Tag Archives: chronic illness

Putting Away Childish Ways

ice-cream-2As it was school’s half term last week, we had the company of our grandchildren all week. Three delightful little girls, each one quite different and a credit to their parents who sacrificially go to great lengths in bringing them up and teaching them what is right.

They are already forming their own opinions and it’s particularly at mealtimes when their individual likes and dislikes came to the fore. ‘I don’t eat cheese’ and ‘I only drink apple juice’, etc. Continue reading

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Are You Sitting Too Comfortably?

If someone had said to me over the last few years, I was lethargic and lazy and must pull myself together, I would probably have felt like hitting them. As a good Christian, I would of course restrain myself? Some may have thought it but kept quiet. The fact is, you just don’t say that sort of thing to someone with chronic fatigue syndrome – CFS/CFIDS/ME – or a similar chronic illness. Right now however, there is some truth in the statement.

It took quite a while for me to learn to be kind to myself. After all it was probably because of the lack of that, because I was pushing myself, that was one of the contributing factors to the illness in the first place. But there is a difference between looking after yourself and over indulgent comfort. I found that the years of fatigue can have a dulling, if not soporific effect upon the mind and body and it is possible to develop ‘lazy’ habits and attitudes that can become the norm.

Now that I am in recovery – by that I mean most of the peripheral symptoms have long gone and the levels of fatigue are much lower – there is a need to sharpen up. I am keen therefore to recover that which has been lost. I don’t mean that I can go back to how it was. No more mountain climbing – possibly? I have let go of what was and have to go forward into the new things and ways and recovery is a process of discovering what these are. One thing is for sure. They will not be handed to me on a plate. That means taking action. No matter how seemingly small and insignificant, any action can be powerful. I am discovering over and over, what can be achieved with God’s help and strength, with very little physical effort upon my part. Something I needed to learn long ago!

I still have to be kind to myself, but things such as falling asleep in front of the TV of an evening or eating just too much, must stop. Any lazy habits that have been picked up must change. Just as muscles that have atrophied must be carefully and slowly brought back to life – and that can be painful – so the mind needs to be exercised and sharpened.

I looked up the dictionary meaning of comfort: “The act of consoling: giving relief in affliction:receiving moral or emotional strength: to make physically comfortable: a state of ease and satisfaction of bodily wants, with freedom from pain and anxiety:” I have also discovered that there is no real comfort that can rival that which comes from God. Any other comfort addictions such as sex, drink, chocolate, food, warmth, sleep, television or any other distraction are just a pale shadow of the real thing.

So, forward with changed attitude, sometimes with difficulty, but with God all things are possible!

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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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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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