Keeping busy, feeling the love and steroids.

Looking back over the past 40 days since the bombshell of all phone calls, I was just contemplating how life hasn’t really stood still, and there I was imagining how a workaholic like me was going to fill her time!

So here is a list of what’s happened so far and a few of the projects of mine.

Achievements and challenges to date:

16 day trips to London and 1 to A&E following my overdose!

Learning how to Blog – 34 posts, 6,768 views, 268 followers and 298 comments!

7 editors of national papers contacted last week in the hope of writing a magazine column and one positive feedback received, so fingers crossed.

Started new business venture ‘Village Secrets’ – house full of designer gear getting ready for big launch in March.

“Especially for You” scarf charity set up and 3 new scarf donations already received.
Contacted local radio station – Waiting to hear back to see if I can tell my story and put out appeal for scarf donations.

Met Ed Milliband and co

Had a hot date with Russell Brand and Jarvis Cocker

Just done a tincy bit of old job work on PR guide.

Lots of cleaned out cupboards (thanks to the steroids) and a new Ikea convalescing conservatory room set up to enable me to enjoy the view from my sickbed if required.

Party of the year organisation well on the way – the good news is we have the band and date confirmed now. The amazing CC Smugglers are very generously donating their time and musical skills for free in order to raise more money at my 50th Birthday charity music fest coming up in July.

http://www.ccsmugglers.co.uk/

And on the to do list:

Get on with writing the Meday book and others

Large painting for the local Indian restaurant. (I am excited about starting this)

Finishing the PR guide for work.

Designing and building a luxury ( but compact) spa bathroom upstairs with a jacuzzi bath to soak my weary bones! This one I really desire but will require a little more financial planning I think – looking into various sourcing options including eBay!

More party planning – good job there is a committee set up for this one.

Hmm will I ever have time to return to work?

None of the above would have been at all possible without the support and generosity of all the family, friends, colleagues, doctors, nurses, and people I didn’t even know who have contacted me via the blog. The LOVE out there is tangible and powerful each kind word and gesture is an attack on my cancerous cells and my numbers are dropping fast. I can feel it working and I know a cure is getting closer.

So by the end of all this it won’t be a funeral your attending but a party. I shall visit Buckingham Palace and sign a major book deal. I may even get to appear on Daybreak or go to Hollywood who knows?

You know this Cancer lark isn’t all so bad.

Please note however i am now coming off my high energy fix of steroids for a couple of weeks and this may cause in a severe lack of action!

I do hope not!

Dexamethasone and other steroids are useful in myeloma treatment because they can stop white blood cells from traveling to areas where cancerous myeloma cells are causing damage. This decreases the amount of swelling or inflammation in those areas and relieves associated pain and pressure. More importantly, in high doses, dexamethasone can actually kill myeloma cells.

So steroids are really powerful, with wide ranges of actions, producing dramatic effects from pain relief to mood elevation, and if it were not for the very serious side effects they would be used even more frequently. These are the drugs often abused by sports folk to enhance performance.

The problem is steroids also affect the brain, and high doses can make people feel happy, euphoric, hyped-up, with disturbance of sleep and even serious psychiatric illness such as mania, and psychosis (delusions, paranoia, loss of touch with reality).

Women can start looking like men: growing beards and going bald!

Oh dear now where is that foxy wig and shaver I feel an attack of losing touch with reality coming on!

Welcome once again into my Parallel Universe.

Please enjoy peace and calm today as I too will try to listen to these words of wisdom and slow down just a little!

X

The Good, the Bad and the Foxy ……..

It has been 5 weeks and 2 days since my telephone upgrade to Multiple Myeloma and so far,  disregarding the initial shock and resulting temporary grief,  the going I am very fortunate to report,  has been pretty good.  Multiple Myeloma is a very individual cancer so I am afraid that this can’t be said for everyone. My initial welcome into the C world came through a routine blood test but many others come following much pain from deteriorating bones or organ failure, as part of the bone marrow breaks away and enters places it shouldn’t. Some of these people are very young who haven’t been as lucky to experience the life I have already had, and who’s journey is  already much further down the road than mine. It really does seem to be quite a lottery and so very unfair and sad.
The  good for me, is that my myeloma, has been picked up early whilst I have been pretty symptom free.  I am on an excellent drug trial, being treated at the very best of hospitals, surrounded by the most amazing group of friends, family and colleagues and already responding well to treatment.
The bad bit it is , I cannot be in denial that currently there is no cure , it will lead to an earlier demise than I I would desire and it is very likely that my physical and therefore my mental health has some serious  bashing to take as I continue to feed pretty toxic substances into my body. The extraordinary large amounts of steroids are starting to take their toll. Yesterday I didn’t stop despite less than  3 hours sleep and here again I find myself wide awake after only 2!  Lack of sleep can be a form of torture so although I feel raring to go I am also starting to get a little concerned.
I am however some foxy lady……
Following a further visit to the Living Room, (my parallel universe oasis), I met with the beautiful wig lady, Nicola and wow she looked great in her turban and scarf. This brave lady is quite unnecessarily shaving off her own hair to raise money for the cancer service. How selfless is that! But she’s not the foxy lady that’s me., well that’s Colin’s new name for me.  In fact I am whoever Colin wants me to be with my new identities growing daily . Oh dear my professional mental health head is coming on, am I now developing a multi personality disorder?
 Anyway here are few of what could be new me’s and the final foxy lady look.
First we have the seductive blonde bombshell.
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Then the short sultry more serious work  look.
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A bit of a fiery red head
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The grey granny style ( I found this wig in the back of the cupboard and think it belonged to Colin’s grandma, or could it be his?
grey hair
And finally introducing the new foxy me.
IMG_0020There is no way those cancerous cells are going to want to stick around in this body it’s far too hot for them in here!
Just a quick update on the donate a scarf/hat idea. The Living Room were delighted and are most  happy to receive the kind donation of NEW scarves or knitted / crochet hats. I shall be presenting them in lovely gift bags together with a special message and positive vibes. The centre will will give these away to fellow hair losers and the receivers can offer a donation if they so wish,  but there is no obligation at all for this. I am calling it “Especially  for You” a gift from someone who cares and is sending you their love.
Yesterday I received my very first scarf from the lovely retired  vicar  in our village who popped round to say , just to let you know I’m  reading your blog here you go. So the ball got rolling.
I am still vey happy to receive any used scarves which I will sell at my Village Secret events and anywhere else I can,  with a 100% of the profits being passed on to the Living Room. So keep rummaging through those bottom drawers.
If you are purchasing a scarf to donate , the long and softer the better, bald heads get cold leaving them more open to catching something and needing more wrapping up. Please also feel free to write your own  message  if you like and I will pop it in the bags.
I have contacted our local radio station to see if I can put out a local appeal for donations through there but any ideas from you as to how I can get more would be very much appreciated
I promised myself that I would write a shorter blog this time round so it’s over and out from this foxy lady…. hmm fluffy chicken head,  as I am afraid this is what I am resorted to whilst lying here in bed.  Poor Colin what a fright as he turns over.  Good job foxy is  lying by my side on  the dressing room table ready to be whisked on!
Scores on the board:
Physical Health = 4
Mental Health = 5
0 = Great   10 = Call in my colleagues!

Donate a scarf and make a difference.

It doesn’t always take money to help others. If we take the time and a little bit of thought, we can come up with some great ways to make a difference.

Yesterday following my daily dose of beetle juice etc, I visited the amazing “Living Room” on the ground floor of the hospital. This is a unique oasis in my Parallel Universe, crewed by a team of highly skilled and compassionate staff and has provided me with the time and space I so needed before stepping back into the reality of the outside world again. Walking through the doors you are greeted by a friendly smile, a good old cup of tea and let me say again, (as I am sure I must have mentioned in previous posts) that most precious and invaluable resource of all…TIME.

Before I go on I must talk about TIME again because for me, there is nothing more precious you could give to yourself or anyone else in order to make a difference. I may be digressing a little from my original blog posting for the day but it really is so important. Yesterday, listening to Radio 4 on our in, what seemed like a very long car journey, (I blame the small sprinkle of snow), I heard about yet another parenting programme. This one had been brought over from Australia, to support vulnerable families. I forget what name that was attributed to it, and I am not disputing its value but it got me thinking about the time and cost it took to train the therapists in this latest idea (which I can honestly say in my humble opinion, was nothing new.) Am I just getting old, but however you dress it up, whatever name you care to give to the latest therapy or idea the basic gift you are giving is TIME. If you are going into to a families home and spending quality time listening to their stories and working with them and their resources, it really isn’t rocket science to know you are going to make a difference. However, I do fear that maybe I have just become so unconsciously competent I am not seeing it? I am also not disputing the years of training and skills myself and the excellent therapists in my team have developed to help and empower our patients, but I do believe that if a family or person is ready and willing to move forward it is the time you spend with them that counts. Recently there has been a big change around with further investment into health visiting. Health visiting resources were reduced, and I won’t get into the politics of by whom or why, but it resulted in less time for these skilled professionals to spend time with new mums, and the consequences for those especially experiencing depression and anxiety, soon became clear, as child protection cases rose and children’s and adults mental ill health increased. Now there is a re- investment as someone who must be really smart has thought this is what was needed after all HUH, Is it just me? I must put in a plug here now for a similar investment into school nursing which I could talk for hours on!

How much time do you give to yourself, your family ,friends? Oh dear this isn’t meant to be a lecture and I can honestly say that I have been better at preaching than practicing this in the past, but being faced head on with a big life changing event pulls you up by your boot strings.

Take 15 mins of time tonight to jot down how you divided up your time today. How much time did you spend working, doing house chores, listening to your partner and family and how much time was purely spent on yourself. I can guess which comes out top. Of course most of have to work be able to afford all the luxuries that surround us and that we are convinced are most necessary in order to make our lives easier and more bearable to cope with, but at what cost to ourselves and the people we really care about and love? Ask any one in my amazing team, what is the number one criteria is for working in Step2 and if they don’t come up with the answer of, first of all making sure they are feeling mentally and emotionally healthy, and looking after themselves, then they don’t deserve to be there. How productive can you be if you are stressed out or anxious yourself, especially in a mental health service?

That reminds me, I did start to write a book which I must dig out and finish, I think I called it the Me Day concept or some other such catchy title, but it was all about permission and diary in time in for oneself. Maybe I had better get back to it?

It is amazing how powerful words are. We apply meaning and feelings to so many, and yet, often we forget that the true purpose of words is to remove the ambiguity of meaning. We get mired in what is expected of us, rather than what is right. We are more worried about how our actions are viewed, than whether the outcomes are right. We fear how others view us so we stand silent or chose conflicting courses of action.

The word ‘ selfish’ has been provided with such negative connotations. It’s seen as a tremendous character flaw. To be fair, part of that reputation is earned. We’ve all known people that are truly selfish , that step on others in order to pursue their own needs. They often know very little of caring, happiness, giving, and love. Yet it’s possible that, as a society, we’ve gone too far to the other side, promoting the idea that if we want to truly be good people, we need to be as selfless as possible. We see this with caregiving, volunteer work, and raising a family – many people dedicate their entire lives to others. But there’s a problem – complete selflessness has a cost – and that cost is often to our own health, happiness, and lives.

Having good mental health as an individual leads to good mental health as a society so let me take you back to the LAMBSS from a previous post which illustrates the importance of having our emotion and mental health needs meet in balance. I believe the same could With so much emphasis on helping others, be said for the balance between being selfish and selfless.

You should always remember that you deserve as much health and happiness as anyone else – possibly more. This is because…You Are a Person too, and with so much emphasis on helping others this can get lost with detrimental effects on the people around you that you love most and are so wanting to be there for. As much as you try to help others, the only person whose happiness you can fix with any certainty is your own. When it comes to your life, no one is more important than yourself but this last point is often forgotten. YOU are important, YOU matter. And you especially matter to you – the one person in this world that knows you best of all. It is for that reason that being a little bit selfish may be a good thing.

It’s time to be a little bit selfish. It’s time to care about your own health and happiness, even if it’s slightly at the expense of someone you care about. Your happiness needs to be important to you. But perhaps the greatest reason to be a little selfish is because it makes you a better person for others as well.

OMG this was going to be a short post about how you could possibly help me to help other cancer sufferers, and now look what I’ve done! I do hope you are still with me.

As I started saying yesterday I visited the Living Room, I was feeling a little anxious about my thinning hair and thought I would just explore a few options and before I knew it I had been whisked away by this lovely lady in front of a mirror and presented with an array of scarves, hats and wigs and I must admit I starting getting a tad excited (it doesn’t take much!). One of the very glamorous wigs, I tried on, would even give Heather a run for her money, who I think has simply gorgeous hair. ( you know who you are!) .

The wigs aren’t cheap although you do get a £64.0O prescription towards it from the NHS which isn’t bad. Also, by the time you have bought these special soft caps and an array of scarves I expect it soon adds up.

That got me thinking, I know we are all often looking for ways to help others but I don’t think it always needs to be about giving large sums of money, and, to be frank, in this day it is in short supply for most of us. So how about donating a scarf or hat? Ideally it would be new but if not I could easily wash and bag up. We could include a little inspirational note or kind message to brighten up someones day. I could hand them in to the Living Room for them to give freely away or sell them at a small charge with 100% of profits going towards the Macmillan Cancer Support charity, perhaps enabling more wonderful people to be employed to support others at their time of need.

What do you think, is it a goer? Perhaps you could get it started at your workplace and colleagues in your company could be encouraged to become involved?

I’ve also found some great knitting and crochet patterns for those so inclined to do so, in front of the latest episode of Coronation Street or Mr Selfridge, ( I am so loving that programme at the moment).

Get your thinking caps on and please let me know your thoughts.

Will I ever be short of subject matter for my blog…somehow I don’t think so.

Forever grateful knowing you are there.

Deborah x

Here we go again …

Today is the beginning of cycle two, so here we go again backwards and forwards to London and my Parallel Universe, for the next four days. It really is like having a full time job. At least this time round I know what to expect as I go forward a little wiser if not quite a bit thinner on top. I must admit I’m not sure I am a great fan of hair loss. Cancer seems to be about losing things, losing taste, hair, identity, role. Maybe I could re- frame that ( I can feel another topic coming on), from losing to changing. Cognitive reframing consists of changing the way people see things and trying to find alternative ways of viewing ideas, events, situations, or a variety of other concepts. I do so love change and I am more than happy to embrace new opportunities and beginnings, it is however, quite useful to know where you are going,in order to point your ship in the right direction. Visualisation is a bit like steering your ship towards your goals, the trouble with Cancer is that it seems as if someone or thing has taken over at the helm. No worries, the good news today is I am back on the old Dexy Mid-night Runners. This should supply fuel to my rocket as I blast off with my new business venture.

I am banking on my fellow villagers, friends , family and colleagues supporting my latest entrepreneurial escapade as I am hoping it will provide an opportunity for me to raise a little spare cash (to put towards my party) and raise some money for Myeloma Research. Village Secrets is going to be the next girls night out combining fun and laughter with top end designer labels all washed down nicely with a chilled glass of Prosecco, now what is there not to like about that? The postman is delivering daily parcels which is so exciting, and I am preparing the goods for a spectacular launch There is a slight hiccup though, I seem to have ordered most of my new designer fashion delights in my size and, as I open them up and feel the soft cashmere or blink in the sparkle of the crystal on the Jimmy Choo shoes I think to myself I could just keep that one. As mentioned in yesterday’s blog I think I had better practice visualising actually making money rather than spending it!

Oh yes, there is another slight little consideration, I am hoping to launch this exciting event at my sisters house and she is still busy rescuing donkeys in Africa blissfully unaware of my intentions! I am sure she will be up for it and to tell the truth I shall just be pleased for her safe return on Wednesday. Having spoken to her briefly on the phone and hearing of her escapades about rushing into burning buildings, sleeping on a plank of wood and cold showers with mouse droppings I am sure a good wash and make over will be a desirable relief.

A few random questions for you, honesty and feedback much appreciated.

1) How helpful was the information about visualisation?!

2) Would you like to know more about re-framing?

3) What do you think about my new business venture Village Secrets ?

As you start a new week just consider this:

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Happy Monday

The map is not the territory

Before sharing tips and ideas on the power of visualization I think it may be useful to explore together a bit about maps, oh I do hope I haven’t lost you already! This is not meant to be a geography lesson but you just wouldn’t believe how life changing knowing a little bit more about internal maps can actually be. I am afraid, however, that unless I start writing long essays for which I am sure none of you would be particularly grateful or want to read over your morning coffee, I won’t be doing this subject justice so I therefore recommend that those of you who do want to take it further, investigate more about Neuro- Linquistic Prorogramming ( NLP). The best way to do this is to find a local practice group or training programming but here is a wealth of information available on the internet.

NLP is a bit like an ‘owners manual’ for your brain! It is a tool to understand how the language of our mind creates and runs the patterns we have in life. It is built up on a number of pre-suppositions or beliefs and “the map is not the territory” is one of them.

NLP doesn’t hold that these beliefs are ‘ultimately’ true, but we pre-suppose that they are. In NLP, whether a belief is ultimately true or not is not as important as whether or not it’s useful.

As human beings, we can never really know reality. We can only know our perceptions of reality. We experience and respond to the world around us primarily through our sensory representational systems. It is our ‘neuro-linguistic’ maps of reality that determine how we behave and that gives those behaviours meaning, not reality itself. It is generally not reality that limits us or empowers us, but rather our map of reality.

There are a couple of problems with this. The first, it’s easy to forget that what we believe to be reality is actually only our representation, or map, of it. The second is that everyone has a different map, or perception of reality.

Everyone sees the world differently. We all have our own map of it depending on our upbringing, our attitudes, beliefs, prejudices and individual perceptions at any given time. Everything we see and hear is adjusted to fit these experiences.

So I may see the world quite differently from many of you. This is important to bear in mind when sharing tips and strategies if they are to be of any use to you. I have a very visual mind, whereas Colin and perhaps yourselves may have an auditory (hearing) or kinaesthetic (feeling) thinking style or preference, so please do excuse me if my language is very visually focused.

After all that here goes for some tips on visualisation

1) Put some time aside, this is important as visualisation can dramatically change your future and you want to get it right, so don’t hurry it. Creative visualisation is best used when you are truly relaxed and feeling positive. A good idea is to take a nice long hot bath, especially at night, then put on some relaxing music, and meditate for a few minutes.

2) Start to visualize what you want. Close your eyes and visualize a mental movie of what you desire. For many people it may be hard to visualize to begin with so have a go at trying this first:

Let’s visualise going to the beach. Start off with the feelings , feel the warmness of the beach and the light breeze from the sea. Then imagine hearing, hear the seagulls, the kids laughing, the people talking, the waves. Next see, notice all the people enjoying the beach, see people sunbathing , swimming, laughing, making sandcastles, see the sun and the blue sky and the waves, and people surfing. Now visualize yourself, with all these senses, walking to the beach, sitting down on the golden sand and doing what ever you would do at the beach for as long as you like. Enjoy being there soaking up all the different sounds, smells , tastes, pictures and feelings. You have transported yourself in time to a place you desire and enjoy, without moving from your armchair and at no cost. How amazing is that!

3) Practice this daily, maybe visualising being in different places to start with, remembering to notice all the sensations around you.

4) Now once you have got good at doing this you need to work out what it is you want in your life. Have good clear goals and outcomes and put your new found visualization skills into practice.

The secret is knowing what you really do want so that you can focus your and the external worlds attention on it. But that’s another whole challenge all together so you had better get your thinking caps on.

I think it may be useful to share some examples of how visualisation has worked in practice for me.

The Dream Job.

Personally , this involved drawing out on large sheets of flip charts all the things I desired in my dream job. I wanted to share my mental health knowledge and training, to create resources, speak at conferences, reduce stigma surrounding mental ill health and improve communication skills. I knew there would be some challenges as I don’t have the academic qualifications that some of my doctorate fellows have but I was able to visualise my way around these. I started to see a path forward. I visualised achieving awards, creating a whole service and really making a difference. All of this is exactly what I achieved. I haven’t always been a confident person, and there have been times when I started to doubt myself but I knew that if I didn’t believe it to be possible no one else would either.

A Dream Home.

Perhaps I needed to try harder at visualising making money but I feel that my desire for financial wealth has not been strong enough to achieve this. Both Colin and I did however dream of the perfect home in the countryside. A little detected house surrounded by fields with barns to host our VW campervan and collections of shabby chic furniture, art easels and craft projects. How about in the village just down the round from my dear sister so she should could ride over for breakfast surely this would be too good to be true?
So here we now are in that exact home. Was it just chance that led us to notice the ‘To Let’ sign that had just been posted up on the very day we were passing on the way back from a delightful team event delivered by my sister. Was it pure chance that in order to rent this dream home you needed to own a business (the BrainBox) ?

I could go on with more examples but I fear this blog is much longer than first anticipated and I don’t want to take up any more of your valuable time.

Although these appear as dreams they are grounded in reality which does also require hard work, grit and determination, but without the initial visualisation one might be blind to the opportunities around.

Happy Sunday and very happy visualising.

X

Space dust and the power of visualisation.

Yesterday was pretty explosive.

Firstly a very kind friend thoughtfully sent me 2 packets of space dust. Now, when you can’t taste anything, having popping sensations exploding on your tongue is quite a treat, as crazy as it may sound.

Secondly, I received some pretty mind blowing explosive results. My space guide rang with the very welcome news that my para proteins had gone down from 53 to ……… 11. That was much more than even I had dared to hope for so it looks like I am on the right trajectory for returning to planet earth.

This brings me to the very serious matter of visualisation and the power that I truly believe it brings.

Visualization has helped millions of people achieve goals. It can be the most powerful tool for achievement you have ever used, giving you the power to identify and obliterate roadblocks to progress. It has the ability to make your path to success so real that you can almost feel it, hear it, smell it, as well as see it in the mind’s eye.

I have personally used the power of visualisation to create and realise my dream job, perfect country home and other lifetime desires. Now I am putting it to the test in reducing my numbers and fighting off my myeloma invaders.

It is a well-known fact that we stimulate the same brain regions when we visualise something and when we actually do it.

Basically, your sub-conscious mind does not know the difference between something that is real and something that is not, so, when your mind’s eye percieves a very vivid mental picture, your mind accepts it as reality.

Your body responds to the way you think, feel and act. This is often called the mind/body connection. Just for a moment think of a juicy orange. Already you may notice saliva producing in your mouth., an immediate physiological response to a thought. How powerful is that!

Using visualisation with many clients over the years I have been able to witness for myself some amazing results. I just love Henry Fords quote “Whether you think you can, or you think you can’t–you’re right. Honestly it’s true you just need to believe in it, yourself and the power of the universe. But please don’t think it’s all hokey pokey, it is a little bit more scientific than that.

A very simple example might be that if the doctors and researchers didn’t think it would be possible to find a cure for cancer would they be focusing their attention on it? Probably not, but they do believe it, they visualise a world without cancer and together their brains will bring forth solutions and answers. I just have to visualise them coming up with the answers pretty quickly.

When you believe something, even marginally, you begin to do a thousand little things differently. You talk to people you’d normally avoid, you ask questions you’d have been too shy to ask, you dress a little better, you interact with more confidence. You invest time, and energy in yourself and others without really noticing how differently you are presenting yourself to the world. To those who come in contact with you, you are different and because of this the external world around you responds and changes.

None of this is new. Writing over 2,000 years ago, Aristotle described the process as “First, have a definite, clear, practical ideal; a goal, an objective. Second, have the necessary means to achieve your ends: wisdom, money, materials, and methods. Third, adjust all your means to that end.”

Before we can believe in a goal, we first must have an idea of what it looks like. To paraphrase the old adage: we must see it before we can believe it.

This is where visualization comes in, it is simply a technique for creating a mental image of a future event. When we visualize our desired outcome, we begin to “see” the possibility of achieving it.

Visualization should not be confused with the “think it and you will be it” advice peddled by some popular self-help gurus. It is not a gimmick, nor does it involve simply dreaming or hoping for a better future. Rather, visualization is a well-developed method of performance improvement supported by substantial scientific evidence and used by successful people across a range of disciplines.

Take athletes, for example. Studies show that visualization increases athletic performance by improving motivation, coordination and concentration. It also aids in relaxation and helps reduce fear and anxiety.

According to research, using brain imagery, visualization works because neurons in our brains, those electrically excitable cells that transmit information, interpret imagery as equivalent to a real-life action. When we visualize an act, the brain generates an impulse that tells our neurons to “perform” the movement. This creates a new neural pathway — clusters of cells in our brain that work together to create memories or learned behaviors — that primes our body to act in a way consistent to what we imagined. All of this occurs without actually performing the physical activity, yet it achieves a similar result.

So visualisation is pretty powerful stuff.

The next blog could provide me with the opportunity to share some tips and ideas of how to make it work for you if I have any takers out there what do you think?

Fancy giving it a go?