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.