I can't write about colonialism or the Commonwealth

I’ve been trying, without success, for the last month to write a blog post on the curse of colonialism and the abomination that is the Commonwealth.

As I explore my thoughts and organise them into something coherent, I become paralysed by the scale of the destruction that the UK has wreaked and continues to wreak with its imperial history.

Britain has truly changed the world, in a way that world is worse off.

From language to cultural identity, to the idea of sovereignty – colonialism shifted it all. From the idea of what is beautiful, to who is intelligent – Britain orchestrated a deliberate collective mind-fuck through time and space bending and breaking once powerful cultures to its shallow, defunct own.

So, I can’t write about this right now, partly because of the scale and mostly because I am so incredibly sad about it.

Perhaps one day.

I finally get Trump

From the moment Donald Trump threw his hat into the US presidential campaign back in June 2015 until his controversial win in November 2016, I’ve experienced a range of emotions from hilarity, incredulity, fear, disappointment and now – lingering sadness and disappointment.

Why do I care, why do any of us – non-Americans – care what happens in American politics. Are we obsessed and chattering about Ugandan elections – such as they are – or Indonesia? Or any other country for that matter?

We care because America has been the military, cultural, economic – and therefore – global political empire of the last 70 years. “Has been” is the key part here – this empire is dying – there is no doubt about that. Every empire ends, regardless of how long, how great or how wide its sphere of influence.

I – like the rest – of the world expected a certain type of global leadership from the President of the United States. In part, this expectation has been set by history. With a few exceptions (ahem, George ‘Dubya’ Bush), American presidents and their administrations have maintained the global status quo – dealing respectfully with their allies and being the leader that was needed.

Not anymore. Trump is not maintaining the status quo, not in any sphere of his administration. He has asset stripping CEOs in his cabinet, Russian-buddying, obviously dodgy-as-fuck campaign managers. His administration pursues policies that devalue life, hurt innocent people, create divisions and actively demonstrates aggression to everyone.

Personally, he seems to have the morals of a brothel keeper, no sense of decorum, very little social skill, is unwilling to listen, extremely egotistical and seems to have very little goodness. He even fails at the very basic requirement of the office – being there as a voice of reason, measure and comfort for his country when it experiences tragedy.

I finally get him. He is a terrible United States President.
He is also the best one to catalyse the demise of this dying empire.

His latest ( 5/Dec/2017) –  bucking of convention is to announce that the US administration is recognising Jerusalem as the capital of Israel. This is causing huge anger and response from pretty much every corner of the political space.

Jerusalem is central to three of the worlds big religions –  Judaism, Christianity and Islam. It’s dumb and shouldn’t matter who controls it politically, but the Muslim world wants a piece of it under Muslim control through the stalled peace process between the Israelis and the Palestinians. The hitherto best chance for peace between those two is a two state solution with shared control i.e. division, of Jerusalem. Israelis and their obsession with ‘the chosen people and special relationship with God’  narrative claim an ‘undivided Jerusalem is the eternal capital of the Jewish people’.

But back to Trump – he is a simple man. Some may even say, simple minded. He is a pussy grabbing, McDonald’s munching, unashamed capitalist and his administration is driven – perhaps more than any other previous one – by his own personal narrow world view. This world-view, like most people is informed by those we hang around with, what we hear and are exposed to daily. By our relationships.

He is very much pro-Israel. Why wouldn’t he be? the world of finance and big business in the US and especially in New York is awash with Jewish and pro-Israeli relationships. Truth be told, so it has always been. The Clintons, Obama, Bush etc have all had deeper relationships – personal and professionally with pro-Israeli people compared to pro-peace/pro-Palestinian people.

So – Trump says ‘Jerusalem is Israel’s capital’. This is stating the obvious. The US will recognise Jerusalem as Israel’s capital – so what? Trump spouting it doesn’t magically make it so.

Jerusalem is already Israel’s capital.
The Israelis treat it as such and no amount of condemnation or support is going to change that. Will other countries follow suit – I strongly doubt it – no Arab/Muslim country that has diplomatic ties with Israel will be moving their embassies to Jerusalem. The Germans might, but they would anyway – because of the perpetual national guilt they carry for the Holocaust. Will the UK? Probably not – they are facing Brexit and looking to increase trade with many Muslim countries to mitigate that disaster – now is hardly the time to court more controversy.

China and India have so far been very diplomatic about it all but have their own global ambitions. Russia picks its fights very carefully and this is not one it is interested in and besides, for countries like China, Russia and India, being led on this by the US is not a reasonable part of their big global ambitions, it would show subservience, not independence.

What happens when any nation strays too far beyond the range of acceptable behaviour? Unfailingly, they get sidelined. The UK and Spain are prime examples, post Ottoman Turkey is another. Their relevance as global powers are questioned, their standing in the family of nations diminishes whether they choose to recognise it.

From domestic gun control to global climate change, from tackling wealth inequality in the US to North Korea, Iran and Cuba – Trump has shown he is willing to do the unreasonable thing. He has nearly done enough for the rest of the world’s nations to sideline him and his country, nearly enough to seal the irrelevance of their leadership.

So, I get it. Trump is the driver of the United States’ unrelenting , full-speed trajectory to global mediocrity. That is a better and more achievable definition of Making America Great Again. By ‘great’ meaning back to living in its own bubble and helping the world by not being able to fuck it up. I, for one, welcome it.

"Negotiating sex is rather difficult"

Even if you don’t read this post, go watch this:

http://www.bbc.com/news/av/stories-42171536/world-hacks-the-secret-ring-helping-women-protect-themselves-from-hiv

There is so much in the western media of sexual harassment and assault, so I want to also draw attention to this –

I saw a recent BBC video about a secret ring that some women in Malawi are testing to protect themselves against HIV from partners who they cannot ‘negotiate sex’ with OR even negotiate them putting on a condom.

This is shocking!

Men who practice unprotected sex with many other women and then come back to their wives – who undoubtedly know that their husbands are sleeping with other women.

Yet the wives cannot say ‘No’ or even require that their husbands wear protection!

If we are angry that Harvey Weinstein manipulated and harassed actresses to have sex with him or that a UK MP put his hand on a women’s knee or Louis CK masturbated in front of women without their permission – then what should we feel about women who are facing a real risk of devastating disease and cannot say ‘No’ to unsafe sex?

If this bothers you, please do something.

Watch the video, write about it, donate to something, share with others and bring some attention to this.

Please just don’t do nothing. Apathy destroys lives.

Thank you.

Day 1: I am Rohingya #51Days

Today as part of my #51days act of solidarity, I shall change my twitter profile to

‘I am Rohingya”

The Rohingya are an ethnic group that live in Myanmar – formerly Burma – they are mostly Muslims in a country that is predominantly Buddhist.

For a toxic mix of reasons – ranging from religious difference, land grab, ethnic hatred to simply being  – the Rohingya have been persecuted almost out of existence. First by successive military juntas and now from a democratically elected government itself led by a former political prisoner and Nobel laureate Aung San Suu Kyi.

The Rohingya seem to be the favorite whipping boy of everyone with power in Myanmar and the world seems mostly deaf and mute to their persecution.

Myanmar is signatory to multiple human right treaties and conventions  – pretty much all the ones that matter. It has obligations to protect the rights of indigenous people, women, children, the disabled and pretty much everyone in its jurisdiction.

The Rohingya do not deserve to be murdered, their women raped, their leaders tortured and disappeared. No one does. If they have committed a crime – charge and apply the law against them. To the best of my knowledge, their only crime, as a group, is to exist.

The violence and discrimination is both by agents of the Myanmar start under the pretense of security and by private militias with the tacit and often, active, support of the State.

Today, I stand with the Rohingya.

Please learn more about this here: http://www.rohingya.org/portal/

 


Photo by AK Rockefeller

51 days of solidarity and advocacy.

There are 51 days until Christmas 2016.

For each of those days,I will change my name on Twitter to reflect a cause I want to support and bring some attention in a small way.

Why?

There is so much wrong with the world. There is so much that is right too.
We are each nodes in a big network of humanity and when we refuse to pass on the right or suppress the wrong, we degrade the network. It stops working and it lets the mundane overshadow the truly meaningful.

But I’m only a node and over the next 51 days, I’m going to be a little better at being that.

How?

I’m pretty active on Twitter. I blog about things that interest me, I jump into conversations, I rant. My tweets are shared, liked and retweeted that creates reach beyond the 3000+ people that follow me. A change in name  – especially one that provokes curiosity spreads my message. It might just provoke the right action from the right person.

What can I do to help?

Retweet me, like my tweets.
Tweet about this action – if you support the same cause or simply want to support my activism.
Share this post.
Share the messages that have the hashtag #51days – they will be about the issue of the day.
Join me – if you’re on Twitter, change your twitter name in solidarity.

Or simply just share about this stupid thing Mike is doing now.

It all helps.

Just. Don’t. Do. Nothing.

 


Photo by OnTask


Photo by jared

Passion, care and the Agile Manifesto is really all you need.

As I sat with a professional services team at my client, launching into my tried and tested description of what agility means and how to do it sustainably, the last 11 years of my life flashed in front of me and I saw something that I hadn’t realised before. It both scare and energised me.

My typical approach to this particular exercise is to begin by introducing my audience to the Agile Manifesto – the spark of the movement. I remember to use that word – ‘movement’ because I truly believe this is what those who truly do agile software development are part of.

Then I pretty quickly move on to processes (or process frameworks) – the ‘how’. I do this partly because I assume that is what folks want to hear – “enough of this happy clappy, pie-in-the-sky bollocks. Show us the meetings, the artefacts and stuff we can put on our CVs”.

I also do it because I hadn’t really stopped long enough to consume the manifesto, to meditate deeply on it. And that might be because I wasn’t ready.

Well now I am.

As I wrote the 4 value statements on the whiteboard, time stopped. For context, here is the Manifesto for Agile Software Development:

Manifesto for Agile Software Development

We are uncovering better ways of developing
software by doing it and helping others do it.
Through this work we have come to value:

Individuals and interactions over processes and tools
Working software over comprehensive documentation
Customer collaboration over contract negotiation
Responding to change over following a plan

That is, while there is value in the items on
the right, we value the items on the left more.

What actually triggered this epiphany was a simple question:

What would it take to fully understand each of those value statements deeply and live them deliberately – every day and in every facet of your team or organisation?

If you imagine a journey to increased agility was a 12 step program where you couldn’t proceed to the next step without satisfactorily completing  the preceding step,  then seeking to seriously answer that question would be steps 1 – 11 and mostly like a ‘formal’ process or framework like Scrum or SAFe would not even feature.

Don’t be fooled – this stuff is complex. Take an even modest attempt at going a little deeper into the first value statement – ‘ Individuals and interactions over processes and tools’ – :

  • Who are the individuals, what are the interactions? How do we know they are the right ones?
  • What personal and professional skills and competencies does each individual need in order to participate meaningfully in these interactions? How do they acquire and develop them?
  • What conditions sustain meaningfully interactions, how we create and maintain them?
  • How do we continuously sense that the interactions are not yielding what they are intended to yield? What do we do when that happens?

This is not a remotely exhaustive list, but they are considerable questions. In my mind, these are not ask-once-and-forget questions, they are to be asked and answered regularly.

There is even an earlier starting point.  Do we have the skills to ask the right questions?
Tools like powerful questions, clean language might be useful places to look to gain those skills. I have met far more people who suck at asking the most effective questions than not.

Now I’m not saying don’t do Scrum or use Kanban or XP or whatever the flavour of the month is. But it is very possible that you might do those and not enjoy the agility you seek, worse still you may get lost in process and without a solid understanding of these fundamental first principles you will struggle to regain direction.

I am saying go deeper into these 4 statements. Fight the urge to go into processes and the tickboxes. Do not simply ask questions and pat yourselves on the back that you answered them – actually execute on the answers. Make those answers make a difference to your work and your life.

And oh, if any of your answers is ‘do process X’ , then please consider getting one of these:

http://i.giphy.com/xT0BKGkoBW46ip9OvK.gif

I am tired.

I’m tired, very very tired of trying to build startups.

So very tired of starting from scratch with every idea. Of the hustling and the hacking. 

I’m tired of hearing people saying ‘No’ and the ‘Oh it’s a great idea but..’.

I’m tired of the apathy – of sending 10,000 emails and having only 10% of recipients read them.

Most of all, I’m tired of the conflict in my head. There are so many ideas and the flow is not stopping anytime soon. I want a way to stop having them. The spirit is like a puppy eagerly prodding me to play but the mind and body is knackered.

These ideas, these pursuits, these startups – however exciting they are and however much I think they are useful to the world, they are stealing my time and that is the only thing I cannot replace.

Sure, I take untold pleasure in each new idea – I totally dance with it and am consumed by it. I won’t have it any other way. That itself takes a toll – it’s exhausting. Conjuring up ways this idea could rock and then building it, that is so so tiring!

I want to give up and take a job in a smallish to medium sized human centered company – or at least one where they genuinely pretend to appreciate my being there and pay me enough money to stay.

I’m tired of making decisions. Tired of being the one that worries how the bills will be paid. Tired of living on a shoestring whilst bootstrapping ideas that rock but don’t sell.

I’m tired of feeling alone in this. Tired of confronting my inadequacies everyday, of doing things that scare me. Of being rubbish at a great many things. I’m tired of learning every damn day. Of things being hard.

I hire people and they are wonderful – but we shoulder different burdens. They seem able to leave the work behind when they log off. They are committed to get their bits done and they care that the idea works – I suspect more because we get on well – but yet – I feel alone. They, understandably are concerned about each part they are responsible for, I am accountable for the whole being more than the sum of the parts.

I’m tired of context switching between the things I have to do to fund the things I love doing. The first is enjoyable and somewhat fulfilling and is entirely about the success of other people. The other is an unparalleled rush – a rollercoaster of everything.

I’m so very tired. Do I rest or do I give up? I don’t really know. I hope it passes soon.

 

I'm delighted by…Shade Station

Designer_Sunglasses___Watches_-_Diesel__Ray_Ban__DKNY__Oakley__D___G____More

What: Prescription glasses, Prescription Sunglasses online
When: 28th June 2016
Address/Website: http://shadestation.co.uk
5 things that delighted me:

  1. Huge choice of prescription specs – I wanted wraparounds
  2. Really affordable. Usually 2 pairs cost me > £250. These cost me £145
  3. Next day delivery of prescription sunglasses – are you kidding me!!!
  4. Awesome communication – the lab called to tell me one pair failed QA tests, they were fixing and sending the next day. Live chat was fast, friendly and answered my query/solved my problem in record time.
  5. All the above + sweets in box + £7.15 discount on next order + £50 Virgin wine 

 


This is a new series of my personal recommendations for products and services that I encounter.
Anything that I write about here has delighted me – not simply a good service or product.

I have 4 simple criteria for a product or service to delight me:
– Suitable for purpose: it must do what I want it to do
– A pleasant experience: my experience of the website, the order, delivery – everything must me smile.
– it’s OK for things to go wrong, but if they do, the process of getting it resolved must make me smile, feel relieved and make me wanna shout with joy.
– Price is price – it doesn’t have to be the cheapest on the market, but if all the above are met and it is great value too – bonus!

Note: I have not taken any payment from any product or service for writing this. And I never will.

My Camino is over for now. I walked 255 km for ME/CFS

In January 2016, I committed to take my dog – Maya – on a really long walk and I committed to use the walk to raise money and awareness for more investment into the medical conditions: Myalgic Encephalitis, Chronic Fatigue Syndrome and FibroMyalgia. My best friend and my daughter both suffer from forms of these conditions and they are poorly understood, poorly diagnosed and treated. There are no cures currently for these conditions.

In May 2016, I started and completed my 255km walk in Northern Spain – from San Sebastian in the Basque Country to Santander in Cantabria. This is part of the ancient pilgrim route to Santiago de Compostela – the fabled resting place of Saint James. Each day of my walk was dedicated to the story of a sufferer of these conditions.

Big Lessons from My Camino

Whether you walk it alone, or you trek with a group – a great walk helps you connect with people, nature and yourself. And in this connection there is so much learning. I don’t know whether it is science or spiritual or simply what happens when you give yourself the time and space to be heard.

Going into this walk, I had a bunch of things to figure out  – primarily I wanted time and space to reconnect with myself.  I did reconnect with myself – reaffirming what makes me, me and what my focus in life is, who and what are important and more importantly, who and what aren’t. Unexpectedly I also reconnected with parts of humanity that I had silently drifted from and didn’t realise I needed to rediscover and I’m so glad I did.

I learned so many things about myself and people and life on this walk and wrestled with demons that I hadn’t previously made time to resolve. They say that in the woods, no one can hear you scream. There are lots of woods in the North of Spain and I had many opportunities to scream at my demons and them at me.

Then there are the lessons that necessity teaches.

Anyhow – here are some of the things I learned on my walk:

Maya is a Truly Amazing Dog

2016-05-03 15.59.06I consider myself to be a very practical dog owner. There is a power relationship in play between man and dog and whilst I know all the blah blah about trust and loyalty, I hadn’t fully  experienced it with any other dog I’ve had, until this walk. I know that Maya considers me her pack leader – who will ultimate protect her from any threat and provide for her.

As far as I know, Maya can’t read a map nor calculate the distance between places on a route. She doesn’t know to plan for a 30km walk with multiple ascents and descents.

This beautiful dog walked with me every step of the way and stayed by my side in the rain and through the mud. Through forests and towns and hard tarmac roads that must have been tough on her paws. She braved her fears – unfriendly dogs that barked terrifyingly at her approach – and she spread her joy by making friends with every person we met.

Whether it was 10km or 30, Maya just walked with me – trusting that I knew where we were going and seeking nothing but having a pine cone thrown in play every now and then.

Vaseline is magic

2016-06-03 13.18.54“Here’s some vaseline – put it anywhere that starts to catch or heat up or rub” – the wisest words a newbie long distance walker will ever hear. My friend Amancio said these to me when we first met and kindly offered me his own tube as a gift.

Long walks put huge strain on your feet, things rub, skin gets bruised and blisters form. All these on their own are bad enough – but when you have to walk every day, suddenly things get rather more complicated. In comes Vaseline.

Every morning of my walk started with a smattering of vaseline on my clean feet – not too much, just enough to rub into my feet and create a protective shield. This shield almost entirely eliminates the friction that causes blisters.

Then when the straps of my 9.5kg backpack started rubbing into my shoulder and my neck – Vaseline again to the rescue.

Fix problems that affect your ability to make progress as soon as they occur

Stop and fix problems when they occur. Lesson learned.

Stop and fix problems when they occur. Lesson learned.

On a walk and in life, there are things you must keep doing to move forward. In life, it seems like there are a multitude of things you need to maintain. You have to look after your health, eat well and exercise for example. Some say you have to keep learning, others say you need to keep an active social life.

On a walk, life is much simpler. The only thing you need to do to make progress is maintain your ability to put one foot in front of the other and walk. I learned that I needed to address any problem that affected that ability as soon as I felt them.

For example – I had new walking boots and the inevitable pains of breaking them in all started to emerge from about the second day of the walk. First I got shooting pains in the sole of my left foot – but I ignored them, put a brave face on and kept walking. Then they got worse, the pain spread to the back of my left knee.

Had I stopped and stretched, applied some balm – as I did on subsequent days (with fewer painful consequences) – I’m sure those first 2-3 days would have been a less injury prone experience.

The cost of stopping and fixing the problem is much lower than the price of being laid out for a day or two.

So now I’m working on understanding what essential things I need in order to move forward joyfully in life and I’m learning to spot problems that will affect them.

I really don’t need very much to be happy

2016-05-03 15.59.00Something about living out of a backpack for 10 days is exceptionally liberating. I packed 4 dry wick tech shirts – they are extremely light and quick drying- 2 trousers that could convert to shorts and a few other items of clothing. But I realised actually I could have packed even half of those items and still been fine.

I was without my laptop, a TV – though I had my phone, I used it almost entirely for taking pictures and keeping in touch with my family via Whatsapp.

Aside from the physical things I didn’t have –  I also had much less responsibility. Basically it was to find food for myself and Maya.

Yet the walk was truly one of the happiest 2 weeks of my life.  I think as material things go – I’ve never been a hankerer for things – so not much improvement there. This walk has taught me to think about the responsibilities that I take on that I might not need to be happy, it also taught me that there are some things that I had closed myself to – that I now recognise make me feel happy – which I really need to try and get more of.

I never tend to do things because I seek gratitude in return or even an acknowledgement by anyone who might benefit from my doing them. I do things mostly because I want to do them or I see they need to be done. Yet I was completely unprepared for the effect of reading some of the short messages of gratitude and appreciation on Facebook and on my JustGiving page. Hundreds of messages of gratitude for walking for others. I blubbed almost every time I read.

Everyone has their own camino

Each person has their own camino

Each person has their own camino

I was joined at the start of my camino by my friends Helen and Horacio. We had such a wonderful time for the 3 days we were together. We laughed so hard, there were never any awkward silences.  There were times we walked in step and other times when each walked their own pace. It was easy.

Yet as much as we enjoyed walking the same route, we each were walking our own camino -both as a physical journey through each person’s limits and challenges and through each person’s mental baggage they needed to work through.

And this was the same for each person I met on the walk. Appreciating that we are not all walking for the same reasons or to the same schedule almost entirely eliminates judgement. There is no right way to walk nor a right way to start or a good time to complete a stage in.

As I apply this learning to life – I feel totally filled with empathy for the journey each person is on – even if they don’t realise they are on a distinct one from everyone else.

The Kindness of Strangers is Powerful Stuff

'Be a rainbow in someone's cloud' - Maya Angelou

‘Be a rainbow in someone’s cloud’ – Maya Angelou

There were a few times on this walk when I needed help. Especially when things got a little complicated with accommodation with Maya or finding food for her on days when things were closed or in places where nothing was open.

The warmth and the kindness of people who didn’t know me from Adam – people who could easily have said ‘No’ instead of ‘Yes’ – simply blows me away.

It turns out that over the last few years I have not needed the kindness of strangers – most of my endeavours have been very much in my control. Yet on this camino, I put myself in situations where I needed that help and there it was.

From Kepa who happily let Maya sleep in his courtyard – to Manolo in Pobeña who offered to drive me to the next town to buy dog food – I’m convinced these are the people who neutralise all the cynicism in the world by their small acts of random kindness.

Never sleep with a big dog in a small tent

2016-05-13 22.22.56However much you love your dog – and I love mine a whole lot (and a whole lot more after this Camino), there are lines to be drawn.

One such line is never again sharing a small tent with Maya. Aside from the paws digging into my side and the tail tickling my nose, the most unbearable thing were the farts.

Maya is lethal with her farts- though I think I gave as good as I got – and this is made more toxic because of the size of the tent. So if there is one piece of advice I can share – that I learned the hard way – it is never to share your small tent with a big dog.

Camino Photos

Now, remember I went to walk. But I did manage to take some pictures too. I’ll add more of my photos as well as some from Helen, Horacio and James when they share them.

This slideshow requires JavaScript.

Huge Thanks

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I’m deeply grateful to so many people for the support and concern during this camino. Huge thanks to my wife – Katharine – for making it possible for me to even have the time to be away from home for 12 days.

Thanks to these 58 amazing people who backed my JustGiving campaign. We exceeded the target and this money will make a difference to the lives of so many people suffering with ME/CFS/FM. We need research into these conditions and whilst £3000 may not sound like a lot for research, it will fund the activism and advocacy that is critical to agitate for more investment.

The Next Steps

As my friend and Camino consultant – Amancio – says “You’re hooked on the Camino”. I am pretty hooked now on the idea of the camino as a quest, a time to reconnect and as a physical and mental challenge. So now what?

Well, in September/October, Maya and I will  be walking for 25 days to complete the remainder of the Camino del Norte from Santander to Santiago. About 600 km. It will be a more informed adventure and, for sure,  a lighter packed one.

I’ll post more about it and I know now that I will continue to raise money and awareness for ME/CFS/FM and also to raise awareness and funds for MOAS – the Migrant Offshore Aid Station –  who are doing an incredible job saving lives in the Mediterranean Sea by rescuing migrants from capsized boats.

If you would like to join me for part of this longer walk – stay tuned to my blog for news of the plan and the schedule.

Thanks for reading this far 🙂

 

I walked 15 km today for Julia and Mandie

mike-7
Today is my last day of the Camino long walk.
For Julia and Mandie Chapman.
“I never understood M.E. until I had it. It’s like being sick in reverse.. the usual things to do to feel better don’t work.”
This is Julia’s story:
When were you first diagnosed with ME/CFS/Fibromyalgia? 
2009
What was your life like before you first fell ill with ME/CFS/FM? 
Very busy. I was an active person.. also a lot of family stress to deal with.
What do you miss the most since having ME/CFS/FM 
Walking, studying and working my dream job that I spent 10 years training for. Also fun activities and adventures with my now grown up family as we used to do.
Describe your worst day with ME/CFS/FM 
Sick, just sick. My whole body hurts so much, pain, burning. I feel so sick, unable to do anything but rest as best I can, which is almost impossible with the pain and sickness.
Describe your best day with ME/CFS/FM
When I can get out, clean and fresh. When the pain can be dulled by pain medication and when I feel happy enough for the pain not to matter.
Describe your typical day with ME/CFS/FM
There is no typical day with M.E.
What would you *most* like the world to know about living with ME/CFS/FM 
You will never know how bad it can be unless you have it yourself. I never understood M.E. until I had it. It’s like being sick in reverse..the usual things to do to feel better don’t work. Exercise makes the illness worse, anything using energy makes it worse..even the happy things. There’s no cure.

And here is Mandie’s long struggle with the illness, she was diagnosed in 1995.

“That the people suffering are still the same people who need to be part of the human race and not ignored, shunned or pitied.”
What was your life like before you first fell ill with ME/CFS/FM? 
Full, I had two children under 5. Worked full time in a job I loved and had just helped to restore and rebuild a house
What do you miss the most since having ME/CFS/FM 
Knowing that on any given day I can do “normal” things. Having friends and a social life- being able to work full time. Being considered a full person
Describe your worst day with ME/CFS/FM 
No control over limbs- incredible pain, headaches, brain fog. sleepless nights
Describe your best day with ME/CFS/FM
being normal again.
Describe your typical day with ME/CFS/FM
alarm goes off, I have to snooze it for half an hour before getting up else my legs collapse. Showers have to be judged as they make me ill. Pacing- no background noise like radios- tired all the time.
What would you *most* like the world to know about living with ME/CFS/FM 
That the people suffering are still the same people who need to be part of the human race and not ignored, shunned or pitied. Also- that doctors do not always recognise the illness so it takes a lot of courage and effort for sufferers to get what limited help there is.
Anything else you would like to share?
There is a life to have with ME.

This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.

Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.