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!

Writing With Father

I have kept a diary for many years. It all started when I read a biography of Pope John 23 based upon his diary. Not that I am of his persuasion, but I thought if it was good for him, so it might work for me. At first it was just a few jottings of anything that grabbed my attention, but over the years it developed into more of a prayer journal.

At it’s most basic it has been a diary listing in some detail what I have done each day; this would give me some understanding of where I was heading. I found it particularly helpful after I was diagnosed with chronic fatigue, in keeping a check on my progress in physical activity. I’ve also used it as a record of God’s dealing with me and what I have been shown through scripture and in other ways. I have found it very encouraging to look back on past months and see the progress made. I can write anywhere with a notepad to hand, but most of the time it’s when I am sitting at my computer.

Sometimes there’s a need to write more extensively and expressively. Usually when there have been issues or events on my mind or thoughts that keep recurring. This is where writing comes into it’s own. Once I am comfortable and assured of the presence of Jesus, I begin. I write about the happenings in detail, almost like painting a picture with words, leaving nothing out. I just let the writing flow, without worrying about grammar or spelling. I write as it comes – this is for no one else but myself. It may link into past events, in which case I just go with it and see where it leads. As I get in touch with feelings, I describe them and see where they are coming from. I write what my heart is saying.

I am aware that I am writing with Father, so it is at this stage that I may pause to see if He has an input. I may be led to a scripture or words may come to me. By this time my voice will have taken over from my pen or I may have just lapsed into a meaningful prayerful silence.

I have found this kind of writing can be very powerful, freeing and healing, but I don’t want to give the impression that it’s like this every time. Also my handwriting is so bad that I mostly use a computer. The free journal software I use – Here – is so easy to use and helps to keep me organised with dates, prayer lists and bible quotes etc..

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!