Tag Archives: disabled

A Twinge of Envy?

tn_wayfarerjonIf you are going through a hard time or in a prolonged stressful situation, it’s tempting to look at others and feel you are missing out. On the surface at least, they seem to be sailing through life and have it easy in comparison. Before long you may even indulge in a little self pity, which, if allowed to continue, can be a destructive path spiraling down to despair.

My wife is long-term disabled and increasingly mobility-challenged. Over recent years, I have been finding a way through two chronic illnesses and found the sudden physical restriction and loss devastating at first. There was so much stimulating and fulfilling activity, including Christian service, that I could no longer be part of.  But slowly, as I painfully let go of all that, I entered into another world.

This was a world where we were in the slow lane Continue reading

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Filed under bible, biography, Christian, chronic fatigue, disability, lifestyle, personal, seniors

Retreat – Relaxation, Refreshment and Renewal

We’ve just returned from a week spending time at a Christian retreat centre. The manor house had views to die for and was just the place to relax, unwind and let our cares and worries fall away. It was like a little piece of heaven away from work, family responsibilities and household chores.

It wasn’t just a holiday, but more a vital time to refresh ourselves physically, mentally and spiritually. Space to just ‘be’ and begin to get things in perspective – God’s perspective hopefully – and seek the way forward. The community are there to see to your needs, adults and children, and were available to lend a listening ear and pray with us if needed. There were also precious moments of time shared with other guests.

I had a completely open agenda for the time and was looking to receive – or give – in any way that was appropriate. My spiritual antenna were out. I needed to hear what I believed God was saying to me and as I stilled myself inside, I wasn’t disappointed, although this often came in surprising and unexpected ways. We came away both challenged and encouraged with things to chew over.

This was an ideal place for someone like myself, recovering from M.E. – chronic fatigue – as there were short level walks or ambles within the extensive grounds and places to just sit and admire the views. It’s the sort of thing that I would recommend for anyone, young or old, who wants to escape from the merry-go-round of everyday life for a while and discover who they are.

My wife is disabled and I was on hand to assist where needed. Also, although they had made every effort to make the old building accessible to all, there were steps to negotiate. On the last morning when I returned to the lobby after loading our car, someone I hadn’t spoken to, but had been observing me all week, turned to me on his way out and almost as an aside said, “You’re doing a good job!” and vanished before I could comment.  I thought, ‘was God saying that? ‘ Either way, it was just what I needed to hear and rounded things of for me nicely.

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Filed under Christianity, chronic fatigue, healing, health, health & wellness, illness, lifestyle, personal, spiritual

How We Slayed Smaug the Dragon

How my wife and I, despite the restrictions of chronic illness, attempted the 2.3 mile walk through our local country park. A walk that for most people would be an amble, became for us, an expedition of Tolkienesque proportions.

It had been our ambition for a while and so there we were on the hottest day of the year, setting out on our adventure! Make no mistake, it would be a real accomplishment. From the car park to the front door of the inn at the other end, was twice the length of anything I had walked in the previous three years. It was a challenge, comparable in relative terms, to my climb up Ben Nevis, when I was fit! So not only were we praying for strength to get there and a lift back to our car, but for there to be no ill after-effects! It was going to be interesting – me with my chronic fatigue symptoms and my wife with her walking finally balanced in her custom-made boots.

We set out, like two excited children, with our ali-folders strapped to our backs and my vest pockets stuffed with wallet, mobile phone, drink, emergency rations, camera, keys and sketch books and pencils. Even though the sun was full and hot, there was a gentle breeze from the sea and the going was level and smooth. This was familiar territory, but even so, we marvelled at the abundant greenness and the occasional wild flower that escaped our detailed knowledge – well my wife’s at least!

It seemed no time at all that we arrived at the first pond. Ready for a rest, we unfolded our seats and out came the sketchpads to record what we saw. There was a single open lily on the water and two ducks with their fledgling offspring and a brand-new bright red fibreglass rescue apparatus. Not being so good at drawing birds, I concentrated on the view back to the sea. After a swig of the water bottle and a cereal bar off we set again.

We rounded the bend along the straight to the next seat overlooking the large pond. This was a real picture, with a mass of lilies in full bloom and the reflections glinting in the sun. We took note of the several strange plants, with a view to looking them up back home. I made two calculations; we were just over a third of the way and the pub stopped serving food soon after two! I wasn’t sure how these conflicting facts equated, but we continued with added stimulus.

The next stretch seemed longer than expected and even though the sun was slightly veiled in wispy cloud, we were feeling the heat. However, the bridge came into sight with the signpost for the Otter Trail, indicating just over a mile to go. We crossed the river and swung right along the opposite bank towards the entrance to the woods.

We passed the point of no return and were into unknown territory. I was reminded of the book “The Hobbit”, as it felt like we were leaving Wilderland and entering Mirkwood. There was no air of mystery though, just a warm shady coolness and the gurgle of the murky river, with the occasional fallen tree interrupting the flow. We kept a lookout for otters or even a kingfisher, but had to be satisfied with the occasional dragonfly.

Up to this point we had walked side-by-side, but because of the narrow path and our different attitudes to the physical demands, we were tending to ‘string out’ somewhat. We met several fit ‘oldies’ appropriately dressed in boots, shorts and Tilley hats, striding out with purpose, but we persevered in our own way. My wife had to be more careful to avoid exposed tree roots, steps in the raised decking or the occasional stretch of mud. Whereas I was aware of my aching muscles and trying to find the right pace between full stop and a headlong adrenalin race to reach the end.

We were definitely slowing down and made several stops. I took the odd photo, but neither of us sketched anymore, we were too focussed on reaching our destination. A passing couple informed us that it was only five minutes to the end. We mentally multiplied that by three and sure enough we emerged from the delightfully cool woods to the searing hot sunshine fifteen minutes later. That was the most difficult stretch, short as it was, it was very, very hot and the road busy. My dry tongue stuck to the roof of my mouth and my eyes were on that pub doorway!

So we arrived at ‘Rivendell’ for our rest and refreshments. We pondered over the lunch menu as Ann the friendly and cool waitress hovered. I made for the bar to order drinks. I drooled over the tempting list of beers on draught, but dismissed the thought on considering what a pint of Tinners might do to my digestive system. I made a mental note however, to carry out a test in the next week or so, to see where I currently stood in that department! Just to sit in the cool bar room was a welcome relief and the hot chicken and bacon baguette made a real difference. I felt my limbs come back to life as my sugar levels rose. A lemon and lime, tomato juice and two coffees later we were ready to re-harness and hit the road back.

We set up our position in the searing sun. My wife was to do the thumbing, as I reckoned drivers were more likely to stop for her. In a few minutes several passed by, but weren’t inclined to stop. As I wondered if anyone would recognise us, a friend pulled in, wound down her window and called out. She turned the car around and took us all the way back to ‘Hobbiton’ and dropped us at our car, with just two minutes left on the ticket! How about that – we did it – praise God!

We felt like we’d been to the Lonely Mountain and slain Smaug the Dragon!

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Filed under Christian, Christianity, chronic fatigue, healing, health, health & wellness, lifestyle, personal, spiritual

Chronic Fatigue and Family

tn_family.jpgMy viewpoint as a husband and father – I’ve tried to keep it brief!

Chronic illness is a daunting challenge to a marriage relationship and family unit. Some say it can be make or break. In our case, we had a double whammy! Over thirty years ago my wife contracted a particularly aggressive form of rheumatoid arthritis and was told she could be in a wheelchair inside four years. Years later, long after our children had left home, I was diagnosed with chronic fatigue syndrome.

My response to my wife’s diagnosis wasn’t surprising, as my upbringing hadn’t fitted me out to deal with illness. In my childhood, any suffering or indeed any expression of emotion within the family, was kept mainly under wraps. My way of dealing with these things was to do something practical to try and hold things together. I put everything into my work, family and helping out where I could within the community. I did most of the shopping, including, for a time, buying my wife’s clothes and became an expert in the intricacies of M & S’s lingerie department. Our children attended the village school and we became involved with the some of the other parents and attended the church. I ferried our children and their friends to the various activities.

My wife made her role of wife and mother her topmost priority and gave her all, often sacrificially, she had high standards. She was a good listener and it was quite usual for me to arrive home to find the pile of ironing still untouched, because she had given several hours to someone in need. I found that difficult, as she was the one needing physical help. But apart from several notable exceptions, there was little of that.

As the rheumatoid activity increased, she became more physically limited and fatigued. It was easy for me to leave for work in the morning and bury myself in my work while she often spent the day lying down. This was the side most people didn’t see. She found the pain and physical limitations were hard to bear and there were frequent outbursts of expression. I found it increasingly painful to watch my wife, my loved one, in so much pain and distress and I felt so horribly helpless. One night when it got so bad I went down on to our beach in the dark and in desperation reached out to God from the depths of my being, imploring Him to help us.

I felt trapped by the illness and restricted, held back. Once, I was asked if I had thought of leaving and I can honestly say that was never ever on the agenda. We married because I loved her and was committed to our marriage. On the other hand I wanted to escape from the illness, I hated what it was doing.

In our search for understanding, we were led over the years along a path of Christian contacts. We learned new marriage communication skills and how to deal with the emotional pain that was bubbling away just below the surface. I also found healing and release from the grief and loss I was experiencing. Our attitudes changed and in particular people were noticing how well my wife was walking and the courageous way she was dealing with her illness.

Then I was diagnosed with chronic fatigue syndrome ME/CFS and I had a new battle to contend with. For the first time I was able to understand first hand what fatigue was like and I benefited from my wife’s experience. The effect this had was to draw us closer together than ever before.

So far as our children are concerned, yes, they did miss out on some things, they can hardly remember their mother well. But I believe the experience has enriched them and we are proud of the way they now handle themselves, their marriages and children.

The last two years have been the most difficult for us, our lives being battered by accidents and illnesses. But in it all we have continued to experience wonderful strengthening and enabling to do what seemed impossible. I don’t know what the future holds, but we know God is with us and the best is yet to come!

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Filed under Christian, Christianity, chronic fatigue, disability, family, healing, health, health & wellness, lifestyle, M.E., personal, relationships, seniors, spiritual

Wheelchair World

tn_wheelchair.jpgMy wife has had rheumatoid arthritis for over thirty years, but has never had a fall until:

During her art class in the village hall, my wife slipped (quite how remains a mystery) and fractured both her femur and elbow. I often wondered what they got up to but didn’t know it was that wild!

When she finally returned home from a long stay in hospital, we made use of a wheelchair for a while. Initially as a back-up in case of need, but for a week or so it became a necessity! This was to be a new challenge for us, especially as I had M.E. my strength was very limited.

This was our first introduction into the world of wheelchairs and in my case that of the ‘pusher!’ Ours was a sturdy but basic, red-painted job kindly loaned by the Red Cross society and folded down (not quite neatly) into the boot of our car. That was the first surprise, it was far heavier than expected, a real hernia-inducer! We also had to become familiar with the procedure to be followed every time we moved the car from one location to another, which in time became second nature …. open car tailgate and lift out chair, expand frame and erect handles, wheel round to the passenger door, (stoop) apply left and right hand brakes, assist passenger to be seated, (stoop) swing out footplates, fold down footplates, adjust foot straps, release brakes and you’re off …!

The first thing I noticed, on a good level surface, we soon gathered speed and there was a feeling of power. That is, until we came upon a patch of gravel when we slithered to a halt as if we were in a highway escape lane. Rough or uneven paving slabs brought me to my senses because the whole rigid contraption became a bone-shaker and brought back memories of Smallweed in Dickens’ Bleak House “Shake me up …!” It was then that I was reminded that I had a passenger, someone who was in some discomfort before we even started.

Any journey had to be carefully planned, taking into account parking, hills, and obstacles and of course my own physical limitations. Thankfully there is often help at hand as passers-by are often only too ready to offer assistance. Like when we entered an unfamiliar country inn for a meal. An assistant sprang to our help and guided us to a table and saw to our every need. Or the time when a young man propelled my wife up a steep slope so she could see the sea view. Real skill is required to negotiate heavy doors with self-closing mechanisms, kerbs, bollards or just ‘people’ and a constant reminder that the first thing to make contact with any obstacle or someone else’s legs are your passenger’s feet!

The next challenge was the supermarket. We had seen couples using a special trolley hooked on to their wheelchair, lovingly enjoying the joint experience of togetherness, carefully choosing their purchases. So we thought we would give it a try. Now perhaps we had the wrong sort of trolley or it was just the wrong day, but it was like trying to steer an eight-wheeled eight-foot long vehicle. Never again!

Thankfully my wife gained strength and became more mobile, but we were really grateful for the wheelchair, because it got us to places that would have been impossible otherwise. But now, whenever I see someone unloading a wheelchair from the back of their car I look with more sympathy and understanding … lift out chair, expand, erect handles, wheel round, apply brakes, assist passenger, swing, fold down, adjust, release brakes ….I have not spoken of the passenger’s view of course, but that’s another story.

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