New Year, New Plans

I love the New Year. Christmas is for family, friends and food, but the New Year is for planning the future, making goals and exploring the potentials. I was glad 2018 was receding away, taking along with it the pain and uncertainty of an unknown future, but replacing it with more medication and…interesting symptoms.

I’ve never had problems with the cold, and thrived outdoors in water and snow, perfectly happy up in the mountains in the ice, and then it changed. Cold, numb white hands and feet unable to be warm up or grasp anything smaller than a shoe, and the introduction of an electric blanket to fend off the worst moments at the end of a long day. Now I really feel like I’m getting old. Books as well. Books exploring the causes and effects of SLE, how to cope, how woo can help (this really was woo…crystals, essential oils and prayers) and interestingly how diet can help contain the sources of a flare up of symptoms. My cholesterol was very high, as was blood pressure, and I had started to acquire strange rashes and irritable bowel symptoms. I wanted to explore further, so I wanted to see what a vegan, non alcohol, non caffeine and gluten free diet could achieve. I never do things halfheartedly, so I dived in. In three months I had reduced the cholesterol to just above an acceptable amount (effectively halved it), less irritable bowel symptoms, less rashes.

But quite boring until I broke, after several beers and dived into a chicken and garlic sauce kebab and cheesy chips. No guilt, but a thought of ‘could try harder’, a common comment written in red on my school work. At least better than “See me”, written by my GP or Consultant. Did I continue? Yes, on a broadly vegan diet, but with a penchant for vegan fast food. Sometimes, I even disappoint myself.

New paths, old territory

For a very long time, I have avoided the power of woo. Let me explain. Over the years I’ve seen the impact of self motivation, leadership talks and self belief, plus seen (and experienced) the effect counselling and mental healthcare can have on the individual, and am of the mind that if it falls in these two camps, it’s good and beneficial, and if it doesn’t, it’s either a childish notion or a scam. I’m a bad old skeptic. So, like a good patient desperate to try anything that would help their condition (and would stop this watery stuff leaking from my face – I’ve been depressed and even back then, I felt something. This was a compressed ball of absolutely white hot stress), I attended a 9 week course of mindfulness.

Of the group, I was the only male, which consisted of a wide range of ages and reasons to attend. Run by two very calm, very warm mental health nurses or therapists (I suspect they were nurses, as I work with many – and thank you) this was a guided path through many different exercises to help control anxiety, introduce meditation and explore relaxation. I hadn’t slept properly in several months, was in constant pain, had started several new medications where previously I never took anything and been diagnosed with ulcers, all mainly down to ancestral DNA. Thanks ancestors, more about you later. One of the first things introduced was the use of lying down and relaxing, while a voice talked you through a body scan, which focuses on the awareness of your body parts from toes to head. Which I promptly fell asleep whilst performing, or relaxed, drifted off, passed wind and fell into a deep slumber, so I apologise if you were there and had to experience it, but it did help. Later, we moved on to meditation and the understanding of mindfulness, which allowed me to get a handle on what this actually was. “Living in the moment”, a term I had read many times but couldn’t visualise, until the realisation I was doing it, at times, on my own, whilst out on a hill, mountain or moor and totally engrossed in the sky, landscape or nature. And I recognised it for the mindfulness I seeking.

I was slowly adjusting, mentally and physically, had changed my diet and more importantly my outlook. Thank you to those who got me there.

About this time, as I couldn’t get away so often as the weather had changed or I was busy and feeling better again, I decided to use the weekends to explore and start to bag the hills in my local area, to try and reduce the number of hills and mountains left to climb. I was started to find my feet again.

Exploring your own back yard

I have always been focused on the big hills and mountains of Wales, Scotland and the openness of Dartmoor, as well as the cold wildness of the Norwegian mountains and fjords from my younger service life. I hadn’t really explored the south east, only seeing the crowded towns, housing estates and roads of the south coast, but with weekends extended by a day, and influenced by a fantastic colleague in my workplace, I resolved to explore the hills surrounding me. And learn I did. Fantastic views, looking out to sea and inland across the green patchwork of the South Coast. Cold, beautiful sunrises, wind lashed hills and secret ruins amongst the woods and lanes that have escaped the planning and expansion of a growing population. Long may it do so.

Early mornings are the best time to start, in the cold predawn, in time to reach the sun rise and then on, onto the hills where joggers and dog walkers take their morning exercise. A lot of hills can be reached not far from the roads in this area, so it was easy to park the car, walk metres to a few miles to the peak and back, and be back in time for lunch and family duties, or to rest.

Wild camping is allowed in only certain areas of the UK, opposed by landowners especially close to popular long distance routes and tolerated in other areas if you are stealthy enough. You can’t be moved on if they can’t find you… My own plans in this area is to apply some stealth wild camping in areas along the south coast in the summer, along with some wild swimming if the SLE allows, as luckily such places exist in my surrounding area. I have the kit and the experience and have often wanted to escape and sleep on a beach, to be awoken by the sound of sea on shore. I’m fast appreciating the seizing of moments, snatched from a busy world to stop and relax. Must be this mindfulness acting up again…

New paths in familiar territory

After a failed attempt in December 2017 to get to the highest tops on Dartmoor in the the North (At that time I was exhausted, I thought it was because I was fat and out of shape – I was, but I think the SLE played a part!), it was time to try again. And boy, I was on a mission during that week, 7 days of late summer walking on the moor and I saw so much and with hardly anyone about. Photo’s came out great and there was time to ponder on what the SLE meant to me. I was getting tired after each day, not losing weight and ached to high heaven. My blood pressure felt high, I suspected I had a stomach ulcer and I looked tired all the time. I took a photo of myself to check, and saw the rash across my cheeks that I had read as indicative of lupus, and bear in mind, this was my early days of really understanding what I had developed.

I remember sleeping a lot and taking analgesia for the pain, but was to have confirmation of SLE. I think this was one of my best trips yet, as I felt free, able to choose where I could go, stayed at some fantastic places (campsites and wild camping), without the dog this time and felt alive, but with a doubt of how long this continue.

A visit to my Consultant confirmed my concerns, and soon after I found with the most understanding and helpful GP I have ever met in my life. I was referred to a cognitive behavioural therapy based mindfulness course, and it was discovered that I was owed a very large amount of leave that enabled my to take my worst day of the week off (Monday!), and at this time dropped all notions of attempting to gain promotion and focus on my own wellbeing. Which was hard, and I’m still learning to do – maybe one day I’ll get the hang of it). My journey into woo was about to begin.

First steps on Dartmoor

Is starting something like this supposed to be easy? I don’t know for others, but sometimes I procrastinate. The will is there but the body is a bit slow to catch up…

The start had been made last year, at the end of April 2018. All the hills had been identified, routes planned and time allotted as I felt if you have to start, make it easy. Or I was dragging my feet. And although I had spent years on Dartmoor, if felt like an awfully big adventure. I was lucky with the weather, cool dry morning and sunny days for the most part, grey and drizzle for the latter part of the year. And such mornings! Full bursting sunshine (although not great for the SLE) of an orange fireball in the morning, cold, frosty, freezing fog at the start of the year that resulted in the damage of tent zips, wild camping in woods with my faithful hound, Angus (a black cocker spaniel with the size and character of a 4 year old boy), who decided that although walks are nice, he’d rather be at home on the sofa being hand fed biscuits by my wife. No wonder he is the size he is…

The Dartmoor hills are called Tors if they have the crown of granite poking out of the moorland tops and are very impressive in the quiet of the evening, solo camping amongst the grass and heather of the moor. Clear nights in my experience have been few and far between, as I’ve been far to busy to notice or I’ve slept under a bed of cloud or mist. One of my recent memories was waking at three in the morning wondering why there was a torch blazing at my tiny tent in the middle of nowhere. There wasn’t, and I stepped out into one of the clearest, moon filled nights I have ever seen, with a blanket of ice and frost covering the ground and I have never known it so quiet and….eerie? It was like stepping into a dreamworld, so bitterly cold and still, it seemed time itself had stopped and taken every human reference with it. I loved it and it remains one of my most abiding memories of my time on the moor.

More trips followed as the weather improved, taking me into areas of the moor I had never really visited before, or had just passed through. I explored the northern and eastern fringes, stopping long enough to walk to the top, log the hill and move on past the crowds of day trippers. I explored prehistoric and medieval farms, villages and compounds, gaining strength and exploring my own limits of what was achievable and how long it took to recover after a full days exercise. I was on my way.

The Unreachable Goal (Or, The Hill List Challenge* (*Thousands of them!))

So, Onward! Faced with the thought that my walking days were over and it was time to hang up my boots, I found it rather hard to grasp.  It made sense that I hadn’t been right for years, I was always hit hard with chest infections and colds but it felt as though it was the end of the road for everything I’d known.  I loved the outdoors and it was time to throw the towel in…

Cue a telephone call and visit to my GP (who couldn’t have been more upfront and honest with me – thank you!) and I felt knew me better than I knew myself, and so I was referred onto a mindfulness course.  I am somewhat a skeptic about things that are woo, but I found myself taking to this guided meditation and the practice behind it, so this and the people around me certainly helped me through that dark lane, whilst some time away from work did wonders.  At this time I was also looking for promotion or another role to develop myself , which came crashing down about my ears at interview – I was terrible and knew it, made all the more embarressing as I coach this in my current job.

With this break away from work, and with a need to not give up (or feel sorry for myself), I looked around for something to strive for, as I needed to be outside and working towards a goal each time.  As I had walked a great deal in Wales, Scotland and England, I really wanted to continue this, and so set about wild camping on Dartmoor, the place I knew so well.  As I was doing this, I discovered an iPhone app that listed all of the listed hills in Britain and Ireland, and as there seemed to be an endless list, I thought…why not?  I knew my way around a map and compass, wasn’t daft in the hills (or so I hoped) and it was fitting that I would choose this as a way to escape from the daily grind.  Plus, I would rather be up a mountain than sat watching the world go by. Easy choice…I would walk all the hills on that list in the UK until I couldn’t.

You have to start somewhere…

“Well, it looks like Lupus” I told myself as I finished reading the charity support page,  having listened to my Consultant and looked at the blood results.  Six months later, here I am sharing my thoughts and inviting you to accompany me on the journey of learning to live with systemic lupus erthematosis (SLE).  I have no idea where and how far it will take us, but I hope it should be interesting.

I have had heard of SLE before, but it never meant anything, as I never knew anyone with it, I thought, certainly no one in my immediate family.  I’ve always led an active life, starting with a childhood growing up in Devon and Cornwall, exploring the rivers and surrounding moors of the Tamar Valley, which led onto activities in the Cubs, Scouts and Army Cadet Forces and then escaping the constrictions of school and academia by joining the Royal Navy as a boy sailor to see the world and have adventures, of which there have been many, and more I hope as that is the intention.  Having spent 23 years in the Royal Navy, I moved around freely in my career, moving when the inclination and opportunity arose, always seeking to learn and achieve.  The dizzy heights of promotion were not for me, as a natural introvert I never sought out the limelight, but rather wished to see the bigger picture and influence how the world rotated, preferring to lead by action and example, than to strut and and shout like some.   This led me from the role as Squadron Writer with the Fleet Air Arm, to Leading Medical Assistant with the Royal Marines, to Registered Nurse in the Queen Alexandra’s Royal Naval Nursing Service and then into the National Health Service.

What did I learn through all this?  Self reliance, self motivation and self belief, never to follow the crowd, and to trust yourself – which I think is going to be tested as we move forward.  The past has been a good heritage of exercising this in my family, as my father has been a Royal Marine and my mother his constant companion, where they worked as a team raising my sister and I, moving across the country and enduring the conflicts active service life can bring.  Historically, my known ancestors have led interesting and eventful lives, and I hope they can look on with some satisfaction that I walk in their footsteps. Onward.

 

 

 

 

 

 

The Journey Begins

The Men That Don’t Fit In

There’s a race of men that don’t fit in,
    A race that can’t stay still;
So they break the hearts of kith and kin,
    And they roam the world at will.
They range the field and they rove the flood,
    And they climb the mountain’s crest;
Theirs is the curse of the gypsy blood,
    And they don’t know how to rest.
If they just went straight they might go far;
    They are strong and brave and true;
But they’re always tired of the things that are,
    And they want the strange and new.
They say: “Could I find my proper groove,
    What a deep mark I would make!”
So they chop and change, and each fresh move
    Is only a fresh mistake.
And each forgets, as he strips and runs
    With a brilliant, fitful pace,
It’s the steady, quiet, plodding ones
    Who win in the lifelong race.
And each forgets that his youth has fled,
    Forgets that his prime is past,
Till he stands one day, with a hope that’s dead,
    In the glare of the truth at last.
He has failed, he has failed; he has missed his chance;
    He has just done things by half.
Life’s been a jolly good joke on him,
    And now is the time to laugh.
Ha, ha! He is one of the Legion Lost;
    He was never meant to win;
He’s a rolling stone, and it’s bred in the bone;
    He’s a man who won’t fit in.
Source: The Spell of the Yukon, and Other Verses (1911