Monthly Archives: January 2008

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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Filed under disability, family, lifestyle, personal, retirement

Gifts Rediscovered

tn_quay-large.jpgWhen I was slowed right down with fatigue, there were activities that brought me real satisfaction that I didn’t have the strength to do any more.

I had to let them go and find new things. One of those was the rediscovery of my gift of painting.

I had two art teachers at school and they both put me off. In junior school I accidentally tipped over my water pot and the teacher caned me in front of the whole class. In the next school the art master was a tyrant and intimidated us rather than encouraged. This left me believing I just could not do art.

It was years later when a colleague and I attended an evening class for portraiture in oils, that my eyes were opened. Our tutor was not just a good artist, he tuned in with us and was very encouraging. He told me that I had taken to painting “like a duck to water!”

Painting was put on hold for a few years because of family, work pressures and general busyness, until I looked in at a local art gallery. I was fascinated by the landscapes on show and thought to myself “I could do that!” I had a go and I did. Eventually I even exhibited at the same gallery.

The painting above was a first for several reasons. The first time I’d done inland water or boats or architecture. It was too big for our home – it’s four feet long – so it’s now hanging in our local hospital.

This probably wouldn’t have happened without the encouragement or without the illness.

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God Can Do It Without Me

tn_windsurfer2.jpgHow I came to the end of my rope and sailed away.

In the early days after I contracted Myalgic Encephalomyelitis – chronic fatigue syndrome – the fatigue and other symptoms were at their highest. I was struggling to make sense of what was happening. It was most unpleasant, if not frightening, suddenly to feel helpless after I had been so active. So one morning I decided to drive round to a local beauty spot, thinking a change of scenery would help. It was there where I was taught an important lesson.

I was parked on the side of a reservoir looking down on the expanse of water. The moorland hills served as a stunning backdrop to the inviting scene. Normally I would have donned my boots and ambled around the lake perimeter. However, my walking was confined to barely a hundred yards, so I had to be content with watching the windsurfers practising their manoeuvres. There were quite a few out there, taking advantage of the stiff breeze.

I sat in considerable discomfort, feeling very flat and helpless. How was I going to get out of the mess I was in? I had so little strength and my senses were dulled such that it was difficult to concentrate to pray. How could God act, if I was so helpless? How could I get moving? I reached out from my heart to Father through a fog of fatigue. God seemed miles away. I asked that somehow He would connect with me in a way that I could receive. At that moment one of the windsurfers, probably a learner, got into difficulties and his sail fell flat in the water. He remained upright, and calmly pulled on the rope, lifted up the sail, held the mast to himself, and sped away across the lake at a vast rate of knots.

The significance of this was immediate and obvious. I was being reminded that so long as I put my trust in Father God He would hold me to Himself. Even though nothing seemed to be happening, I would move faster than anything I could achieve in my strength. In other words, with ‘me’ out of the way, God would be enabled, free to act, all to my benefit. I knew God had brought me through hard times before, even carried me. My wife and I had known his provision and enabling in wonderful ways, but for me this was something else, this was uncharted territory!

I returned home with renewed purpose. Something inside of me had ‘clicked’ that day! My strength and capabilities had been considerably limited – temporarily at least – so that I could realise His tremendous unlimited strength.

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

How Are You?

tn_how-are-you.jpgWhen I was diagnosed with M.E. I was thrust into another world – challenging and scary. I was looking to God for the way forward. I knew He understood, but I wanted someone with ‘flesh on!’ to share my experience with. I am really blessed with an understanding wife, but I would have liked someone outside of family to listen.

If I met someone and was given more than the usual greeting and was actually asked “How are you?” I would often make the mistake of thinking they really wanted to know, so I’d tell them! There were notable exceptions, but often it was when eyes began to glaze over, that I realised I’d gone too far, and wished I hadn’t spoken.

Some even took the initiative and told me how well I was looking. “You do look well!” That left me wondering, what on earth I looked like before? I felt I was being kept at arms length, possibly because they couldn’t handle it. So I would thank God that I looked good, but inside I felt alone in my struggle.

I recognised this sort of talk of course, because I was just the same. I liked to think I knew better, but in actuality I was no different. In my ‘busyness’ and indifference I’d say similar things to stay aloof. The reality was that I was also keeping God at a distance to some extent. This surprised me, because I believed in a God who knew all about me and had all the answers. More than that, Father God was there for me with open arms to comfort and heal.

My response to Father’s open invitation was to reach out to Him daily, often in silence through a ‘fog’ of fatigue, but also sometimes in a flow of released expression. I was also learning more and more, to ‘nestle and not wrestle!’ What touched me so deeply, was the realisation that He not only understood, but that He actually felt my pain.

From time to time there would be an added bonus, often coming completely out of the blue. Two people tuning in, gelling together for that moment, precious sharing. They were times to be treasured.

The journey has had its ups and downs, and continues today. But I can look back over the last few years however and see where I have come from. The difference is, that although I have an illness, it does not have me! More importantly I know much more that I am understood and am learning to live with other people’s misunderstandings. Perhaps, little by little, I am beginning to put ‘me’ out of the picture and seek to understand, rather than be understood. I have also come to realise that I can only give out to the degree that I have received, otherwise I am in danger of giving out empty words.

One day I may even measure up to the prayer of Saint Francis: “O Lord …. grant that I may not so much seek to be consoled as to console; to be understood as to understand …”

I would now like to ask “How are you?”

PS: Don’t forget to read my ‘About’ page – see sidebar.

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Filed under Christian, Christianity, chronic fatigue, family, healing, health, health & wellness, illness, personal, relationships, Uncategorized

It’s Really Real!

tn_stagnant-pool-cromford.jpgMany are of the opinion, including some in the medical profession, that M.E is all in the mind. All you have to do is pull your socks up and get on with life. I used to think a bit like that, until I experienced the illness first hand. I then discovered that the physical symptoms are real enough. Some say it’s like having ‘flu all the time, but it’s more than that.

Even after mild exercise and without warning, fatigue can set in. Not just tiredness, it goes far beyond that, it takes over and affects the whole body. Also the brain is fogged affecting concentration. At worst I would be laid up and have to go extremely carefully for a week or so before I could venture into anything physical.

Faulty body temperature regulation is a problem. I sometimes describe it by saying that “my thermostat is faulty!” Even a minute or so of cold wind could catapult me into deep chill, taking up to two days for my body temperature to recover, during which time I would be wrapped in layers of clothes. Alternatively if I got over warm I could go “on the boil.” Abrupt changes in outside temperature or humidity affects sleep affect sleep and I can wake in the night bathed in perspiration. So disturbed sleep patterns mean waking tired.

I would experience muscle pain, even after light exercise, depending upon the muscle group involved. Alternatively muscles can ache if they lack exercise, the secret is to determine which.

Some people still call M.E. a depressive illness but this is not correct. I feel down sometimes when fatigue is at it’s highest – this was especially sop in the early days, but I was never in a state of depression.

Other symptoms I experienced in the early days, included nausea, breathlessness, headaches, abdominal discomfort and digestive problems and allergy to certain foods. These have long vanished, the others are much reduced and fatigue is less severe now, but I still have to live within a restriction.

You may have wondered what the image above is. It’s a photo of algae growth on the surface of a stagnant pond.

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Where Do I Go From Here?

I returnedtn_where-do-we-go-from-here.jpg from the doctor’s feeling I had been given a prison sentence. Apart from the usual childhood illnesses and the occasional cold, I had never known illness before. Now I was told I had a chronic illness and I had questions.

I flicked through the thin leaflet concerning M.E. and chronic fatigue, I had been given at the surgery. It didn’t seem to be much help, but I phoned a helpline number they gave. The helper the other end went straight into her spiel, saying it’s not all doom and gloom and I could even get married and had I applied for disability benefit. After several minutes I thanked her, excused myself and rang off. I’m sure it’s a help to some, but not for me.

Slowly, bit by bit I gathered together tidbits of information and trawled the internet. There were masses of websites concerning every kind of wonder diet, but I did find some advice on how to cope practically, which was helpful. Uppermost in my mind at that stage though, was to get out of the situation. I wanted a cure, but that didn’t seem to be on the cards.

There were several people locally, who I knew had the illness long term. They had developed there own way of coping within the considerable restriction. I spoke with two Christian friends who were in recovery from M.E.. I wasn’t over encouraged by the fact they’d suffered the illness for a number of years, but they were both prayerful people and I valued their input.

What was becoming clear to me, was that no two people are the same and it is more about you than the illness. The way forward was going to be tailor-made for me. More than anything I wanted to know what God was saying to me about it. So started a journey of discovery.

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