A Twinge of Envy?

If 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

I’m Still Learning

For my wife to be given a ‘sentence’ of an aggressive and disabling form of rheumatoid arthritis certainly wasn’t on our agenda when we married. Neither did I expect to be diagnosed with chronic fatigue syndrome (M.E.) not long after taking early retirement. These chronic illnesses changed the direction of our lives for ever, but although they were the cause of much grief and struggle, we have so very much to be thankful for and strangely, I wouldn’t have it any other way. It has been a life-changing experience so far and this continues – we are still learning. What I personally have learnt and am still learning was on my mind today and these are just a few thoughts:

1. Fun. There are times when I have to remind myself not to take life too seriously and find time for fun. Yes FUN! It helps to have a sense of humour. Mine gets buried at times and I need to let it out and even take the risk of offending some.

The Thirty Nine Steps

My wife is the Guest Blogger this week and writes about living with an illness long term:

The Thirty Nine Steps

We really welcomed our move to Cornwall. There had been some delay. We headed an ever-growing chain of interested buyers, so made the decision to arrange a bridging loan. It was risky, but John had to start his new job. We were separated for a time, but eventually moved on 5th November 1972 in the rain.

Our children – six and three – thought our new house was great, with bedrooms downstairs built into the hillside and 39 steps up to the front door. They ran up and down and in and out excitably. The beach was just down the road – a new adventure to be lived.

Carer or Sharer

This is a personal account of how I have lived with chronic illness for over thirty years and how it has been used to change my life. A husband’s viewpoint.

My wife was a real carer. It was part of her make-up. She would have made a good nurse, but gave herself sacrificially to being a mother, wife and home-maker.

After about nine years of marriage we moved to the Cornish coast because of my work. To live by the sea was like a dream come true. We saw it as a new start. Within the first year however, things began to go wrong.

My wife was already experiencing pain in her feet and not long after arrival, she was diagnosed with chronic rheumatoid arthritis, a progressive and disabling autoimmune disease. This ‘sentence’ came as a shock for her and she was quickly admitted to a hospital in Bath for three weeks specialist treatment. Within days of returning home however, she had news of her mother’s deteriorating health and travelled up country to see her. Her mother had painfully struggled for years with rheumatoid arthritis and it was our plan for her to come and live with us, once we had settled in and prepared a room for her.  Unfortunately this wasn’t to be, as she passed away ten days later.

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.

Wheelchair World

My 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.