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.
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.
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:
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.
What: Prescription glasses, Prescription Sunglasses online When: 28th June 2016 Address/Website:http://shadestation.co.uk 5 things that delighted me:
Huge choice of prescription specs – I wanted wraparounds
Really affordable. Usually 2 pairs cost me > £250. These cost me £145
Next day delivery of prescription sunglasses – are you kidding me!!!
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.
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.
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
I 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
“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.
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
Something 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
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
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
However 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.
Castle in Castro Urdiales
Day one: Setting off from a cloudy San Sebastian
Day one: Setting off from a cloudy San Sebastian
Have you got an indignant dog?
This could be Switzerland or Germany or Wales?
This could be Switzerland or Germany or Wales?
First of many stops
First of many stops
First day walking with James – reinforcements of joviality
Not the typical camino signage
Not the typical camino signage
One of the best walking companions ever – James!
Maya and her boyfriend – Dante ‘El Cabron’
One of the best walking companions ever – James!
One of the happiest people I’ve ever met – Jung!
One of the happiest people I’ve ever met – Jung!
End of 29km walk Bilbao to Pobeña
Minutes after we say goodbye to Helen and Horacio – really miserable 🙁
Minutes after we say goodbye to Helen and Horacio – really miserable 🙁
Helen assembling lunch
Horacio being the perfect traveller
Horacio being the perfect traveller
Time for a break
Helen assembling lunch
Have you got an indignant dog?
Time for a break
Sun shining, beers waiting.
James reconnecting with email
James reconnecting with email
7km was along 2 beautiful beaches. Almost doesn’t count!
7km was along 2 beautiful beaches. Almost doesn’t count!
Is this thing on?
Bilbao
Hello Bilbao
Hello Bilbao
Proof that I was at the Bilbao albergue…and it was closed. So no stamp.
Bilbao
End of 29km walk Bilbao to Pobeña
First day walking with James – reinforcements of joviality
Maya and her boyfriend – Dante ‘El Cabron’
Are you sure this is a camino?
Are you sure this is a camino?
Huge Thanks
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.
“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.
“The frustration of not being able to scratch an itch, or turn over in bed as your body felt like it was made of lead, was gut wrenching.“
Here is Jennifer’s story of how she manages a family with a small daughter and at the same time, keeping her condition under control.
When were you first diagnosed with ME/CFS/Fibromyalgia?
I was officially diagnosed at the age of 13, although my parents had suspected it for many years before this. I had glandular fever at 18 months old and afterwards I had lots of unexplained joint pain.
What was your life like before you first fell ill with ME/CFS/FM?
I was so young when I started to get symptoms I really don’t remember being completely free of them. What I do remember is feeling ok between the dreadful joint pain. I loved ballet and was really sporty at school. I can remember feeling like I could do anything. But after exercise, I would suffer horrendous pain and it wasn’t sustainable. I had to give up PE at school at 9 years old in order to maintain attendance for the academic subjects.
What do you miss the most since having ME/CFS/FM
On the inside I feel like a really active person – I long to run… I dream about it. I long to move my body freely without paying a price. I guess I miss knowing I can do what I want to without suffering afterwards.
Describe your worst day with ME/CFS/FM
From the age of 13 – 18 I was completely wheelchair bound, and bed bound for a lot of that time. My worst days at that point were pretty horrific. Unrelenting, excruciating pain is what stands out the most. The constant head pain stopped my brain from functioning properly; I couldn’t think about the simplest things. The frustration of not being able to scratch an itch, or turn over in bed as your body felt like it was made of lead, was gut wrenching. This was on top of all the other symptoms; heart palpitations, crushing fatigue, dizziness, loss of temperature control, constant sore throat and flu like feelings. I was extremely lucky to make a fairly good recovery but have had several relapses since this time when I’ve been back in this position. In between the relapses, it’s been a matter of managing my symptoms and energy and trying not to overdo things, which would always make things worse.
Describe your best day with ME/CFS/FM
My best days would be the days where I control the M.E. rather than having it control me. I can feel now whether I’m on an upward or downward spiral and I can be pretty sure of my limitations. I know what state I will be in if I push these limits. When I can organise my time and plan my energy and rest, the feeling of control is very positive.
Describe your typical day with ME/CFS/FM
A typical day is all about managing my symptoms and energy levels. There are always some symptoms including pain, heart palpitations, headaches, swelling, ‘brain fog’ and stiffness. By managing what I do and how I do it, I can reduce these symptoms and ensure I can cope during the next day. I have to plan ahead at all times to make sure I do not over-exert and have enough time to recover from any activities. Now I have a young and wonderful daughter to look after, this is a much harder job, but all the more reason to get the balance right.
What would you *most* like the world to know about living with ME/CFS/FM
I would most like the world to have a small amount of understanding. First, it is important that people understand that not all people suffering from these conditions show visible signs. Depending on my level of suffering, I can cover it up. This doesn’t mean that I am not in pain, or that I won’t be in pain later. It is also important that the world understands that the conditions do not exist solely in the head of the sufferers. It is not caused by depression, although the extended suffered can leave you feeling depressed. In fact, some of the times during which I have been at my worst physically have been during some of the happiest periods of my life.
Anything else you would like to share?
My husband sometimes knows my limits better than I do. I think this is because I don’t like to admit I have limits and I can get carried away. Most people I’ve met with a similar condition seem to have the same inner desire to be active.
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.
Dealing with ME/CFS/Fibromyalgia is not just your personal suffering and your loved ones’- but also the attitude of society: not taking you seriously as a disabled person.
Jenna, Happy Birthday. I’m so honoured to have both of you sharing your stories here.
Jenna is the daughter of Giselle, and both have suffered from this illness for a long time (12 and 26 years)
This her story:
When were you first diagnosed with ME/CFS/Fibromyalgia?
2004
What was your life like before you first fell ill with ME/CFS/FM?
I was a pretty normal little girl and I loved playing with all my friends that lived on my street, enjoying anything that gave me a chance to get mucky like painting, ‘helping’ with DIY and jumping into any mud I could find.
What do you miss the most since having ME/CFS/FM
The carefree way I lived my life, being able to spend time being a kid without constant thoughts about the state of my health and my future.
Describe your worst day with ME/CFS/FM
Pain. Sleep. Disorientation. Sleep. Anxiety. Sleep. Depression. Sleep. All strung together into a day, I will be unable to tolerate noise, bright light and human interaction will be beyond me, I will be dozing in bed while life goes on around me.
Describe your best day with ME/CFS/FM
My best day with ME is when I can get through a standard day (being able to wash and dress myself, cook myself to one meal and perform one household chore) without being in physical pain or crying by bed time.
Describe your typical day with ME/CFS/FM
I get out of bed at 13.00 and eat something easy to prepare for breakfast. I prioritise the task for the day (for instance put a wash load on) I then go back to bed from 2.30-5.30, wake up and eat dinner prepared by someone else, do a light activity such as sewing or watching TV in the evening before going to bed around 22.00. One day a week I attend a counselling session to help me fight the anxiety, depression and low self esteem mostly caused by being so restricted from such a young age.
What would you *most* like the world to know about living with ME/CFS/FM
I look exactly like you. I don’t sit in a chair (due to poor hand eye coordination and concentration I am actually unable to drive one when tired!) and I don’t have a white stick but my illness is still debilitating.
Every time I need to use a disabled toilet because I cannot physically stand in a queue I am scared that someone will call me out. “Faker”, “You don’t LOOK sick” and “Skiver” have followed me like a cloud since I was 11 years old, making it hard for me to take the steps I needed to really rest and recover for fear of the anger of the teacher, the nurses or even my friends.
Please think before you stick up for the disabled by accusing people of abusing disabled spaces, 96% of disabled people do not use wheelchairs (Papworth Trust disability facts and figures 2010) but we need them too.
If I say I can’t do something don’t try to persuade me (or any sufferers in your life) that I could do it if I tried or that I should try a treatment that worked for your second cousins dog sitter, I know my body and I have tried everything. Even if it comes from the best possible place you won’t be telling me anything new!
Anything else you would like to share?
Thank you for reading this, the fact that I can share my story shows how much improved I am. When you are with a person with ME it’s probably because they are at the peak of their health and what you wont see is the impact of that interaction on the rest of their lives.
Here is Giselle’s story:
When were you first diagnosed with ME/CFS/Fibromyalgia?
1990
What was your life like before you first fell ill with ME/CFS/FM?
Busy, fun, hopeful, hard working
What do you miss the most since having ME/CFS/FM
Walking and being “myself” I don’t recognise the person I have become.
Describe your worst day with ME/CFS/FM
Being in so much pain and having so little hope that I started thinking about committing suicide. I promised myself that if in a year’s time nothing had changed I could do it. Luckily for me as I understood more about pacing things did improve.
Describe your best day with ME/CFS/FM
It is difficult to say as ME is such a long journey. Was it the first time I woke up without a fever, or was it when I managed to walk to the end of my front garden path (5 metres!).
A day without pain is pretty good. Many of the “big days”, the birth of my daughter for example, are difficult to remember. Having ME seems to interfere with laying down memories. I think the best day is yet to come.
Describe your typical day with ME/CFS/FM
I wake up at 11.30, come around slowly, empty the dishwasher and get breakfast. During breakfast, I decide what the top priority task for the day is and try to get it done. I can do about 40 minutes before I need to rest so it might be an opticians appointment, mending something that has broken, doing my finances, getting the food bought.
Then if I am pacing properly (not always the case) I rest for an hour listening to the radio. By now my daughter will be up and we will decide who is best able to walk the dog, if neither of us can manage we call my mum, who is 84, and she walks the dog for us! Once the dog is walked there is a huge sense of relief as she has been looked after. If I have walked the dog that is my second 40 minutes used up and I am resting again.
I have one activity session left which I often use to cook an evening meal. The evening is most often spent watching TV as it is a reasonably low energy activity which I can usually manage. I will get to bed at 11.30.
Unfortunately sleep is unpredictable, It might take me an hour to get to sleep or 5 hours. When I was working part-time not sleeping was a huge problem. I feel lucky everyday that I am now living on my savings and I can be much more relaxed about it and just get what sleep I can. It is not an exciting day but it means no constant upper respiratory infections, a brain that can string 2 sentences together and much less pain.
Living like this for a day, a week or a month is not a problem, living like it for years means there is little room for friends, work, holidays or family. To include these in your life means you have to push beyond your bounds and make yourself ill. 1 night out might need 3 weeks in bed to recover. So for 3 weeks no housework is done, someone else has to walk the dog and life is put on hold, again.
What would you *most* like the world to know about living with ME/CFS/FM
How difficult it is emotionally, physically and mentally. At the moment it is a life-sentence , it never ends, there is no break from it, each day is a fight to balance what the world demands from you with what you are able to give.
Anything else you would like to share?
If you want to know what it feels like to have ME then the next time you have a bad case flu think of it lasting for the rest of your life.
I would like to emphasise that it has taken me 25 years to get from being up for 10 minutes at a time to now managing 40 minutes 3 times a day. The doctors would classify mine as a mild case of ME or in some circles “cured”. Although it is fantastic that I can now walk the dog for 20 minutes, I can’t do it every day, it hurts, I have to go straight back to bed after doing it and it means I don’t clean my house.
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.
Ben Howell shares with us his story today about how he went from a very active person building a career in the fitness industry to not being able to exercise or leave the house.
“Non-functional, like the worst flu and worst hangover, combined with having run a marathon.” – is how this illness like in Ben’s words.
When were you first diagnosed with ME/CFS/Fibromyalgia?
2011
What was your life like before you first fell ill with ME/CFS/FM?
AMAZING! At University for the second time, starting to build a career in the fitness industry, working part time as a gym instructor.
What do you miss the most since having ME/CFS/FM
Being able to exercise. Being able to do the most basic things, like wake up and not feel absolutely horrific, flu-like, exhaustion beyond words.
Describe your worst day with ME/CFS/FM
Non-functional, like the worst flu and worst hangover, combined with having run a marathon.
Describe your best day with ME/CFS/FM
They don’t really happen!
Describe your typical day with ME/CFS/FM
Housebound, unable to cook, unable to exercise at all.
What would you *most* like the world to know about living with ME/CFS/FM
It is a very real, biological illness, that is seriously underfunded, with absolute inadequate treatment from the NHS.
Anything else you would like to share?
Thank you for doing this Mike.
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.
I 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.
“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.
Something 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.
However 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.
