to The Secret Garden, by Frances Hodgson Burnett, which I discovered on the Librivox website, (link)
A friend and I have been meeting up on the phone three or four evenings a week and listening to the chapters together. Brilliant. And neither of us  has wanted the book to end. Next on the list is another Frances Hodgson Burnett book; A Little Princess.
Alone I am listening to two books, What Katy Did, by Susan Coolidge(link), a childhood favourite, and a real tear jerker, so much so, I'm not sure it's particularly good for me!
The second is The Help, by Kathryn Stockett, which was quite expensive to buy, but 18 hours of unabridged tale, by Oscar winning actors, must be worth it?
I am lapping this all up and it is a good reason to switch off the television with so much of it concentrated on the Olympics at the moment. I am in a different world and tidying the house at the same time.
Did I tell about this?

Tranquility

I am clearing out one of our rooms, previously more of a store room than a spare bedroom, it holds bulk buys of food!, all my wool and knitting, fabric, sewing machine, DIY tool box, gift wrap...you know the sort of thing! Well the household accounts which had made camp in there have also been partially sorted along with my wool and all of my husband's vinyl collection and a lot of bits and pieces which really need to have destiny's hand take the decision as to their future at a car boot sale!
The consequence of tidying this room is for me to have a yoga and meditation retreat room when I want it. I currently spend yoga time in the living room, which also contains the TV, radio, dining table, our only sofa etc.etc. so me getting some peace and quiet in an evening when my husband wants a comfortable place to read, play with his numerous radios (I call them gadgets!) is understood and accepted as necessary but not really convenient. By having a separate space for this the ambience of our evenings will be much smoother.
By doing this I am putting myself first and giving my husband a lot at the same time. During the summer (relying on the weather!) I escape into the world of the garden and have done yoga videos, thanks to the iPad, on the lawn. I know it won't be long before I want to escape the hustle and bustle of the ringing phone, the front door and general gadget-filled eye candy and the weather and seasons won't be on my side. So the room I am aiming for will give me some tranquility in a busy and sometimes sound-filled house. 

One of Those Days

I am sorry to appear so depressing from just the title but it is one of those days. it's not a jumping for joy day, just a muddle through kind of day. What Ineed is something to lift me, to give me support and motivation, where do I turn on a day like this?
I turn to my blog!
I went through a few posts for some inspiration and what did I find?
Amazing Results -link-
I must choose little things that have happened today to give me an amazing day.  My neighbour has moved. not good, but I will always have her, just up the road and I will also have a new family to connect with.

i have got dressed.
i have found the strength to release some tension in a short walk and a little yoga, including a really good grounding meditation.
i have had a good laugh as I explained to a friend over the phone how many things I could think of that were black and white, and red all over. the last one being a polar bear wearing a black top hat and dinner jacket, with chicken pox!
(Give yourself a laugh every day, I try to do it as a must every day, it is a great release and proof that you're still in touch with the real world.)
i have sent a birthday present off in such good time that it can go Royal Mail Second class. I will have no need to panic about it's arrival!
i have been able to watch my tension, watch my anxiety, that has built up from the last few days, as a casual observer. I know what it is when my neck and throat feels sore and tense and can observe it without worrying, just knowing that it is tension that will dissipate as the reasons calm and filter away over the next few days.
i have quite a few i haves to be grateful for and will focus on them to keep me going, with no need to even contemplate what have nots may be lurking underneath. I see what I am able to do in comparison to last year. I see how then I had to focus on what may be, and believe in what I hadn't seen, now I can focus on improving even more than I have done and improve to points which I still am reaching for without knowing. These goals can be reached and these i haves will encourage me even more.