Crippled by Frances Ryan – a review

I bought a book earlier this year, not long after it was released. I knew I had to read this book, yet I put it off. I’ve read more books this year than in perhaps the last ten years put together and I’ll probably write more about my (largely non-fiction) reading explorations more as the year closes out. Since I started my epic reading journey last Christmas and developed a goal to read 40 books this year, when I found out about Crippled: Austerity and the demonization of disabled people, I knew it was a book that would contribute to my list of 40. Somehow, for me, there was no getting away from it. As a practicing social worker of 10 years, my politics have generally been left-leaning. Now, as an individual who is unable to work and receives disability benefits due to moderate (sometimes edging towards severe) ME I’ve both been involved in the commissioning of public services to families with disabled children, and experienced the tortuous and demoralising process of applying for disability benefits myself.

Having often read Frances’ Guardian articles, I knew this book would be well written and well researched, and I knew that it would be tough. After reading the introduction and the first chapter on poverty, I tweeted that I’d put off reading the book as I knew it wouldn’t be easy and that I found so much of my righteous anger had somehow run away (perhaps along with my energy and social work career!) and instead I just felt sad. If you want escapism, this isn’t the book for you! Francis throws statistic after statistic and research and professional analysis at the reader in a damning onslaught towards the policy makers and by association, the voters who have been subject to a comprehensive propaganda campaign by ministers, MPs and the media in order to scapegoat the most vulnerable people in society.

What makes this book so powerful is that it is written by an insider. Frances doesn’t discuss her own disability in the book in great detail, however she frequently refers to ‘we’ when writing about disabled people and occasionally mentions her own experiences. The dozens of individual stories gathered in the writing of the book and through the author’s journalistic career bring the statistics and qualitative research to life and I learned a great deal, such as the numbers of disabled women who resort to sex work just to pay the bills and feed themselves as benefit cuts mean that they have been unable to make ends meet. Other matters covered, such as the lack of accommodation and access to services were striking. One particular story of a professional man who developed ME brought me to the edge of tears. He became homeless after falling ill and went from sleeping in his car, to spending nights at Heathrow airport and on night buses to stay warm, having to store his wheelchair in a lock-up for when he needed it. Under the Tory government over the last decade if you found yourself with a chronic illness or became disabled and you didn’t have support around you, evidence shows that you would become vulnerable very quickly and the safety nets which may have existed just a few years ago were quickly disappearing.

While on holiday recently, just prior to reading Crippled, I read a book called Sapiens: a brief history of humankind. It has sold a million copies and is endorsed by Bill Gates (I think you could spend all your time reading only books that are endorsed by Mr Microsoft!) Sapiens was a fascinating journey through pre-history and evolution to the development of language, finance, infrastructure and biosciences. The book hinted at what the collective ‘we’ may become in the future. What about Artificial Intelligence, Cyborgs? These are no longer things of science fiction but rather very real morality matters to be wrestled with. Sapiens ends by asking some stark questions about humanity’s potential evolution:

“…since we might soon be able to engineer our desires…the real question facing us is not ‘what do we want to become?’ but ‘what do we want to want?’”

Harari (Sapiens, 2014)

With the potential to create a future race of perfectly performing human/machine hybrids with unlimited lifespans, where does eugenics come in, and how is disability viewed in the future? Will there be a greater push to inclusion and accessibility or will some areas of society continue to find ways to ‘other’ disabled people by limiting and curtailing disability and scapegoating neurodiverse individuals, for example?

Youval Noah Harari, the author of Sapiens talks about ancient hunter gatherer tribes who would leave elderly and infirm family members behind to die if they could not keep up. It was a necessity but it was also brutal. I guess I’d be left behind immediately to fend off the sabre tooth tigers on my own! It was highlighted that some societies throughout history have been more dispassionate and others have been more caring. I wonder what would define the history of early 21st century human Britain? Somehow, Crippled felt like the British updated final chapter to Sapiens. Ryan concludes her book by considering how disabled people are perceived and how substantial change can only happen if perceptions are challenged. I was surprised to discover that research finds public perception of disabled people to be slowly changing for the better. More members of the public believe that disabled people should be receiving benefits to support them and fewer are seeing disabled people as scroungers. As Francis Ryan tweeted in reply to my note of sadness after reading and commenting on the first chapter “I hope the book brings more than sadness soon (Hope to come, I promise).” We have to hope that moving forward our society sees the important role disability plays in all our lives. I have to hope that the young disabled people I worked with until 18 months ago, who experience both physical and learning disabilities, have a future lined with more opportunity than the scorn the government of the last decade has shown towards them.

If you have any doubt about the disdain shown towards our most vulnerable by those in leadership of our nation (bedroom tax, withdrawal of services, benefit cuts) and the reality that things could and should have been much different (far more money was spent on trying to reduce benefit fraud than tax evasion, where reducing tax evasion would have improved short falls for social care), please read this book. Then make sure you vote.

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This body will self destruct in 5,4,3,2….

It occurred to me this week that pacing and energy management with ME isn’t a natural thing to do. There isn’t some ingrained evolutionarily mechanism which sets off a big alarm and flashing red light in our head saying “you’ve done enough for today”. It’s a weird life skill most never need to consider. For most, If they need to do stuff, they eat healthily and exercise and generally their body allows them to do the things they need to do. Without getting into the mind/body connection discussion, we were made to develop in order to perform rather impressive feats.

Yet here we are, somehow having to decide how to use our ‘spoons’: or energy allowance for the day. It’s like those of us with ME are on some sort of rationing system because the universe forgot we’re no longer at an intergalactic energy war.

I’ve now been living with ME for the second time, for just over 18 months. This week I’ve had perhaps the ‘best’ week I’ve had since I became ill. It has also coincided with us moving house. I’ve been carrying boxes, putting up curtains and doing blokey things. Have I paced myself? Not really, even though I’ve maintained my strict afternoon rest schedule, I know I’ve been doing too much. On the whole, the constant ache hasn’t been there, the brain fog is reduced and I’ve had a spring in my step. The best thing has been having the ability to enjoy interactions with my kids rather than me being irritated by them due to exhaustion. My mother in law has been staying and (I don’t think she’ll read this!) I think it’s fair to say we’ve really enjoyed each other’s company!

Having said all that, I’m writing this blog post in bed. Is this the start of a crash? Too much too soon? I bloody ripped up the energy envelope and set it on fire. I’d go to the stationery cupboard and get a bigger one but we haven’t decided where the stationery cupboard is going to be and lots of things are still in boxes!

So no, we don’t have this internal ability to regulate our energy output without strict enforced religious-levels of observance. I had seven years of learning the art as an adolescent, but I certainly was nowhere near mastering the discipline then.

The best way I’ve found to keep on top of reducing my activity levels when I have energy? Other people. I don’t yet have the self discipline to slow myself down. Talking with my therapist has been useful as I’ve discovered that I have the personality type where I feel the need to give of myself. So if I can’t give out to others, when I suddenly have energy, I’m pushing too hard too soon. I suspect a lot of people with ME have a similar personality type.

I’m fortunate to have family around who know how this all works. Even my kids understand the output/punishment formula and will caution me. I slung an old electric radiator from prehistoric times into a skip the other day and unfortunately for me, both my mum and mother-in-law saw and I was severely reprimanded! Even though I know this cause and effect system inside out, of exertion and exhaustion, those around me are able to more effectively step back and see the ultimate consequences of my actions while I’m happily running on the fumes of adrenalin.

I know so many Spoonies don’t have a close physical support system. If you don’t, I’d urge you to use social media to make connections and allow the spooniehood to keep you accountable. We’re all part of one big ‘Energy Addicts’ community. During this past week I explained on twitter that I’d had an upsurge in energy and that we were also moving into the farmhouse where I grew up. I asked people to tell me to slow down. A lot of people responded and I felt genuinely supported. Some even tweeted me randomly during the week asking if I was doing too much! I’d like to thank everyone who tried to keep me in check. I know there’s been times when I could have pushed myself further but didn’t. Sometimes I got the balance right but often I didn’t.

If like me you’re an Energy Addict, please listen to your body, plan your day or week, give yourself alloted rest times and keep to them, even if you’re feeling OK(ish) and try to do a bit less than planned if you know you’ve been too ambitious. If those around you understand and know you’re on an energy binge, stop and listen to them, they probably care about you!

Balance well my friends.

As for expecting a crash that may or may not come and wondering how long this is going to last, I guess that’s for another blog, all I’ll say is, optimism seems to be a currency we spoonies can’t afford. The exchange rate is too damaging to our energy pockets. If we’re not careful though, all we’re left with is pessimism. There must be a middle ground, where our spiritual and emotional reality can rest.

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Picture of footbridge over the Thames with St Paul’s Cathedral in the background and various groups of people walking over the bridge. The sky is full of grey clouds. I took this picture when I visited London with my daughter in summer 2017 before I became ill. We enjoyed visiting the Tate Modern and St Paul’s.

Social media for spoonie survivalists

I had a couple of twitter conversations with online spoonie friends recently where we had a bit of a mutual love-in. We shared our appreciation for each other and emphasised the support provided by this odd international community of chronic illness survivalists. I said that it would be amazing if we could actually meet up in real life and just spend time chatting. There was much agreement.

Community is important in any walk of life. People need each other and I think we evolved in a way whereby the individual could only thrive when part of a group.

Going back to the time of hunter gatherers and then into periods of agriculture and modernity, there has always been an emphasis on mutual community, co-operation and shared ritual.

I was recently reading about the ancient cave paintings in the South of France which were discovered in the past few years. These paintings are high up on the ceiling, so, very difficult to reach. There are hundreds of paintings which are thought to have been created between 90 and 30 thousand years ago. It’s not clear why people squeezed through tunnels in the dark and painted these images of animals, birds and people by flame light. Why go to the bother when you need to eat and clothe yourself as a priority? Estimations include prayers to the spirits, initiation ceremonies and initial indications of the human proclivity to create art. There was though something in the human drive for communal ritual. I think this is somehow innate in the human spirit.

Since I became ill 18 months ago, social media and Twitter in particular has become a vital part of my life. As increasingly I’ve lost friends and colleagues in the physical space, I’ve gained important friends online who understand the Chronic illness way. While the hunter-gatherers of prehistoric times depended on each other for survival, I think we spoonies do depend on each other for mutual encouragement and empathy. I know my journey would have been so much tougher without the amazing friends I’ve made and communities I’ve become a part of. I feel honoured to have been welcomed into these spaces.

One person commented during our discussion about online support, how they didn’t know how people coped with chronic illness before social media. I do. As an adolescent with ME for 7 years in the 90s (prior to recovering in my late teens), one of the biggest issues was isolation. It was compounded for me due to living on a farm, miles from civilisation so mates couldn’t just pop in on the way home from school. I became involved in a support group for young people with ME, initially as part of the ME Association. Things were well organised, but we mostly depended on the postman. We had pen pals and the pen pal section of the group’s magazine was full of young people looking to connect with other young people. As one of the few lads who enjoyed letter writing I ended up with quite a few female pen pals! I had pen pals from the North East, Scotland, Wales, London and the Midlands. One of my friends used to even make her own perfumed paper which she used to write on! These connections were so important, especially when we all shared the social stigma of having an illness which was either unknown or largely disbelieved.

Years later, I was able to regularly visit my friend in London as my energy levels increased. After I recovered and moved to the Midlands with my wife, we ended up living near my former pen pal there and my wife and I were honoured to be asked to be Godparents to her son. He’s now 17 and I feel I’ve been a rubbish Godparent!

Back in the mid 90s when all this paper based activity was going on, we were only just getting to grips with the Internet and dial up modems. If you were on the Internet, no one else could use the phone, and rural Internet was terrible, so mostly limited to emails, and we were just getting our heads around that! We could support each other via email, you just might have to wait until your mum was off the phone, and then check back later to see if your friend had responded to your message!

Considering how technology has evolved, while I have real concerns about data protection and the practices of Facebook in particular, our online platforms are so important and I’m so grateful for our spoonie communities, for podcasts and those who are have enough guts to share their lives on you tube.

I think the one thing that really stands out about Twitter is the immediacy of the support there. I recently tweeted that I ‘Fing hated ME’. I don’t usually feel that peeved as it’s not a healthy state to be in all the time, but right then I needed to get it out there. It was amazing how much this resonated with others and there seemed to be this communal release valve which activated as people commented on how, while we all do often put on a brave face, it’s good and healthy to share our frustration and hatred towards our illnesses.

I’m not sure that social media can truly replace the need for friendship and association which comes through face to face interactions and I think we can have thousands of online friends and still be lonely, so it’s important to reach out to local groups and friends if possible.

In the meantime, let’s continue to make our online communities amazing. Let’s be welcoming. Let’s get our paint brushes out and paint our cave ceilings together to let others know that they’re not alone, and to create something for future generations to know we were here.

What do you appreciate about online support? Are there things that organisations can do to improve opportunities for connection? Let me know in the comments!

Living in a caravan over the winter, we needed to scrape snow and ice off the Internet extender box to be able to tweet and interact with the outside world!

MEversary

It struck me late last night that today is another MEversary for me. It’s exactly 18 months since I rang in sick and didn’t go back to work. I know, it seems a bit odd marking a half year, like a parent who tells you their child is 30 months old, and you wonder how quickly you can exit the conversion (She’s 2 and a half for goodness sake!) Somehow though, a year and a half feels significant in the ME journey. It’s a long enough time to pretty much put any concept of Post Viral Fatigue Syndrome behind me and accept that yes, I’m in this for the long haul. 

Even 18 months later I occasionally get an odd feeling that I’ve neglected to go into work, and, what will my boss say?! I wonder whether this is because I never really managed a proper ‘ending’ and endings are so important when it comes to managing grief. 

Sometimes random work-based tasks come to mind and I have that sad but then also comforting realisation that it’s not my problem anymore. My work is now to rest. I have to take a professional approach to my work. This includes being disciplined, timely and diligent in my responsibility. If I don’t rest then I won’t be able to cook dinner for my family as I’ll use my energy resources too soon and crash out. Seeing rest as a job has been a good analogy for me, as I no longer feel guilty about going to bed and shutting down. 

It seems that amongst the online ME community MEversaries are really significant. Many people put how many years they’ve been ill on their twitter bio, or mention it during a Facebook interaction. I think, rather than the parent with the 37 month old child who’s fastidiously marking milestones off and measuring development on their iPhone app (they’re deffo iPhone people, sorry!), marking time is a way of dealing with grief. I think it’s also so that others can recognise the ME/CFS war veterans and know that this is a person we can trust to talk to us honestly and without illusion about the realities of life with ME. I don’t really like the language of war or battle when it comes to ME as it places an emphasis on striving and activity, which in turn reminds us of the risks associated with over-exertion. Yet, sometimes a soldier analogy is needed. 

To those who have fought on through years and years of this nasty illness, I salute you! 

I’m not sure how to mark this day. When I hit a year, I made sure I had a chill-out day. I think I did myself a fry up at lunchtime, like the comforting thought of going to a greasy spoon cafe without the noise and energy drain of getting there. Those places are timeless and somehow so is a fry up… we step outside the constraints of time and become present and at one with the experience of the all-day breakfast, even if it makes us that tiny bit fatter and doesn’t help our healthy eating regime. 

If you have an illness anniversary coming up this summer, I hope you still have some hope. I hope that hope finds you when you need it. I find that when I’m hopeful, I’m in a much better place in myself and my interactions with others are more positive than when I’m dwelling on the frustration. Hope doesn’t have to be about full recovery, but of getting out tomorrow, of seeing an owl in flight, of the sun shining and of further funding into research. Here’s to acknowledging the journey, while hoping for a better day. 

How do you manage ‘self care’ when it comes to Spoonieversaries? Do you mark the occasion or try hard not to think about it? Let me know in the comments.

Book giveaway!

This was meant to happen last month during ME awareness week, but life, or namely, ME got in the way!

Catherine Saunders over at @Severe_ME on twitter and I have teamed up to offer a free copy of her excellent book, Understanding Severe ME.

Take a look at Severe ME (@Severe_ME): https://twitter.com/Severe_ME?s=09

Catherine has lived with severe ME for many years but thankfully recovered to such an extent that she has been able to write about her experiences and offer insight and support to others.

If you’d like to be in with a chance of winning a copy of her book, please email me at:

thelowsidespoonie@gmail.com

You do need to do a little work however! We want to know what percentage of those with ME fall into the severe category?

So that’s it, answer the question in your email and the winner with the correct answer will be chosen at random.

Closing date is Sunday 30th June.

The winner will be announced on my twitter page @talmandaniel shortly afterwards!

You can access Catherine’s blog here

The life in things (and reconstruction)

My previous blog contained a video reading and text from a poem I wrote at a point in time where I was starting to wonder whether my situation was going to be longer term and I was having to process this dawning bleakness.

It’s grim indeed. The poem used imagery of dark caves and animal excrement. I’m not sure many people fully understand the extremes of life that we have to face. In my poem, I used an analogy, that what I was experiencing was like old age, “enthused and coming to greet”. I wrote that line after leaving the phlebotomy clinic at my local hospital. This was long before I considered the possibility of using a stick to help my walking and being ok with the social stigma that comes with it. But I was struggling that day when leaving the legalised vampire den. A very old lady with a walking frame was making better pace up the pavement than me!

Sometimes it is hard to really reconcile the reality of our situation, to realise our limitations when the past and our future collide in some sort of mining explosion. For me it was the 24th January 2018. Boom.

So, how do we live with this daily grind of exhaustion, neurological pain and a myriad of symptoms which could invade at any time of day or night? That’s not a question I can answer on behalf of the ME community. We all have our ways of managing. Sadly some can not, and suicide is a considered option, especially when there is no end in sight.

I have to say, almost a year ago, around my birthday at the end of May, there was one moment in time where I felt I could get in my car and drive off a bridge. Only once, and only very briefly. My world was collapsing. I know I would not have done that, but that fleeting moment gave me a huge insight into the experiences of those who are brought low by ME. ME leaves us feeling powerless. We have little agency. How can you plan anything when you don’t know how you’re going to be tomorrow, never mind next week?

Yet, I’ve learnt to, as an old Sunday school song I used to sing went… “smile at the storm”. Where everyday we lament the death of things, we have to also celebrate the life of things.

When I worked as a Supervising Social Worker with foster carers to support them in caring for some of the most vulnerable children in our nation, we used methods of positive psychology to help carers deal with challenging situations. It sounds like something you might find in the bargain basement self help section of your local discount bookshop.

Positive psychology isn’t just thinking positive thoughts, but neither is it some impenetrable theory.

Mindfulness, gratitude, encouragement, seeing the bigger picture, empathy, vulnerability, self-care, seeking and accepting support, realising self-worth, knowing our limits and being content within them (acceptance), verbalising the problem, reflection, and embodiment are all things that come under this huge and slightly vague banner. Sometimes utilising personal faith traditions is really beneficial in these times, however its good to recognise when they may be weighing us down further due to unfulfilled expectations.

So with all this knowledge, you’d think I’d be in a good position to work through my own travails and life turmoil. Not so. But in time (and with a great therapist who gives me a great deal) I have been able to recognise and name my own feelings and the often resulting behaviours of stress and grumpiness that come out of these feelings of powerlessness.

For me, being thankful for the all the positive things that have come out of my illness is really important. We had to sell our house and move from city life in the East Midlands to my parents’ farm in Northumberland. Our children have a much improved quality of life and seem more carefree. As a family we’ve laughed more together in the past 9 months than in the preceding stressful years. The life of things.

One of the greatest ways, for me, in managing the huge life and health change has been meditation and mindfulness. Now, rather than stressing about when I’ll be able to get back to some form of my career (after the summer? after Christmas? when I’m at THAT level of consistency), I choose to live each day as THIS day, in THIS moment, to recognise that striving doesn’t help, but to be present with my pain and weakness.

Today I collapsed while reaching for a laptop charger on a shelf. My legs just gave way. When I was an adolescent living with ME this used to happen quite a bit. Sometimes, that version of me feels like he was living in a distant universe of fuzzy memories, and I can analyse my teenage self like I might a child on my old social work caseload. I’ve often wondered whether my younger self sometimes collapsed as a form of behaviour because back in the mid 90s ME (much like now sadly) was disregarded. In my desperation, did I exaggerate to get people to see my plight?

After collapsing today and grazing my knee, I feel like I have to apologise to my younger self for doubting my memory of his lived experience. Somehow I wish I could get in a Tardis, hop out and spend some time with my weary 13 year old self and say ‘dude, it’s going to be ok, just take it one day at a time, watch the rain drops on a leaf, listen to the evening blackbird song, stay in THIS moment rather than striving for THAT which is currently unobtainable, and for goodness sake, when you do feel a bit better, don’t go crazy’. I might also have a sneaky game of sensible soccer on the Amiga 500!

For me, in letting go of my attachment to desire for something that is currently out of reach, I’m able to deal with the grief of what I’ve lost, and to acknowledge the present for what it is, a moment in time, a story, a construct (Please don’t misunderstand, I’m not negating the horrific reality of our lived experiences through this way of seeing). Tomorrow may be a better day. This is all a bit abstract, I know, but I’ve found that these tools for seeing and knowing are really helpful for me.

Yes, we need righteous anger at the neglect and disdain we’ve experienced as a demographic of real life individuals, which is why ME awareness week and Millions Missing are so important. we need to hope and expect change for better research and treatment and an improved standard of compassion from professionals and politicians. Yet, we also need to survive the day, and then the next one. For me, it may be mindfulness and meditation which enables me to lay down my striving and just be. For you, it may be a Game of Thrones box set and a call to an old friend.

I hope you find your own coping mechanism to enable you to find purpose in the mundanity, and the inevitable passing of time.

What do you do to manage the frustrations and mundanity of each day? Do you feel able to smile at the storm? If you can’t and just feel anger, that’s OK. Be present with the anger and then release it to the wind. Open the door and let it out, like a cat who won’t stop asking. The anger might be back tomorrow, or next week. That’s OK. Be present with the anger and then release it to the wind. Again.

My mum has MS. She’s doing really well, however around 4 years ago my dad finished his project to convert part of the old barns on the farm into a single storey home as a way of supporting her into the future. What used to be the area where the fleeces were stored at shearing time became the dining room. The workshop is now a kitchen and the old kennels, the spare bedroom. My dad reconstructed the building and created something new and beautiful from what was slowly falling apart.

Dear friend, may you find a way to reconstruct this life, creating beauty from the little messy corners, and may you really and truly experience and savour an awareness of every moment of those rare and wonderful days when there’s blessed relief.

The Wilting Way

Please note, this video contains mild swear words.

I wrote this poem in the summer of 2018, around the time of my re-diagnosis of ME. I was in a pretty dark place, however I think it helps highlight how terrible this illness really can be and how it impacts on those of us who live with it. I’ve recorded it here for ME awareness week 2019.

THE WILTING WAY

Too many steps. I’ve gone too far. Enticed beyond my boundaries, an invisible bungee hauls me back, makes me crash. Tortures beyond my limits. My pack is empty yet heavy, holds nothing to sustain my walk. The journey is no longer the bright sun-dappled path, no longer the winding and peaceful summer’s climb.

This is the wilting way.

The wilting way is the fork in the trail I did not choose, the dark route with an alternate destination. The wilting way drags me to quarter-life and fractions reduced. The way looks covered with roots and boulders and very wet moss. There is music in the trees but it’s garbled and dross, taunting as I long for the hymn and the song in my heart, it fuses with the downpour.

The wilting way closes in. Perhaps if I’d done this, or rested like that, I’d still be on that steady warm path… But somehow the wilting way was always going to find me, like an escape from Alcatraz, I’d always be back.

It’s brought me to the caves this time. I’d gamble against this, take another hell instead, but the odds were never in my favour and the caves were always reeling me in. I could hear them in the bitter tone of the music that’s incessant in my head, feel them in the fizzing feet and in my wrinkled fingers, like old age, enthused and coming to greet.

The caves echo, even repeat my empty cry. I’ve come too far this time that I’d rather have the darkness, it hurts to walk in light. The occasional shafts of sunlight attack my every part, I’m crawling on my knees this hour and the mud and bat shit fill my lungs, oh what a wretched sight.

Don’t give me twee platitudes as you watch with your smartphone and vice. Don’t speak down to me with sympathy, this was not my bloody choice. Don’t tell us we’re not worthy as you picnic on the heights. Come, sit in the bat shit and stagnant water and try and understand this plight.

We professionals with first class honours aren’t lazy, it isn’t in our mind. There are others who didn’t even get that far and have existed only in their beds.

There’s a black spot on our hands and the exhaustion came as if by spite. So come stagger with the missing and find us in these caves, truly see us in the clarty mess, listen to how we got here and furnish us with grace. If you could help us out a bit and off the wilting way, we would join you on the mountaintop and revel on that day.

Walking3

(photo from a mens walking weekend up Kinder Scout in the Peak District in January 2015)