The Pain and the Presence

Having suffered from chronic fatigue syndrome for a number of years has  given me a just an inkling of what it could be like for someone who has experienced far greater pain than me.

Lying here, Father,
I know You are there.
I don’t feel your Presence, but
I do feel the pain and discomfort
that tries to take over
and invade my fatigued soul.
Every aching muscle and sinew
vying for attention and
threatening to melt away the hope.

But as I look to You,
I know You are with me,
feeling my every feeling.
And as I keep on looking
and looking and looking,
reaching out to You,
minute by hour,
heart to Blessed Heart,
Your love seems to take over,
in a way I don’t understand.
Fear goes out the window,
faith and hope rise
and the pain grows dim
just for now –

My Clifftop Cabin Retreat

An important and significant two weeks.

I had entered my third year with Chronic Fatigue and although there was some improvement, I still experienced considerable physical restriction and the occasional relapse. I felt the urge to get right away on my own for a time. Some friends of ours had a cliff top cabin which became available for a couple of weeks and I jumped at the opportunity. This was the first time I had arranged to spend such a length of time away completely on my own.

At the end of a narrow Cornish lane, I eased open an old wooden gate and fought through overhanging foliage to reach a grassy clearing. Halfway along stood a bungalow. The cedar wood shiplap was bleached white with years of sunlight and salt-laden winds. Cared for, but it had seen better days. On three sides, trees and shrubs affording absolute privacy and seclusion, but allowed magnificent views out to sea.

The interior was very basic and functional, but I had all I needed. After unloading my belongings, I settled into an armchair and looked around. I took note of the thoughtful provision of little extras, like the bowl of fruit and selection of books. I had arrived! This was to be my home, my refuge, for the next ten days. No distracting phone calls, television or radio. Closed off from the world. It was a good feeling. I just sat for ages and feasted on the panoramic ocean view. Passing clouds cast moving shadows over the dappled surface of the sea. A coaster slowly disappeared over the horizon and fishing boats returned to port with the day’s catch.

I decided on an early night and snuggled under my quilt. The cabin didn’t have the luxury of insulation – not ideal for someone with a wonky body thermostat – and I soon woke feeling cold. I piled on extra blankets and pulled on a woolly hat, before trying to settle down again. As I lay there, the sound of the sea had increased to an incessant roar. The Atlantic rollers pounded the length of the bay below. I listened, fascinated, before eventually dozing off.

Next morning, feeling dazed and bleary-eyed, I sat with cornflakes and coffee, contemplating the first day of solitude. I just wanted to ‘be’, Father and I, drawn into intimacy. I needed to hear what He had to say to me, but realised I couldn’t force anything. It would come in His time and His way. I wandered outside and breathed in great gulps of the stiff Atlantic breeze as the gulls circled squawking overhead. It felt like taking in life itself and I wanted it to go on for ever!

The honeymoon period didn’t last however, as by the next morning doubts began to creep in. I was getting restless and began to question what on earth I was doing such a thing for. Perhaps I should call it a day and return home to reality? Thankfully, I dismissed the doubts and fears and pressed on. Sure enough, by the next day a peace began to set in. It’s hard to describe, except to say that I felt settled, stilled inside, at one with Father. Even when I ventured out for a very short walk, my ‘retreat’ went with me. I felt cocooned, set apart.

The following days fell into a sort of routine. Bible reading, listening, writing and journaling and more listening. Whatever thoughts and feelings came to the surface I explored them to see where they would lead. One day an emotional ‘wound’ that had dogged me for years was uncovered, cleansed and healed. As the truth took hold, I became aware of a tremendous sense of freedom and elation. On another, the reality sunk in concerning an important decision I had to make. I just knew what I had to do.

There were no further revelations during the remaining days, just a cementing-in of what I had already heard and received. My wife joined me for the last two days and we revelled in the fresh air and coastal scenery together. All too soon the day of departure arrived.

You Are What You Eat

Those who take food and diet seriously, sometimes quote the phrase, “You are what you eat!” I looked it up and found it originated in the 1800’s or earlier in Europe. The German, “Der Mensch ist, was er ißt.”translates into English as ‘man is what he eats’. Much later in the 1960’s, it was adopted by the champions of healthy eating and is currently the title of a popular TV dieting series.

After I was diagnosed with Chronic Fatigue I looked into diet in some detail, partly because I became intolerant to certain foods. My wife and I tried various recommended diets, but they didn’t seem to produce the promised results and in any case they began to take over our lives and was in danger of becoming a god.

Recently we watched a TV programme about families who were following an extreme raw food diet, omitting all meat, fish, dairy products, eggs, wheat and flour and certain fruits. The food preparation room looked more like a laboratory, rather than a kitchen. They appeared physically healthy, but we were given the impression that it had become the top priority in their lives. A filmed teaching session was shown, that appeared very much like an evangelical Christian service of praise and worship.

So we continue to eat sensibly, buying plenty of fresh fruit and vegetables and keeping fat and sugar to a minimum, plus taking certain vitamin supplements. I still avoid foods that don’t agree with me, although now most of the intolerance seems to have vanished. Having said all this, I admit that whenever diet and exercise is mentioned, I always have that niggling guilt that I am not doing enough!

My top priority however, is taking food of the spiritual variety. I have found that by opening up my life to God and seeking what He says about me personally, is life-changing and healing. When I take in His Word and inwardly digest it, it has an amazing freeing spiritual, emotional and physical effect. It reaches the inner parts that other foods just cannot reach.

I think however, that many of us would rather pop pills, follow a diet or even take part in a sponsored walk across the Mongolian Desert, than allow God to show us what is going on inside and heal us. It can be just too scary to let the hurting recesses of our hearts be exposed. The truth is that He is very gentle and we can trust Him.

I continue to enjoy my food and follow a balanced diet, physical and spiritual – I am still learning.

It’s Under My Nose

I am light years away from the busyness and activity that was my world before I was laid low and diagnosed with CFS/ME! Gone are the ‘badges’ I used to wear and polish with pride: ‘engineer’, ‘manager’, ‘chairman of trustees’, ‘counsellor’, ‘prayer minister’, ‘regional leader’, ‘mountain climber’.

The only badge I have now is ‘beloved of Jesus.’ My favourite Bible character then, was Elijah strutting his stuff on the top of Mount Carmel. A more appropriate personality now, would be Amos, sitting under a fruit tree keeping an eye on his sheep.

This is one of my oil paintings. It’s of the source of the River Derwent in the Peak National Park of England. On one of those sort-after sorties into the wilderness. I followed the river as a stream, winding round higher and higher through the moorland heights. The sides of the valley were splashed in heather in bloom and the banks of the tiny stream rippling between banks covered in vivid green moss. A beautiful stimulating scene, it still stirs me when I look at it.

I have since had to learn new ways, working with ‘what is!’. No more assaults on moorland crags and traversing mountain ridges to complete a challenge. I have become content with a few hundred yards gentle amble – at the most, on the flat, with the wind behind me, on a good day – just to ‘be’ and taking in what is close to. There wasn’t time before, I was in too much of a rush. I now appreciate what is ‘under my nose’ so to speak. This was what my heart longed for, what my soul was crying our for. Be still and take it in. The blackthorn blossom on stark black branches, the kestrel poised for the attack, the early powdery willow catkins shaking in the breeze.

I have found that there is life in the solitude. A change from ‘head’ to ‘heart’. Much-needed time for relationship, first with Father, then my wife and family and the occasional friend. To stop and listen and consider.

The transition between the two worlds was hard, even painful, devastating, and at first most unfair. It was like being catapulted into the unknown. The way forward through the fog was only indicated by a signpost with one word, ‘God!’ I am so glad that I was given the grace to go this way.

But note: there came a time for Amos to go in obedience and deliver his message.

It’s Lonely In Here

I was catapulted into chronic fatigue after a feeling of loneliness that defied a human solution or change of situation. It was a most painful emotion of abandonment, as if I was the only person in the whole world. Whereas before I was aware of the presence of God, it felt He had gone. This was my own Dark Night of the Soul. I knew I had to trust Him to take me through the chasm of pain to the other side and that He did over a period of several months.

 

It’s lonely in here, very, very lonely
as if I’m the only person
in the whole wide world
and I’m frightened and hurting
I feel so helpless
I want to go back to how it was before, but I can’t
I want to escape, to run away.

Where are you God?
You seem so far away!
Why have you left me all alone?

In reality he is close
not the feeling, but the real thing
Jesus kneeling at my feet
“What would you have me do for you?”
What a God! at my feet!
Waiting patiently for the word
Waiting, waiting…
Yes, yes Lord, but .. but I need a lifeline
but yes, yes Lord, yes!

And as the yes’s and the trusting grew
and except for the odd backward glance
the journey entered upon
standing empty in the barren desert
feeling the feelings with Him
I remind myself
he will not let me down
he will not let me be tempted more than I can bear
and …

as my eyes become accustomed to the darkness
I find beauty to behold
diamonds and precious stones
hidden behind the pain
memories that heal and not hinder
heart to blessed heart
words of love
the pain starts to lift
and the anxieties start to melt away

Until the time when I feel His embrace
and do you know
it can actually hurt to be loved
but Lord don’t stop

Is this the end
no, it’s just the beginning.

The Fog of Fatigue

I found one of the most horrible symptoms of CFS/ME, is what I call the fog of fatigue. To have aching and painful muscles and joints with little energy is bad enough, but it seems cruel that the fatigue creeps like a mist into the head as well. It felt like part of me had got left behind somewhere and was accompanied by feelings that I was growing old before my time.

At it’s worst my thinking became dulled and my short term memory would suddenly go. A reminder of the times when I had nodded off in the middle of a business meeting and was jerked to attention by being asked a question. Similarly, I would use all sorts of ploys to get round the problem. That was another aspect; I looked normal and healthy enough, but the cloud within had the effect of partially separating me from others.

Slowly I came to the conclusion that I needed this. My mind needed rest, so not to fight it, but try and go with the flow. Things wouldn’t fall apart if I had a fogged mind, in fact it was the way forward for me for a time.

The depth of fog fluctuated and could go on for days and weeks on end. Occasionally, as the fatigue lessened and I headed for recovery, the cloud would lift for a few hours or a whole day. My mind became icicle sharp and I could think straight. At first, the release and relief was such that I would cry with the joy of it – it was like being in heaven. The next day though everything turned back to ‘normal!’.

The most challenging aspect for me was that this fog interfered with prayer, which is my lifeline from God, my love source. I had to learn new ways of maintaining this relationship, which continue now even though the fatigue is less. Just to sit quietly, accepting in faith that Father is with me, even in me, is one of the most basic and powerful ways of prayer. As I surrender to Him there is a heart to heart bonding without words. I have even found that after an hour or so, tiredness and fatigue begin to diminish. Powerful stuff.

The other side of the coin is that fatigue has a way of slowing down the mental processes and can result in lethargy. Dare I say it, but it is even possible to accept the fatigued state as normal! So as a part of the recovery process, I find a need to be more disciplined, sharpen up and learn new ways. Not just in prayer and bible reading, but in my whole approach to life and the daily routine, because there is truth in the saying, “Use it or lose it!”

Not easy. It can seem like a hard battle at times, but not to forget that God is readily available. He’s on our side!

Does God Heal Chronic Fatigue?

Divine Healing has been the subject of many books, periodicals, journals and essays and written from the whole gamut of viewpoints. I am not even attempting to go into this, I leave that to the theologians and biblical scholars. But with my wife suffering from an incurable chronic illness and then I am diagnosed with chronic fatigue syndrome – CFS/ME/CFIDS – with no complete medical cure, it sharpens things up and makes things much more personal. With my ‘back to the wall’ I have been desperate for answers and I looked to God for the solution.

I’ve been a Christian for many years. For some of the time I have struggled and have even been rebellious, especially in situations where it felt like I was being dragged by my hair through a hedge backwards. Even so, I have long believed in a God who heals. The Bible tells me so and this has been born out by what I have seen for myself. I have witnessed others being healed instantly and also experienced minor and gradual examples within our family.

I have long believed that healing was all part of the ‘salvation package.’ But I came to accept that you can’t receive the gift without receiving the Giver, and He has an interest in the whole of me – body, soul and spirit – He doesn’t split me up into compartments. I would love an immediate miraculous release and have been prayed for a number of times, but I believe that on the whole it is a gradual process, a journey of love. Right from the start, once I had tasted that love, I longed for more, it was something I needed. However, even though it comes without price, it costs and takes all I have.

If there was some wonder pill or food that I could take for an instant cure, I would probably be the first in line for it. I’ve always been the one to look for the quick escape. But circumstances have forced me to go ‘through’ and not hide from the difficult issues, emotional pain and troublesome memories long swept under the carpet where they fester away. As I have learned to face these things with Father, I have realised a greater degree of personal freedom and gradual emotional and physical healing.

I feel that many physical illnesses, especially auto-immune conditions like chronic fatigue can have an emotional and spiritual root cause and dealing with these is at least part of the solution. This doesn’t mean that I discount lifestyle issues, eating sensibly and carefully or even taking vitamin supplements. I have tried following a rigid diet regime, but this did not show results and tended to take over my life. Anything that can threaten to take over the love relationship that I am totally committed to, I am wary of.

So I am on the way and I am changing. I just cannot tell God how or when He is to heal me of course. If Jesus can restore a man’s hearing by spitting on his tongue and another’s sight by rubbing mud in his eyes, I need to be open to what He sends my way. I am expectant for more, much more. Some of the symptoms have gone and I am stronger. I still long to be fully healed, whatever that means, but I trust Father who knows what he is doing. I have a greater longing that has become my life.

My Top Fatigue Tips

I humbly present a few random tips, that I have found helpful in dealing with chronic fatigue. It’s by no means an exhaustive list, I can think of others.

 

You may have a lot more, so if I receive any I will add them to the list.

So here goes:

• Don’t over stretch yourself. This may sound obvious, but I found that on days when I felt a bit more energetic I could get carried away with what I was achieving only to pay for it with extra fatigue for days to come. The 75% rule is a good one. Only use up 75% of your available energy. Easier said than done, but it does work

• Pace yourself. Don’t try and copy what worked yesterday or even last week, but do what you feel happy and comfortable with. Take the long view. There will be ups and downs, but the tiny gains as you push out the boundaries add up over time. Go with the flow, it’s a lot less stress free.

• Rest is essential. I don’t mean just sitting down and reading, but a complete switch off from activity. Gentle music is good or anything that works for you and helps you to ‘centre down!’ I find meditation is very helpful. By that I don’t mean anything fancy or complicated, nor is it an emptying of the mind. As a Christian I often sit quietly, just being with Father God and allowing His peace to descend. That’s meditation at it’s most basic and powerful.

• Find the right balance. Alternate short periods of physical activity with rest, then mental activity, then more rest and so on. Head work can be just as tiring and energy-sapping as physical.

• Have objectives. Each day, decide to do one thing that is enjoyable and one thing that you don’t look forward to doing. No matter how small these are, the achievement works wonders for your confidence.

• Wear appropriate clothing. Again this may sound so elementary, but I often get so engrossed in what I am doing that I forget that my body temperature is dropping or overheating. This in turn can cause fatigue. So wear layers of clothes than can be easily taken off or on.

• Keep a journal. I have found this most helpful for at least three reasons. As a diary listing in some detail what I had done each day; this would give me some understanding of where I was going. As a prayer journal recording God’s dealing with me and my response. I found it very encouraging to look back on past months and see the progress. And also as a means of expression to help me get in touch with feelings and what my heart was saying.

• Get to know yourself. Our emotional and spiritual needs are very important and are often the key to moving forward. So be aware of how you are feeling, take ownership of those emotions and try to deal with them before you drop into despondency. Guard your thought life. It’s so easy for thoughts of hopelessness, fear and failure etc. to drop into our minds and pull us down and discourage us. We need to recognise these and replace them with the positive healing reality without delay.

• Be kind to yourself. Don’t pressure yourself to achieve more than is possible and forgive yourself when you fail. Encourage yourself because few others may do so.

• Find support. I have a tremendous advantage and blessing of an understanding wife and I cannot overestimate the value of this. CFS can be very isolating, so it’s good to have someone outside of family if to be with now and again. Not someone to fix things, but just to ‘be’ together! That may be hard to find. but it has been possible for me when the need was greatest. The practical help needed will vary enormously from person to person. I have found it hard to learn to ask.

• I have left this last one to the end, because it embraces all of them. I just don’t know how I could make all this work without a close relationship with God to guide and empower. It’s not about following a procedure, but about a relationship and that makes all the difference.

Chronic Fatigue and Family

My 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!

Knight in Shining Armour?

Do you have a picture in your mind how you see yourself? Perhaps as a child you dreamed how you would like to be, or has it got dulled by life’s cares and covered over by years of everyday routine?

This is a boyhood image of one aspect of me, that began to be re-awakened in latter years. It’s a picture I hold in my heart of a chivalrous knight in shining armour, who slays dragons and rescues damsels in distress. Not always like that I can assure you. There have been many times when I have crept into a cave and licked my wounds.

I believe however that it is a godly scriptural image, how God would have me be. The difference is, that the battle is not against people but against the enemy’s arrows that often fly thick and fast. I’m learning to fend off the lies and taunts such as “You will never make it,” or “It’s hopeless,” or “Just lie down and give in,” or “Who do you think you are?” The other difference is of course, that I don’t have to be strong. I may be weak, but God has all the strength I need. That is a real eye-opener, it’s life-changing! So I may have chronic fatigue, but I am determined that the illness will not have me!

Don’t Take It Lying Down!

Accepting that we have a chronic illness is absolutely key to moving forward. It took me a long time to stop struggling and surrender to God and seek His way in it. This is vital, but does not mean that I am totally resigned to it being my lot and have to stay this way. I have to give over, not give in.

There is another side of the coin in that “I don’t take it lying down.” This is an attitude that has a determination not to give in. It seeks to win through, push out the boundaries and regain lost ground, even if it is in tiny steps at a time.

To experience absolute fatigue in every part of your body is a horrible thing. Especially just when you think you are making progress in recovery and you go into yet another relapse. It’s like starting all over again! It feels oppressive, like someone or something is controlling or dominating your life. I found it was so easy to get into the way of thinking that I was a victim, powerless to do anything and even wallow in self pity.

I believe this sort of victim attitude stemmed from right back in my early childhood, but perhaps was reinforced by certain religious teachings that are still lingering in some churches today. I mean the sort of thinking that is influenced by the ancient monastic practices of self-flagellation and wearing hair shirts. This was a mentality and mindset in me that had to change.

These two sides of the coin, surrender and a determination to win through, go together, within a close love relationship with God. This for me has entailed the healing of emotional wounds and release from attachments that have disabled and held me back. I’ve also had to change my thinking to how God says He sees me. It ranges from knowing in my heart that I am loved just like a baby at it’s mother’s breast, to knowing in my experience that I am ‘more than a conqueror!’

I am in recovery but still have the occasional relapse and so the journey continues. When I do get knocked down I am not so slow in picking myself up, dusting myself off and carrying on. As I lean on God I am learning in amazement what can really be achieved in His strength.

Job and Chronic Fatigue

I was never comfortable reading the Book of Job and the message about suffering. I explained it away by saying it was old fashioned – like this picture of him and his friends, it’s not my style – and had been superseded by Jesus Christ on the cross. My stance was that it was no longer relevant to us today and that thinking was placed in a box, tied with string and hidden away. Deep down though, I was not entirely convinced.

It was when I became a chronic fatigue sufferer, that I had to look at Job afresh and change my thinking.

The enemy dealt a devastating blow to Job, who lost all that was precious to him. He constantly questioned God in an honest search for truth. He just didn’t understand where he had gone wrong. But in all that he did not lose his integrity and he did not deny God. Furthermore his friends were no help, but after he prayed for them he was reinstated. God even gave him twice as much as he had before.

I have not suffered like Job, but in my devastation I did seek answers from God to understand what was happening. I questioned because I honestly wanted to know what God was saying to me in the situation. I believe that was right, but if the questioning turns into complaining, that’s another thing.

I admit that when the discomfort or pain was great, I did complain at times. After all it is only natural when we are in distress. My attitude was bordering on saying something like, “You don’t know what you are doing God, and I don’t trust You!” A defining point came when I was at a low point, fatigue had been high for weeks on end and I wondered how much more I could take. It shook me to realise that I was angry with God for allowing this to continue.

Eventually a time came when questioning and complaining had to stop and I surrendered to God in complete trust. I had received God’s Word that He would heal me and I believed He would do what he said He would do, in His way and His time. It pained me to realise just how long this surrender process had taken. It seemed like wasted time.

I didn’t lose as much as Job, but I did lose what I considered very important and dear to me. Those things gave me standing and a reputation. I’ve lost the reputation and become a nobody, but my testimony of God working in my life is intact.

Most of my friends were involved with my activity and gradually drifted away when that stopped. I felt some of them have let me down, but I have forgiven them and pray for them. I have been partially healed and I am expectant for the rest. I believe I will get back what has been taken from me, but I realise that things will never be the same as before.

I am moving forward and the best is yet to come.

Thank You for Chronic Fatigue

Please do not misunderstand me. Chronic fatigue, ME/CFS/CIFDS is a horrible illness and I would not wish it on anybody. I found it devastating at first. In trying to find a way through the illness, I have experienced a whole gamut of emotion; loneliness, anger, helplessness, anguish, grief, including some feelings I didn’t think I had and I’m sure there’s more to come.

However, in looking back, I can now honestly say ‘thank you for chronic fatigue!’ By this I could be implying that God gave me the disease which He certainly did not! But He did allow it or He would have stopped it. He gives me free will, I’m not a puppet on a string. I’m quite sure that to some extent I brought the illness upon myself, because of my adrenalin-fuelled lifestyle. Whereas I don’t minimise the effect of my current difficulties and restrictions, there is a growing underlying gratitude within me because of the benefits. Benefits, that I just do not think would have happened outside the illness.

These are some of them:

• Our marriage has benefited and there is a greater understanding between us. My wife and I have more time for each other and are closer together than we ever have been.
• I believe I have grown closer to God and learned, in my weakness to lean more on Him for strength and enabling. I have become more dependant upon God.
• My creativity has developed, especially in writing, painting and photography.
• I have learned more about myself and who I really am in Christ. Also, and this is hard to explain, but God has done something ‘concrete’ inside me.
• In the darkness, discomfort and pain I have discovered and experienced surprising blessings that I never would have otherwise.
• I am learning to ‘flow’ and pace myself, which uses far less energy. I have developed new ways and am more of a human being than a human ‘doing!’
• I can more easily tune in and identify with others who are experiencing brokenness, hardship and disability.
• I have experienced a degree of physical, emotional and spiritual healing and several emotional hang-ups have gone. Also, and this is hard to explain, but God has done something ‘concrete’ inside me. I am expectant for more.
• I am much clearer as to my real purpose in being alive and feel more prepared for the next phase in my life.

The challenging and sometimes scary journey continues.

A Surprise Victory

I sat in a deserted seaside parking lot. My wife was taking part in a reunion and I was left to my own devices. I was in to my second year with CFS, my fatigue level was average to high – at least three out of a maximum five – and I wondered what I had the strength to do?

I eased myself out of the car, slowly crossed the road and was transfixed by this ‘jewel!’ A large lake or ‘mere’ – as they say in those parts – nearly a mile long, tree-fringed with an island in the centre. The unbroken mirrored surface shimmered in the early autumn sunshine, inviting, everywhere quiet, not a soul about. Tidily moored up to a deserted jetty, old traditional clinker-built rowing boats, just waiting to be taken out.

I have a love of boats and water, ever since my father taught me to row on our local river as a boy, so my heart longed to be out there. But my head doubted whether rowing was the right action for a fatigued body. I paced back and forth debating and my heart won. A surly young man untied my selected craft and I cast off.

Gently, ever so gently, so as to make the least claim on my limited energy, I dipped the oars in now and again to gain momentum as we slid away from land. Resisting the temptation to pull with force, I continued at an almost effortless pace, feathering my oars on the return stroke like a professional.

After a few minutes I shipped the oars and listened. I, man and boy, enthralled with the experience! You could almost hear the silence, which was only broken by a flock of coots. Reluctantly I made to return, but took my time, determined to squeeze every ounce of enjoyment out of the half-hour hire.

It’s hard to explain to someone with normal energy what that experience meant to me. But I stepped out of the boat as if I was Captain Horatio Hornblower or Captain ‘lucky’ Jack Aubrey himself – of “Captain and Commander” fame – to the applause of the gathered crowds. It was a brilliant victory! “I’m proud of you son!”

Back in the car I was full of gratitude towards God, for arranging and enabling. Yes, I did suffer a minor relapse for a two or three weeks afterwards. Not sure whether it was the rowing or something else, but it didn’t matter. No one can take that achievement and memory away from me.

My Name is Chronic Fatigue

It was suggested I write this as if it was ‘Chronic Fatigue’, the illness speaking.

My name is Chronic Fatigue although some call me ME, I like that.

I’m your constant companion. I’m always with you and want your full attention. You see, I like to be centre stage. I’ve sapped your energy and weakened your muscles, so that you can’t work properly or enjoy the things you used to. Like going on walks with friends and social activities and things normal people do. There were times when you even thought you would end up in a wheelchair. I’ve watched some of your friends fall away, one by one, because they didn’t understand that you couldn’t keep up with them.

You are getting to know me quite well although I’ve plenty of tricks up my sleeve to get you puzzled. But others don’t understand me, even your doctor doesn’t know what to do for you, except offer pills to ease the pain. You’ve tried extra vitamins, diets and exercise regimes and they didn’t do any good.

I really don’t like it though, when you ignore me, but I have special ways of getting your attention. At the end of the day when your head is aching and every muscle in your body hurts, I whisper sweet nothings in your ear, like “It’s helpless!” or “You’ll never get through!” or “No one cares!” In the night I make my presence known so you don’t get much sleep. If you do drift off I sometimes wake you up drenched in perspiration and feeling chilled, so you wonder what’s happening. Just for good measure, when you do get out of bed, I fog your mind so you can’t think straight and forget things. My speciality is to knock out your temperature control – you call it your thermostat – so you feel you are either going to boil over or freeze to death.

I do worry at times when you start to get stronger and think you are getting better. I have to come in then with a big surprise and knock you down, so you are right back to the beginning again. That throws you, I’ve even heard you cry. The problem is you don’t take it lying down. You get up and start over.

Some people think I’m a control freak, but that’s not true. I just like to be in charge.

I want you for myself and so you feel lonely and afraid. I don’t like it when you spend time with others who know me, I can see that helps you. What I really hate is when you talk to this special friend of yours. I don’t know who he is, I’ve never seen him, but you call him “God!” or “Father” or other names like that. He seems to make you happy and contented. Even when you are very fatigued and weak you seem to have some sort of energy inside. It’s strange, because you get some strength from him to do things that you thought impossible. I really don’t understand that and it leaves me feeling left out and powerless.

So I’ll just bide my time. There must be a way to win this battle.