Romans 3

(I’m taking part in a Twitter Bible reading group covering Romans to Revelation over the second half of 2014. Today (July 16th) is Romans 3, and I have too many thoughts simply to share via Twitter. All Bible quotations are from the New Living Translation, 2nd edition.)

There’s a lot going on in this chapter; Paul is making an argument for the Gospel, the Christian faith, and it’s worth spending a bit of time on the steps leading to this. So this post is a bit longer than my usual ones – sorry!

Verses 1-4

This chapter starts with an interesting question, and I want to explore the answer a bit more than Paul does here. In chapter 2, he says that God judges impartially, rewarding the good and punishing the evil, for both Jews and non-Jews (Greeks / Gentiles) – in other words, regardless of national or religious identity. He also notes that Gentiles may do what the (Jewish) law requires (i.e. in terms of doing good), without sharing the Jewish religion.

So he asks, quite reasonably, “what’s the advantage of being a Jew?” (v1). Or, as we might put it today, if it is possible to be good without religion, why be religious? Paul’s answer is that “the Jews were entrusted with the whole revelation [or, “the oracles”] of God” (v2).

In theological language, you could say that this constitutes a ‘special revelation’ to add greater depth to the ‘general revelation’ of God in the universe, which Paul describes in 1:19-20. By observing the universe, it may be possible to infer the existence of God, but what is God like? and what does that mean for us?

My understanding is that religious beliefs, practices, and experience help us to know more about God, and about how we should live.  This means that religious people should have more knowledge and greater motivation to do the right thing. The sad thing is that in reality we don’t.

However, just because people who believe in God are often not much better than those who don’t, this doesn’t mean that belief in God is wrong, or that God himself is somehow wrong. This is what Paul is getting at in vv3-4. It means that those who believe (like myself) have a greater challenge, otherwise as Paul said in 2:24 “The Gentiles [i.e. non-believers] blaspheme the name of God because of you”.

Our religious identity should therefore help us to live good lives, and that is its advantage, its point.

Verses 5-8

(These verses anticipate a more detailed argument in chapter 6, so I won’t comment on them here.)

Verses 9-18

Paul puts together a string of quotations from the Hebrew Scriptures (what most Christians now call the Old Testament) to support his case that “No one is righteous – not even one” (v10). I find it interesting that some of these verses in their original context are not about ‘everyone’, but specifically about ‘the wicked’, often in contrast to ‘the righteous’ or ‘the godly’.

For example, “Their talk is foul, like the stench from an open grave. / Their tongues are filled with lies.” (v13) is from Psalm 5:9 (the Greek version; Hebrew has ‘flattery’ instead of ‘lies’). Yet this specifically refers to “enemies”; the psalmist asks God to “declare them guilty” (Ps5:10) while noting that “you bless the godly” (Ps5:12).

Paul is making a particular point here. Having made the case in ch2 that everyone (Jew or Gentile) can be good or bad, what he’s saying here is that no-one is good all the time – and by using these verses which originally applied to ‘the wicked’, he’s saying, in effect, that all of us should be classed with them.

Verses 19-20

But there’s an issue here that it seems Paul has forgotten about: what about the good that we do? Does that not count at all? Only a few verses earlier he wrote that “there will be glory and honour and peace from God for all who do good” (2:10) and even that God “will give eternal life to those who keep on doing good” (2:7).

But now Paul writes that the purpose of the law “is to keep people from having excuses, and to show that the entire world is guilty before God” (v19). The concept of righteousness has shifted a little; it’s not about ‘doing right’ but about ‘being right’, and “no no one can ever be made right with God by doing what the law commands.” (20)

I think it might be helpful to fill in a bit of the argument here, which is that however much good we do, that in itself is not enough to be “right with God”. And if we rely on our good works, we’re almost in the position of trying to bargain with God, to reduce our relationship to a transaction; and that is the wrong attitude.

This is not to say that what we do is not important; much of the later chapters of Romans will show this – and see verse 31 below.

Verses 21-24a

Paul is now getting to the heart of the Gospel, having laid the groundwork. And I would like to suggest that what he’s doing here is to explain how God can “give eternal life to those who keep on doing good”, when at the same time “everyone has sinned; we all fall short of the glory of God” (23).

“God has shown us a way to be made right with him without keeping the requirements of the law” (21) – and note, again, that this doesn’t mean we shouldn’t do good, it means again that doing good is not enough. Instead, Paul says that “we are made right with God by placing our faith in Jesus Christ” (22) and then “God, with undeserved kindness, declares that we are righteous” (24).

Being made right isn’t something we do – it’s something that God does for us. Actually, this isn’t something completely new. One of Paul’s list of quotations about ‘the wicked’ is from Psalm 5, and there in v7 the psalmist says “Because of your unfailing love I can enter your house”. He knows that he is considered fit to be in God’s house only because of what God does for him.

The new element in Paul’s argument is that this declaration of righteousness comes through “faith in Jesus Christ”. A couple of things to say about this:

First, when we read Romans 1 I tweeted on v17 (“it is through faith that a righteous person has life”) and made the point that faith here isn’t about doctrine, a set of beliefs, or creeds; it is about trust and allegiance. In fact, Paul was quoting from the prophet Habakkuk, who used a word that is often translated as “faithfulness”.

Second, this is one of the verses that is used to argue for the exclusiveness of Christianity, i.e. that it is only by “placing our faith in Jesus Christ” (explicitly) that we can receive righteousness, and that anyone who doesn’t, can’t. I have to admit that I struggle with this interpretation, as it would seem to write off much of the world – those who lived before Jesus, and those who never heard about him, for example; not to mention those who only hear in the context of ‘Christian’ teaching which puts a whole new set of rules and conditions in place which people don’t want anything to do with.

Is it possible that we can read these words as primarily about an opportunity, a way of expressing religious identity, purpose, experience that does what I suggested Paul meant in vv1-4? And is it possible that we can refrain from passing judgement on those who reject this message, yet still have some form of faith – in a concept of God, in the value of humanity, in the meaning of life – that drives their (good) behaviour; in other words, that we do not limit God’s declaration of righteousness?

Verses 24b-26

One of the issues that the New Testament writers explore is the question of how we can be made righteous by “faith in Christ Jesus”. These verses are one way of doing this, using the language of sacrifice, expiation, propitiation, atonement, paying the penalty. The ideas would have made sense to both Jews and Greeks, even if the application to Jesus himself was novel.

There are many Christians who look to this as the only, or at least the primary, way of describing how faith in Jesus puts us right with God; and some insist that those who don’t accept it are not Christians, do not have the ‘proper’ faith in Jesus, and hence would not be declared righteous. Put simply (and perhaps crudely), the argument goes: I have done wrong, i.e. commited sin; that sin has to be punished / paid for; I can’t pay the penalty myself; Jesus pays it by taking my punishment.

I sometimes think that there is a risk of being too literal with this picture. At its worst, I worry it actually goes back to a transactional model of God, and that it could be seen as limiting God’s ability to forgive. In the Gospels, Jesus frequently pronounced people’s sins to be forgiven, without mentioning payment or punishment.

So I think this image is not helpful for everyone, and isn’t something to be used as a test of ‘true’ faith.

Verses 27-31

Paul concludes this part of the argument by repeating the ideas that it is not our own efforts that achieve righteousness, so in particular it isn’t something we can “boast” about (27). He also says:

“If we emphasize faith, does this mean that we can forget about the law? Of course not! In fact, only when we have faith do we truly fulfill the law.” (31)

Again, faith here is not a set of beliefs, but is about trusting in God; and, especially for Paul and other Christians, putting that trust in Christ. It is where we put our trust that enables us to do the right things and receive the reward; once again “It is through faith that a righteous person has life.”

 

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Holy Hooligans

The title of these poems comes from a Twitter conversation, where it was suggested that “Holy Hooligans” was an apt way to describe the behaviour of some people in church, especially children!

We want the children to be seen, not heard,
To treat our holy place with some respect;
We like our peace and quiet undisturbed,
So this is the behaviour we expect:
No running up the aisle; don’t stand on pews;
No talking, even when the prayers are long;
No giggling; no sweets to suck or chew;
Boys wearing baseball caps inside is wrong!
Jesus himself said, “let the children come”;
We suffer them, for they’re tomorrow’s church –
But wait: it’s possible we’ve got it wrong
And ought to recognise today their worth.
So let us open wide our hearts and hands
To celebrate our Holy Hooligans.

It also occurred to me that “Holy Hooligan” might even be used to describe Jesus himself, especially when we think of him cleansing the Temple (e.g. Mark 11:15-17 ,  John 2:13-16)

He sees, on coming to the sacred space,
The merchants and the money-changers there.
With anger and compassion in his face
He tells them this is still a house of prayer.
He does not share the views of those who say
True worship needs a gift that shows perfection;
A whip of cords he takes to drive away
And turn the tables: is this insurrection
Against those serving God? He calls them thieves:
And though we read the story and agree,
We make it hard for those who would believe
By other barriers, that we may not see.
The way to God requires no talisman:
It’s opened by this Holy Hooligan.

Posted in Faith, Poems | 1 Comment

They also serve…

This post has been brewing in my head for a while now. It’s taken time to get into shape, and some of the ideas have developed while doing so. I’ve written before about the restrictions in activity that come with a chronic illness like ME, but this post explores the impact this has on our sense of identity and value. It’s also a bit longer than most of my other posts – sorry about that.

Restrictions

One of the main impacts of ME and other chronic debilitating illnesses on their sufferers is that we are restricted in what we are able to do. The more severe the disease in anybody (or at any time), the greater the restrictions. It means we can no longer do what we used to do, or what we want to do, or what other people expect us to do; and this can have an impact on who we see ourselves to be.

These things might be for ourselves. In the most severe cases, this will even include the basic care of our lives: washing and feeding, needing help from others. For others, it may  be the things we enjoy doing – walking, driving a car, going out with friends, when we have to make a huge effort to do something and be ready for the inevitable payback. Or it may mean limiting the time we spend doing things like reading, watching TV, listening to music, when we are sensitive to noise and light, or when our brains don’t let us concentrate.

Other things we are restricted in doing are for other people, especially when we have young children. Playing energetic games with them is likely to be out, or perhaps we can only last a few minutes; on bad days getting them ready for school and taking them there may simply be not possible. At times like these we may feel guilty, or even a failure as a parent or grandparent; and although we know deep down that that’s not really the case, and although we get lots of encouragement from others, and although we can concentrate on the things we can do for our children, this still hits us hard.

Or it might be work. Many people have given up work altogether, or can only work part time, or can juist about manage to work but at the expense of everything else. Work is also something that gives us a sense of identity, hopefully it’s something that we enjoy doing, and brings in money to support us and our families: so not being able to do this is a major blow.

Called to serve

And then there are lots of other activities that people do in their spare time: voluntary work in many different forms, helping out in the community, running sports clubs, being leaders of uniformed organisations, raising money for good causes, and many other things. Again these are things we might enjoy, and also help to shape our identity; but they also give us a sense of value, of self-worth. So what happens to this when we can no longer serve?

For many, this idea of finding worth through service is part of a religious faith (though of course it doesn’t have to be). As a Christian, I am reminded several times in the Bible of the call to service, to do whatever I can; and yet this is limited. I hear and read calls for volunteers and think, “I could do that” – and then reality kicks in and I know that I can’t.

I am currently part of a Twitter Bible reading group, reading Luke, John, and Acts from the New Testament, a chapter a day, and a couple of passages have emphasised this call. In Luke chapter 12, verse 48, Jesus says “From everyone to whom much has been given, much will be required” (New Revised Standard Version). I am conscious that I have abilities that have been used and appreciated in the past, gifts I believe have been given to me, which now lie dormant; that I am not giving in proportion to my gifts.

Or take the parable of the talents, in Luke chapter 19; those who use their gifts (in this case, money) to grow are praised, while the one who hides his away is criticised and punished. The New Living Translation puts Jesus’ comment quite strongly: “But from those who do nothing, even what little they have will be taken away.” (verse 26) – do nithing, and perhaps not just in relation to financial investment. Those who do nothing with what they have are held up as bad examples, not to be followed.

Or outside the Bible, there is the prayer of St. Ignatius of Loyola: “Teach us, good Lord, to serve you as you deserve, to give and not to count the cost … to toil and not to seek for rest …”. How can we spoonies, who have to carefuly manage our little packets of energy, live up to this?

Do what you can

But fortunately there are also other views, and one of my challenges is to listen to these rather than keep pushing myself. At some point in my illness, possibly when I had to give up practically everything outside work in an attempt to keep my job, I was reminded of the line “They also serve who only stand and wait”.

At the time I didn’t know where this came from, so I looked it up and found John Milton’s sonnet “On his blindness” (you can read the whole poem here). Interestingly, Milton also refers to the parable of the talents in this poem, and his fears of what might happen if he were no longer using his own talent.

So what does this mean when we feel called to serve?

Earlier in the #Luke2Acts series I looked at the staory of the widow’s mite (Luke 21:1-4). I have usually read this as a call to sacrificial living and giving; the fact that she gave “all that she had to live on” is supremely challenging. The contrast between her gift and those of rich worshippers is not on absolute but on relative terms: she pushed herself until there was nothing left.

But another way of looking at it is that her gift is valued in proportion to her means: she gave a little because she only had a little to give. This is also echoed in other parts of the Bible: for example, in 2 Corinthians 8:12 Paul (who is encouraging people to contribute to an aid programme) says “For if the eagerness is there, the gift is acceptable according to what one has – not according to what one does not have.”

So one way of dealing with a call to service during chronic illness, and the feelings of guilt and worthlessness that come with not being able to respond as we would like, is to focus on the things we can do, and be grateful for whatever opportunities there are.

…and wait

But there’s more. There are times when we feel we can do nothing – not just a little bit, but nothing at all. When the pain becomes harder to bear, when we have to lie down to stop the dizziness from making us faint, when even having a shower or getting dressed is too great an effort, when the brain fog leaves us completely confused and unable to think, when we cannot concentrate on writing or reading or talking to others… The severer the illness, the more this happens, and even for me there are times when I feel this way.

Can we really serve by doing nothing? By just waiting?

I’ve touched on this a couple of times in my Twitter contributions to #Luke2Acts, raising it in the form of a question; and often get the response “at least you can pray”. This is true – but again, only some of the time. Prayer is still ‘doing’, still takes some effort, and sometimes the emotional energy is simply not there.

I’m not alone in this. One of the best books from a Christian perspective on what it’s like to have M.E. is “A Year Lost and Found” by Michael Mayne. He also writes of times when he foundf it difficult to pray, and of his need to be prayed for. He refers to another excellent book, “The Stature of Waiting” by W. H. Vanstone, which explores this general issue in more depth.

One of Vanstone’s points, echoed by Mayne, is that we are still human, still having identity, worth, and value, when we are passive rather than active; when we need to be prayed for rather than pray; when we are served rather than serving. It’s not easy for me to understand an accept this, but I think that it reaches the deep meaning of Milton’s line:

“They also serve who only stand and wait”.

Posted in Bible, Faith, NeuroME | 1 Comment

Outfit of the Day

I don’t often do this…but then not every day is ME awareness day! Several people have been dressing as Princesses for the day to raise money for medical research; there’s still time to donate here.

ootd

So for today:

  • Dress from our church drama group, probably last used by me as Lady Macbeth (that’s another story)
  • Tights from H&M
  • Wig from Poundland
  • Tiara, earrings, and wand from Sainsbury’s toy department
  • Necklace and bracelet (see below) by two of my fellow Princesses, Siân Wooton and Alison West

necklace       bracelet

All in a good cause!

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ME Awareness Day – Blog Chain

This is M.E. – ME/CFS/Fibro Awareness Day 2014 – Blog Chain

me_cfs_fms_squareConsidering International ME/CFS/Fibro Awareness Day is fast approaching, Louse Bibby is putting together a blog-chain where we all get a chance to tell the people in our lives a little about how it is to live with ME – PLUS also let them in on a few other things they may not know about us.

It’s in the spirit of other posts where people fill in answers to questions to let others learn a little more about them; in this case it is partly a few questions about our lives in general and partly questions about the experience of living with ME/CFS/Fibro.

This Is M.E

Most of you (my family, friends, Twitter followers, and readers of this blog) know that I have Myalgic Encephalomyelitis (M.E), also known by many other names. The fact that this illness doesn’t even have one name that everyone can agree on, is one of the many frustrating aspects of living with this multi-faceted illness.

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with ME. Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about ME in my own personal network. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! :-)

What is your name & how long have you had ME?

I’m Allan and I’ve had ME for over 9 years,  generally at the mild / moderate end of the spectrum. This means that, though I’m generally not housebound, I am still restricted in the actvities that I can do.

Where do you live? (Country, State, City – however detailed you want)

I have lived in Cardiff, Wales, UK, for over 30 years, but was born in Yorkshire.

Age (if you’re willing to share)

I am 59; I developed ME just before my 50th birthday.

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

1. I am a big fan of The West Wing; I have the complete series on DVD and when I get to the end I go back to the beginning and start again.

2. I have done a bit of amateur dramatics, including being a pantomime Dame several times.

3. I was once part of a winning 5-a-side football team, despite being completely useless at sport of any kind.

4. I had piano lessons as a child, and often wished later that I hadn’t given up.

5. I have been a fan of the X-Men since their first appearance in British comics in the 1960s.

Tell us 5 things about you that the people in your life probably don’t know about your life with ME:

1. I have passed out in two conferences packed with healthcare informatics professionals, on a bus in Brussels, and also in a supermarket and a Chinese restaurant.

2. I sit down to sing hymns and songs in church services, as I can’t stand for too long.

3. I still drink a little alcohol occasionally, but get drunk much more quickly (cheap date!).

4. I bruise more easily than I used to, and it takes longer for bruises / scratches to heal.

5. My brain fog often makes it hard to take in information when I’m reading, yet bizarrely I’m still usually OK at crosswords / sudoku.

What one thing do you think most people wouldn’t know about living with ME that you’d like them to know?

It’s not about “being tired all the time”; there are many symptoms, including severe pain.

What is the most frustrating aspect for you of living with ME?

Not being able to do the things that I used to do, or that I want to do, or that other people want me to do; feeling useless as a consequence.

Anything else you’d like to say before finishing?

ME is a real illness, with a distinctive pattern of symptoms that can be used to identify it. Calling it “Chronic Fatigue Syndrome” is misleading; and treating it as a psychosomatic disorder is not just unhelpful, it can be dangerous.

Contact details (if you want to give them) – blog, Twitter, FB etc

Blog: www.allancdickinson.wordpress.com  Twitter: @acdyw

Posted in NeuroME, Personal | 4 Comments

A Touch

(I’m taking part in a Twitter Bible reading event, one chapter a day from Luke, John, Acts, called #Luke2Acts. This poem, in the form of two linked sonnets, was inspired by part of the chapter for today, 5th May – Luke 13:10-17)

I

Despite her constant pain she makes her way,
A weekly struggle over eighteen years,
To synagogue: it is the Sabbath day.
She comes to worship even through her tears.
She cannot stand up straight: her back bent double,
Her every movement burning agony.
She sings the Psalm of one who shares her trouble:
“How long, O God? Have you forsaken me?”
The stranger sees her, calls her to his side;
Her suffering has touched his love-filled heart.
Her need is strong enough to override
A law that would keep faith and work apart.
And yet no work is seen, for instantly
A touch is all it takes to set her free.

II

A touch is all it takes to set her free,
Yet people are so quick to take offence.
“All Sabbath work is evil; can’t you see
We’re following God’s Word?” is their defence.
There might have been some substance to their blame
If he had massaged, twisted into place,
Manipulated, acted worth the name
Of work; a touch, a gaze upon the face,
And all her prayers are answered. Can we see
The way of love against the way of hate?
He stares at them, at us: hypocrisy,
Unthinking condemnation, is put straight.
As simply as untying helpless beast
He acts; from Satan’s bonds we are released.

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Another door closes

This post has been written for ME (Myalgic Encephalomyelitis) Awareness week – 11th-17th May. It lists the main symptoms of ME, and describes something of what it is like for me living with this condition.

So, what is ME? There are several good definitions, and the one I prefer is the latest one, known as the International Consensus Criteria (ICC). This describes ME as “a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities” – and, like the name itself, if you think that’s hard to say, try living with it! ICC lists “the unique and distinctive characteristic patterns of symptom clusters” that can be used to recognise ME. These include:

  • difficulty processing information, cognitive overload, short-term memory loss, etc., which sufferers usually refer to as “brain fog”;
  • headaches, and pain in muscles, joints, abdomen, chest;
  • disturbed sleep patterns and unrefreshed sleep;
  • sensitivity to light, noise, smells;
  • flu-like symptoms such as sore throat, sinusitis, swollen and tender lymph glands;
  • stomach and urinary problems;
  • sensitivities to food, medications, chemicals, etc.;
  • dizziness, tachycardia, light-headedness, fainting;
  • temperature problems, including sweating, cold extremities.

ME can be recognised by an appropriate combination of these and similar smptoms, plus what ICC calls “Postexertional neuroimmune exhaustion” (PENE). This is a better description than “post-extertional malaise” that had been used earlier, and refers to the tendency for any of these symptoms to be made worse by any sort of exertion (physical, mental, emotional), together with fatiguiability and the “inability to produce sufficient energy on demand”. PENE may immediately follow this activity, or may be delayed by hours or days, and can have a prolonged recovery period.

These symptoms will vary between people, and will also vary from one day to another for any individual. They also vary in severity, again between people and over time.

Unfortunately, there are also bad “definitions” of ME, especially those which say it is simply another name for Chronic Fatigue Syndrome (CFS). By itself, a name is not particularly important, but CFS describes a much wider range of conditions than ME, concentrates on fatigue or tiredness as the main symptom, and is generally considered to be a psychiatric condition.

The problem for ME sufferers is that most health services (including the UK and USA) will use the name CFS and its broad definitions, so that the only treatment offered is generally unsuitable for ME. The truth is that there is no cure and no effective treatment, although individual symptoms (e.g. pain) may be alleviated by standard medication. In some cases diet changes, vitamin supplements, etc., may also help.

Is ME life-threatening? Sadly, yes; there is a growing number of people whose deaths can be attributed to ME, or where ME is a major contributory factor. These are the extreme cases where symptoms are very severe, with constant pain, the inability to feed oneself, etc.

But for all ME sufferers, this condition is life-restricting, in that we are able to do much less than we could before getting ill. And the more severe the condition in an individual, the less they can do.

I’m fortunate, in that my symptoms are on the mild / moderate end of the spectrum; I know several people (mainly through Twitter) who are much worse off than I am. For example, I am not bedbound, except on very bad days; I am usually not housebound: I can drive or walk for short distances if I need to on a day or two in most weeks. I can look after myself (although showering sometimes causes me to feel faint, which is why I now use a shower stool), do some housework, and usually do the weekly shopping. I do get many of the symptoms that ICC describes, so fall into their definition, but not usually too severe. PENE is still a problem, though – see below.

But on some larger areas of my life, ME has indeed been restrictive, and these restrictions have been growing. I sometimes imagine this as being in a building where I used to be able to walk into any room I wanted, but over the years some doors have been closed to me, confining me in smaller and smaller spaces. Another door closed yesterday (1st May), hence the title of this post.

The first door was a leisure activity, hill-walking, which I have written about in more detail here. This was in 2006; but I was still working full time, and doing lots of things outside work, often for our local church, so it didn’t seem too bad. I took days off work when I was feeling bad, but gradually these increased until the point where I had to meet my manger and HR to discuss what to do.

So that was the second door: I agreed to cut out pretty much all non-work activity, so gave up several roles and responsibilities within the church. I had hoped this would only be for a short time, say a few months, until I could build up some sustainable energy, but it was not to be. After getting better for a while, the sick days started increasing again.

The next door, then, was that I had to give up full-time working and move to a four-day week. Again, it was only intended to be a temporary solution, but lasted longer than I hoped, and I began to think seriously about the possible need to take early retirement on ill-health grounds.

So in August 2009 the next door started to close when I made the decision that my working days were numbered, and I applied for ill-health retirement. My first application was rejected, on the grounds that I had not yet gone through the recommended treatment, and at the time I was waiting to see a consultant.

During 2010 I had several sessions which included elements simuilar to Cognitive Behaviour Therapy and Graded Exercise Therapy (fortunately applied much more flexibly than in many people’s experience), and in October the consultant signed me off as it had made no improvement. I was able to apply again, and this time it was accepted, making early retirement just about affordable without having to apply for benefits.

This door finally closed in April 2011; but this time it seemed to be a case of “where one door closes, another opens”. Our Church Secretary announced that he would not be standing for re-election, and the announcement came the day before the consultant signed me off. As this was a role that I had vaguely thought about in previous years, the timing seemed providential.

However, the years since retirement have seen my health deteriorate even further (measured by numbers of “good days” over a given period, as described here). I was becoming less and less cable of doing this job effectively, and finally decided to stand down, effective from a Church Meeting yeterday evening. Another door closes…

Although there is no treatment for ME, there are ways to manage the condition, and the one that most people find most helpful is known as pacing. This involves listening to your body, not going beyond your limits. Ideally, you need to set up a baseline of activities that you can do even on your worst day, and build on that.

I’ve tended to be a bit less strict in my pacing regime; but I do try to schedule activities and spread things out. For example, if I do the shopping in a morning, that’s usually it for the rest of the day. I also know that a day of excess activity is likely to be followed by several bad days (thanks to PENE), but sometimes this is inevitable when things have to be done, or when I choose to do something impiortant to me (like travelling for a holiday).

I have wondered, though, whether PENE works on a longer timescale: for example, when I have pushed myself over several months to keep working, is there a much longer payback period when I stop? Or perhaps the Secretary role was simply more stressful than my job as an IT consultant! Perhaps if I had taken a complete break from everything in the early days, I might be much better now, maybe even still working.

Whatever, having now given up practically everything outside the home (I’m still deputy sound system operator at church), for the first time I’m really able to manage life with ME properly, only doing things when I have the energy for them. Hopefully, this may show some improvement – watch this space!

I hope that this has given some insight into living with ME. Everyone’s story is different, but all of us feel the frustration of having to cope with a condition that restricts our life, has no cure, and is often dismissed by the medical profession.

 

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