a retrospective on managing CFS

I've been really interested to read over at Apples of Gold about Red's experience in her CFS diagnosis and more recently her thoughts on her first session/'presentation about CFS.

It's reminded me of my own experience back in 2007 of starting my CFS 'Lifestyle Management' programme - I can't believe it has been this long!  Initially I started with four rest stops a day, and then went down to three.  I still do them.  I'm more flexible these days, but basically I stick with the same routine - Rest Stop 1 mid morning (10.30am), Rest Stop 2 after lunch (1.30pm) and Rest Stop 3 before I make the evening meal (4.30pm).

At first it seemed impossible, and yes there can be a great deal of inconvenience in dividing your day into segments.  But I discovered that by doing this I do not get to that awful stage when I've had to rely on pure adrenalin to keep going, but then it kicks out - and I am left shaking and feeling sick, exhausted but completely unable to rest.  The Rest Stops (I capitalise them in my head; this is not official language!) act as my framework, the pillars holding up my day.  I'm not terribly good at doing them properly - emptying my mind and meditating - but I still keep that habit of at least try and lie down.  This does not involve sleeping, although many people seem to assume so.  "Have you had your sleep?"  They ask me.  I don't often bother to correct them, but if they ask I will explain more fully.

Lately I am trying to make my rests more productive - really trying to turn off my mind by going through mental exercises - the most effective I have come up with is imagining a warm glow moving up my body, bit by bit, telling myself my feet are warm and heavy, my calves are warm and heavy, etc., and then doing breathing exercises throughout.  It takes discipline but I'm certainly more relaxed than when I started.

The other part of the programme was managing activity levels, so I that I set myself daily activity at the lowest common denominator and operate at that level regardless of whether I feel better or worse.  This counteracts the boom and bust cycle - doing more when we feel better, which makes us feel worse, which makes us do nothing, which makes us feel better, which makes us do more, which makes us feel worse....and so on.  That 'lowest' level is usually lower than you expect it to be and can be a discipline to obey.  You need to recognise what activities you find most energy consuming and space them out with gentler activities. When you feel you are managing your energy consistently over a period of time, you gradually increase your 'level' of activity.

Again, I'm not as rigid on this now as I was at the beginning, but it's useful to remind myself.

One other thing I've been reminded of by reading Red's thoughts is how incredible it feels finding those who understand you and your symptoms, as well as getting past the desire not to be defined by my illness.  Now that I 'own' it more readily, the reverse seems to be true - yes, this is true of me - but so is this, and this.  It is part of me and I can't deny it, but it is not all of me. Meeting with others actually released me to feel more 'me' and less 'M.E.'.

It is not all that I am - but I have had to learn to accept it, work round it, make allowances for it.  But it does not define me.  It is just another adjective of my life.

the incongruity of me

THERE ARE times when I know that trying to do anything is useless; I am over-expended; there is nothing for it but to slouch grumpily quietly recharge until I regain some kind of energy, however small.  But my personality is not terribly patient with resting up and waiting.  It's not that it doesn't like being calm and meditative or reflective.  But when tiredness comes along it is not terribly sympathetic even to gentle reflection - I can't even rest coherently.  My mental abilities are resigned to two simultaneous states - one rather like the hyperactive toddler who should have been in bed two hours ago, and the other a dead, lifeless opposite.  The one wars against the other while from the outside I look generally spaced out and cannot seem to construct sentences properly.

When I stop, I tend to dream.  My hopes and longings bubble up unhindered by busyness, but they are so incongruous in comparison with my physical state that moments of elation are swiftly followed by moments of depression.

I don't feel depressed while writing this, so you don't need to grab your box of tissues.  I just wanted to have a bash at explaining something I can't easily describe. I don't even know how to finish this post, but life alas seems to require days like these - riding out the silly fatigue, putting my desires and expectations in the corner of the room and allowing myself to feel and act like mulch.  Perhaps those who need rest the most resent it the most.

Eventually, the mulchiness is moulded into something rather more helpful - quietness of heart.  But such a thing is not acquired by the flicking of a switch or a mere intention.  No, first I have to master the mulchiness of a dynamic personality warring against the stagnancy of fatigue.  Then, and only then, does serenity seem to have a chance.

ten things I’ve learned about tiredness

1. Tiredness robs you of the ability to achieve
2. Tiredness robs you of the ability to perceive what you have achieved
3. Tiredness makes everything feel bigger
4. Tiredness can turn you into someone you don’t want to be
5. Tiredness sensitises you to light, sound, and other external factors
6. Tiredness sensitises you to sadness, frustration, and other internal factors
7. Tiredness is difficult to explain to someone who doesn’t tire easily
8. Tiredness makes it difficult to communicate in general
9. Tiredness unravels your defences
10. Tiredness can get so bad that rest feels impossible

Okay, nothing ground breaking here.  But sometimes I feel it’s helpful to remember that tiredness has an influence.  Sometimes it’s helpful to see the obvious, to say – that’s the tiredness talking.  A little re-arranging of perspective becomes necessary. And although my view is intimate and more extreme due to CFS/ME, I believe tiredness is increasingly common for everyone in a culture that prizes busy-ness and success. We try to fit so much in to our days, and then berate ourselves for not fitting in more.  We feel we’ve done nothing, managed nothing, except make ourselves more tired.

It’s a tired world.

On a slightly related topic, I've been included in the 100 Best Sites for Fibromyalgia or Chronic Fatigue Information at www.b12patch.com.  Not sure if I really qualify as it's not the primary topic of this blog, but thanks to whoever recommended me!

Image source unknown

the monster lying low

This week is M.E Awareness Week.  I feel a little inadequate to write something, so I'll repost a poem I blogged here in January 2008, as a reflection on my own experience.

there are so many ways to describe you...
although none is enough

you are a monster lying low
dormant at times, merely draining
at other times a beast intent 
on destruction

oh how I wish I could be rid of you

you are a cage with bars unyielding
shrinking inward, and I am trapped
squeezed and desperate to escape
this feeling

oh how I wish I could be rid of you

you are poison in my veins
you fill my body with leaden weight
motion becomes an effort
for me now

oh how I wish I could be rid of you

sometimes, you have been my teacher
causing me to notice what I would never
have noticed without you, known
without you

but oh how I wish I could be rid of you

now.

For a more prosaic account of my experiences, try here.  Obviously this is written two years ago, so it's not entirely up to date.  There are those who have far more severe CFS/ME than I do - see here.

the sting of disappointment

Today I participated in the final part of a training course I've been attending on Core Skills for Children's Work.

This is the point where you say: wait.  I didn't know you work with children?  Well, I don't, strictly speaking, but we do host a 14+ youth group (Andy leads, I help).  Much of the course skills are transferable and, aware there were a few of us working with teens, the leader has been very adaptable and keen to apply the course materials to us as well.  It's been great on so many levels- and I hope to post further reflections on this at some point.

But, a more personal reflection for today.  We arrived at the church early so Andy could help with setting up.  I went into his office and started digging around the theological and biblical tomes to follow up some thoughts I'd had - enjoying the opportunity for a bit of study in a 'studious' atmosphere! I then joined in with the main session.  It was an interesting morning.  But barely an hour into the session and I felt my energy start dropping.  There wasn't a great deal I could do about it, so I struggled on.  At lunch time I got a cup of coffee and took a brief rest on the senior minister's sofa (knowing she wouldn't mind!).

But I'd started feeling frustrated.  Sometimes when the tiredness hits I take it in its present form, simply applying it to the here and now.  Today, it became an everything about me and It moment.  I started on the 'why' questions.  I don't entertain them often, but today I couldn't help it.  Why can't I do things?  Why can't my energy last?  Why do I have such passion and enthusiasm and no energy to use them?

And, most of all, the question blaring through my mind was: why can't I be myself?  I feel like the tiredness squashes who I am and who I was made to be.  I feel like I have to be someone I'm not just in order to cope.  Becoming withdrawn, not contributing, not able to build relationships with others or dig more deeply into life because I'm simply focusing on maintaining my own strength.

Today, it was driving me mad.

It also made me well up.  I hate the way I cry.  As soon as my tear ducts tickle even slightly my nose says: wahey!  I'll join in!  And then in no time at all I cannot breathe and I'm streaming.  My face thinks: what the heck!  And I turn bright pink and blotchy.  I don't need to wail to look like I've been wailing.  And my nose blow is like a trumpet.

So, a quick weep on the side was not an option.

I struggled through the afternoon holding back those infernal tears, and then started thinking about all the other things I couldn't manage doing (bad move).

When I got home, I took myself into the garden, sat on the step, and  finally allowed the tears to spill out of me.

This helped somewhat.  I realised that it wasn't frustration that I was feeling, not really.  It was disappointment.  Un-distilled, jagged disappointment.  Disappointment really hurts.

After a while, a little suggestion popped in to mind about how to deal with the 'other things' I'd been agonising over.  I kicked and punched a bit before caving and admitting - yes, that's a sensible idea.  Then peace started trickling in, relieving and restoring.

But I had to go through the whole process of expression and release first.

Sometimes, telling myself 'don't let it get to you' doesn't work.  In the end, I have to do it - let it get to me.  Then, after the sobs and the prayers and the clenched fist offerings, a still small voice is detectable, right on the edge of consciousness.

I need to de-clutter sometimes, simply in order to hear it.



Image: Lesley wrote a post on Chronic Fatigue today, which I found soothing.  I've used the same picture.

the matchbox

At the moment, I am lighting a candle every evening.  This means striking a match.  But the box of matches I dug out is old and worn. The striking surface has lost most of its friction.  I need to press the match very firmly as I strike, and often make several attempts.  Press too hard and the match itself breaks.

I mentioned to Andy that we needed a new box of matches.  He dug one out from somewhere and I picked it up yesterday, pulling out a match.  I struck it hard against the side of the box and the flame flared so suddenly it made me jump.  I had not realised how ineffectual the other one was; I was so used to having to make several attempts.

After lighting the candle, I stared into the flame, suddenly thinking.  I had been caught by a moment of recognition, of description.

I realised - this is a bit like how it feels to struggle with CFS/ME - at least, it is for me.  So often I am filled with ideas and passion and inspiration - 'matches' full of potential.  Then I go to light them up and end up desperately striking against an old, worn box, unable to find the energy needed to ignite the passion, to implement the idea.  It's a repeated frustration, and often I feel like I am left with a pile of ideas I cannot use - a pile of wasted, broken matches.

On thinking about this I am not intending to sound self-pitying or miserable.  Rather it feels like a moment of helpful reflection.  Some things are hard to describe; finding a picture for them is something of a release.  And of course this image could cover a multitude of limitations, struggles and illnesses.  

Sometimes, for all of us, life just feels like striking ineffectually against a matchbox that won't do what it's supposed to.

So - do I give up trying to light a candle?  No. Rather than spending all my time waiting for a fresh matchbox, I don't intend to neglect what I've got.  It may take a few more strikes, but the flame is worth it, in spite of - and because of - the effort needed to catch a spark.

Image from stock.xchng

choosing to lift my hands

Sometimes it hurts to lift my hands. Not necessarily from great pain or grief, although certainly there have been times when that was true. Often they are simply tired or heavy. Today my arms are physically aching, but I chose to lift them anyway.

Pondering the nature of worship, I reflected that so often we are tempted to  express ourselves in these outstretched, visible ways only when we have already received: when we are feeling.  Our praise becomes our response to that feeling.


But today I lifted my hands not because I felt like it, or even because I wanted to feel like it, but because I wanted to show my determination to worship despite my physical and mental tiredness. I chose to use my arms to praise. I chose to lift my hands.

I wanted to express a dedication within my limitations, or perhaps beyond them - to say - this is what I ascribe to, this is the person to whom I ascribe greatness, the one who does not change in spite of my vulnerability, my changing emotions, my body - which does not recover as well as I would often wish it.

Does this make my worship less heartfelt?  I do not believe so.  I do not lift my hands because I think I should, or because I want other people to notice.  I do not lift my hands to make myself look spiritual or as a reflex reaction.  I do not lift my hands as if it were a mere accompaniment to worship.  I lift my hands because I recognise the worth of the one who I follow and worship.  I want to say 'yes, you are worthy of my praise', even when my legs are wobbly and my shoulders knotty.

Sometimes it hurts to lift my hands, but I choose to anyway.

blogging, gender and Christianity (part 2)

Firstly, I'd like to say a few things about me.

I keep a blog.  This much is obvious.


I am a Christian.  The fact that I use this term to explain my belief and chosen lifestyle instead of merely as a label, is also fairly clear to readers of this blog.


I live in the United Kingdom.


I am married to a church minister.


My husband is a minister in a UK Baptist church.  I, too, have found my theological 'home' in the Baptist way of looking at things.


I have a degree in theology, and this is a continuing interest.  I have always longed to think and explore faith, life and meaning more deeply.  (This is part of the purpose of this blog, in case you hadn't guessed.)


I am hopelessly forgetful, so in order to remember all the things I learn I have to keep thinking about them.  My life needs regular littering with reminders.


I am a writer.


I struggle with Chronic Fatigue/ M.E., which impacts my way of life.


I have a variety of hobbies and interests, most of which fit loosely under the topics of expressing my creativity and exploring/enjoying the natural world.  Most, not all.


Is this the sum of my parts?  By no means.  This tells you nothing about what I'm like to talk to, my mannerisms, my views on specific subjects.  There is much, much more to me.


And amid all this, I am also a woman.

I've already stated in my previous entry that gender isn't something I'm particularly concerned with when reading blogs. If I'm honest, any disparity hadn't really occurred to me.  I think that we all have certain issues which act as triggers for thought and feeling.  I have not had any particularly painful discriminatory experiences as a woman, so I'm probably less personally sensitive to it.  (Although I still remember the shock and hurt of reading what some of the 'Church Fathers' have to say about women!) What I am sensitive to is being pigeon-holed and labelled.

Why?  It's probably partially the health thing.  I used to hate being known for being the one who was 'ill'.  I've carried that sensitivity through with me.  That, I admit.  So it will colour the way I look at things. I think if this post had another title, it would be 'Know Yourself' - but more than that, knowing that what is not an issue for you is  an issue for others, respecting that and listening to them in order to understand their point of view.

So when we talk about something that constitutes one of my parts - be it health concerns, or indeed womanhood, I am quickly wary of labels.  The fact is, I don't want to make a big thing of it.  Making a big thing of it, for me, involves a kind of isolation.  You take the 'thing', the 'label' and suddenly the whole broad sweep of things gets lost.  I'm going to have to say it, although I hate cliches (interesting) - you can't see the wood for the trees.

For me, singling out women implies that they are an issue.  A problem.  Not simply one part of this weird and wonderful thing called humanity.  A humanity that together reflects the likeness of God.  And a faith that says we are all one in Christ Jesus.  (Remember - this is my perception, my explanation of what I struggle with.  I'm claiming nothing else.)

So why, I hear you ask, am I even posting about this?  Well, there was a conversation going on.  I listened to a few people.   I like discussing things, so I joined in.  It really is that simple.  I've learned enough about myself to know what my sensitivities are, and this takes away some of their power.  Therefore  I join the conversation out of interest, out of a joy of interacting, of thinking and chewing over an issue.  Of, yes that's right, looking deeper.  This is not a big issue for me, but it is a big issue for some.  Out of interest in and respect for their point of view, I am adding my voice.  There's no obligation to listen, of course!

I should add that  in no way am I saying that this is merely about personal sensitivity to an issue.   There do seem to be less women in the UK blogging about Christianity than men, and it's good to point this out and ask why.  I would love to read more blogs by women reflecting deeply on their faith and theology.  It's been great to discover new ones during this discussion.  Here, however, I'm merely bouncing my own thoughts around on my own blog.

Now, again there are various tangents and topics that skim through my mind.  I do still want to talk about denominations, because one thing I have noticed about the UK Christian blogosphere is that bloggers tend to 'cluster' in their denominations.  This, to an extent, is inevitable.  All these threads of commonality, be it gender, profession or belief will naturally cultivate certain groupings.  Humans, after all, have a tendency to congregate.  Coincidentally, tomorrow marks the start of the 'Week of Prayer for Christian Unity'.  So perhaps I'll do a separate post about that later in the week.  But what I would like to see is more crossover between blogs of different denominations, celebrating that which we have in common, explaining our differences and doing so with gentleness and respect.  More on that, later.

I also want to look at the nature of Christian blogs, because I wonder if the issue is not so much about UK women bloggers who are Christian but those who blog particularly about Christianity,  theological reflection, or church ministry.  Because the latter is far more specific, and it may be that there are plenty of UK Christian women bloggers, but just not so many who use their blogs as a place for theological reflection.  They have other topics that they choose to blog about..

Which takes me into the area of the purpose of blogging, audience and all kinds of things that would make this post too long.  But my point, if I have a point, is that there are so many factors.  It's interesting to me to dig a bit deeper and find out what they are.

Image from vectorstock.com

the right to rest

On the shelf in the room next door is a caterpillar.  Not a real caterpillar, I hasten to add.  A wind-up caterpillar, a segmented little creature that once wound up, will squirm its way across the surface.  It will keep on squirming until the mechanism unwinds entirely.  Then it staggers to a halt.  If something gets in its way, it won't stop moving until it has wound down.  It will simply squirm on the spot, headbutting at the obstacle until somebody moves it out of the way.

Sometimes I think we live in a wind-up world.  In this Western culture of ours, at least, we tend to keep going until we cannot keep going, keep trying until there is nothing left to try.  Rest becomes just another thing on the To Do List - a necessity we need to do at some point, but only when we really have to.  It's not that we don't want to do it.  It just becomes harder and harder to justify as the tasks line up in our minds.

What fascinates me about the institution of Sabbath under the Old Covenant is that part of the reason for it is compassionate.  It's not about a list of things that you should do on the Sabbath.  It's about resting yourself and your household and (touchingly) your animals. Those who have no choice when they work are given the guarantee of a day off.  Those who have had no rights are given this right.  The right to rest.

I do not keep Sabbath, not in the Old Covenant sense.  And the idea of Sunday becoming a Sabbath equivalent is not particularly feasible in our household - Sunday is a busy day, Sunday is a working day.  Sunday is a day for worshipping God, for teaching about God, for focusing on God. Sunday is good.  But Sunday is not like Sabbath.  Not for us, and not in fact for many Christians. I cannot shove Sunday into a Sabbath mould.  Sunday is Resurrection Day, the day when the early church chose to remember the great Third Day Spectacular that was Jesus Christ rising from the dead.  I like that.  Sunday is Resurrection Day.

So, instead of keeping the Old Covenant Sabbath day, we follow the principle of Sabbath.  Which is great.  Except sometimes we get so cluttered up in life that our principles get a bit muddled and lost and, rather too often, postponed.

One problem I find is that it's not just about physical rest but turning off our minds.  This will apply more to some people than others!  Some of us have naturally busy minds - be it because we are feeding off the other busy-ness of our lives, because we're worriers, or simply because we're creative and thoughts form entire paragraphs in minutes. And we can't switch off.  Our minds become like that caterpillar, squirming and head butting at what ever obstacle stands in its way.

Because I suffer from Chronic Fatigue (M.E) I have a routine of scheduled rests which I do my best to follow - three half hour stopping points throughout the day, where I lie down, do nothing and allow my body to recharge.  I'm quite good at following this rule on a physical level, but my mind is another story.  I whir away, my thoughts tumbling, until at some point I remember - I'm not supposed to be doing this.  I'm supposed to be giving myself the right to rest - mentally as well as physically.

There are of course various exercises you can do to relax yourself, but I find these lack permanence for me and my chaotic mind.  In the end, there's only one possible thing I can do - and it's so often the last thing.  So often the last thing.  I go to the Lord of the Sabbath himself. How we squirm away sometimes! No. No. Must. Keep. Going. Forgetting that the burdens we place on ourselves are unnecessary.  We refuse to believe this. We assume we must do all that we do. But what if we couldn't? We need to continually look at our lives and ask ourselves: is this really helpful/necessary/important?

Amid the clutter of my thoughts, I go to the Lord of the Sabbath himself.  For I admit, sometimes I lose control of my own mind.  I've wound it up, and now it won't wind down.  There's no switch-off.  It's out of my capability.  I know, amid my struggles and my thoughts - yes even the good  ones- amid my tasks and my ideas - yes even the good  ones - I have been given a certain amount of energy in the day.  I need to look away from the To Do List in my head, even just for a few minutes.  (If you don't have five minutes, you need to look seriously at what you are doing with your day.)  

Because the principle of Sabbath rest holds firm.  We need rest - for body, soul and mind.  We have been created to need rest.  Rest is created for us.  We have been given the right to rest. And to get good at rest, we need to practise it.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.

Matthew 11:28-29 

strategic withdrawals

I have been feeling very weary the last few days, more so than usual. I can recognise danger signals these days, when the fatigue starts clamping down on me more than normal. The only things to do is make a strategic withdrawal - not making any more commitments, backing out of those I can and making it plain that the next month or so I will be decreasing my activity levels.

It's a frustrating thing to do, but it needs doing. If I keep plugging on regardless I risk a complete crash - worse, relapse - which could seriously restrict me for months. I am not willing to let that happen, so now, while in the dangerzone, I am starting to make strategic withdrawals. I have to surrender the battle in order not to lose the war.

Oddly I think it's a good thing I've signed up for NaNoWriMo - I can curl up and do that casually and gently, without feeling miserable. Withdrawing can be very isolating, so a focus inside these four walls is helpful. I can write horizontal, if I have to, sprawled out with notepad or netbook. It will take my mind off all the things I cannot do. I'm just praying my headaches are not too troublesome, because between them and the fatigue, that can cause problems in doing anything, which is horribly depressing.

Of course it would be the lead up to Christmas - but that can't be helped. If I start taking things easier sooner rather than later, I should be able to manage at least attending things, if not participating in a way I would like.

Such is life with CFS/ME.

intolerant...

image from Stock.xchng

From a recent food intolerance test* I've taken, it looks like I'm intolerant to cow's milk and yeast (and, somewhat randomly, cashews!).  I know these tests are not clinically proven but I've heard a lot of positive anecdotal evidence, so I felt it was worth a try - at least it gives me a chance to test it out by making significant dietary changes.

And significant is what they are.  Suddenly everything needs to be dairy free, which takes out anything derived from cow's milk - obviously cream, cheese, ice cream, chocolate...but there's a lot of food which contains cow's milk or its derivatives, in various sauces, soups and many 'store cupboard' ingredients.  And yeast, of course, does not merely mean taking out bread and marmite.  Do you realise how many foods contain yeast or yeast extract?  Over half of the foods in our cupboard and fridge are suddenly a no-no on yeast alone.  And when it comes to finding things that are dairy and yeast free - well, therein lies the real challenge.

Still, I like to have something I can do.  For someone who has suffered from chronic fatigue for over half of her life, and the last few years the delight of 'chronic headaches', the idea of something I can actually tackle comes as something of a relief.  I'm not going to assume it's going to solve everything - I know for me at least it's more complex than that - but it might help.

I can do something practical to help myself, based on something specific.  Which is something of a novelty.

Of course, this means that I am doing lots of reading around food intolerance.  I'm having a phone consultation with a nutritionist next week.  Allergy UK have sent me some useful links. Interestingly, I've read in a few places that you often crave the very thing to which you are intolerant (there's a sentence trying too hard not to end with a preposition!).

This led me, as usual, to reflect more widely.  How often do we long for the very things that are least helpful or healthy?  Do we crave that which we cannot tolerate - be it physically, mentally or spiritually?  What addictions or bad habits are we unwilling to forgo?

It rather disputes the philosophy that 'everything is good for you, if it doesn't kill you,' and 'if it feels good, do it'.

What we desire is not always right or even good for us.  It's reflected in so many patterns of our lives, yet we are usually unwilling to admit it.



*The York Test.  There are cheaper alternatives, but it was the one recommended and used by friends. They also provided services which were not available from other test centres.  I've found them prompt, efficient and helpful so far.

new politics?

Our youngest Prime Minister in 200 years and the first coalition government since the Second World War.  Goodness, this is all very different and could be quite exciting...

Image from BBC news website, for full article see here


***

Today is also ME/CFS awareness day, which is well worth a mention, amid all the hype of current happenings - drawing attention to those of us who long to make a difference but are hampered by an unsympathetic, unpredictable and frequently misunderstood illness.

terrified of tiredness

I am struggling with quiet frustration at the moment due to an extreme lack of energy. Well, not so quiet, as am sure Andy would tell you.

The problem is that, for any Chronic Fatigue/ME sufferer, intense tiredness is frightening. We know what it can do, how long it can last, how it has dogged us in the past. We are terrified of tiredness - the word itself completely inadequate - because we cannot reassure ourselves that we will get over it by next week, or that a good night's sleep will see us through.

At this time I'm on more meds for these idiotic headaches (much eye rolling and not so quiet frustration, again). I am aware of the possibility that this utterly shattered state could be a side effect. I spoke to the doctor on Thursday; she said I can come off them if the feeling becomes unbearable, if only to see if it is indeed the tablets to blame. I've decided to do that. I need to know what I am dealing with - and if I discover it is the medication, I can ease away from the automatic feeling of dread.

I have appointments coming up in April - one for the orthoptics department yet again - I'm praying they can at last work out my prescription.  I appreciate them taking so much time over it, but I long for the diagnosis to eventually be made.  (They find my eyes fascinating. 'Did you see the way her pupils dilated?!' They whisper to each other.) The first woman I saw about it shook her head and said 'Oh, you poor thing,' with such sympathy and understanding I almost burst into tears on the spot. Funny, isn't it, how a kind word or action can break you in half. 

I'm seeing the neurologist in May.  Hopefully there will be some clarity.  I know some of it is muscle problems with my neck.  I suspect the sinus problems I frequently have contribute to it.  I know that at least some of the problem with my headaches is to do with the way my eyes work together.  They ache continually.  All the time.  With that and the wider headache (triggered by whatever) and the tiredness caused by medication for the headaches, I feel fenced in, limited, gasping for air.


I'm a writer.  I write.  Headaches, eye pain and mind-fogging tiredness are...not good.

And they make boring blogposts, too!


Glasses image from stock xchng

wishing

I wish
I could more easily grasp
the things I long to know and understand
I wish
I could remember all the things I have learned,
and not have to learn them
all over again.

dancing partners

Who is your most regular dancing partner?

I had an inherent shyness as a child which morphed into sheer self-consciousness as a teen. I masked it by a kind of deliberate silliness, directing attention away from myself and onto another, not entirely real, persona. So much of the time I was dancing with fear. These days I have a more balanced approach to dealing with such twinges of shyness and self-consciousness, something more of a realistic approach to dealing with fears and anxieties – but they are not entirely absent; I have to swallow hard and overcome them. Sometimes it is very difficult. (It’s hard to explain to someone who has never struggled with the feeling of self-consciousness – that literal shrinking inside of you, begging to be elsewhere).

We all have factors in our lives which we deal with regularly. Things which lead us on a dance we do not like, filling up our dance cards until there is simply no room for anyone else. These factors can be anything: fear, worry, bitterness, anger, addiction, or very specific things that only we (& God) know about. They take their toll on us. I have learned from my experience with Chronic Fatigue that even confidence requires energy – on a physically bad day, overcoming that innate self-consciousness is much, much harder. And tiredness, of course, makes us more susceptible to these things – it makes me more susceptible to fear’s advances. And these advances, of course, tire me further.

It’s good to have a realistic view of these things in our lives, to acknowledge their presence – to note what inflames them or makes them more difficult to overcome. In this way we can learn to manage our ‘dance card’ better. Personally, I want to dance a different dance.

I want love to be my constant interrupter:
can I cut in?

For love is the nemesis of fear, overcoming those ‘twinges’ with a greater reality. In its true form, love is stronger, bigger, more powerful. I need no longer feel self-conscious because I am simply not dwelling on myself at all. I wish to reach the point when I am compelled to dance only by the love of Christ, nothing less.

I’m longing for the day when all the negative things inside me are ejected from the dance floor forever. When I will no longer know in part, but know fully the one who loves me and leads me on the greatest dance of all. When everything falls into it’s rightful place, placed into perfect perspective.

And I shall dance and dance and dance…
…and never, ever, tire.

***

Picture credit: 'Dance at Bougival' by Pierre-Auguste Renoir (1841-1919), Public Domain image

a day like today...

... well, it is today, so what else could it be like?

This morning I had a physio appointment. The last two times the buses have been really unreliable. The first time I got on a different bus than I would have preferred, as there are so few of them, but the normally 'regular' bus was failing me. Worked out all right - the ticket machine was broken so I got a free ride. The second time two buses failed to show so had to ring Andy to give me an emergency lift. Hence this time I was at the bus stop almost an hour earlier than I needed to be, so that I had three possible buses to miss. Of course, the first of the three arrived on time - almost unheard of to be so precisely on time - thus I was sitting in the waiting room for 50 minutes.

As part of a decision to read some well known books that I'd never got round to reading, I had Heller's Catch-22 with me. Every now and then I made a strange snuffling sound, trying to contain a bemused laugh. No one seemed to notice. It's one of...six (?I think?) books I'm currently reading. I tend to pick up books absentmindedly and before you know it there are books in various places all waiting to be resumed from where I left off when last in that location in the house. It works for me, and it amuses Andy, who keeps a tally!

Felt a bit low after my appointment as she is not convinced physiotherapy can do much more for me. Had long winded discussion in which I felt more and more tired and frustrated. I'm having two more sessions and then she will write to my GP. I'd decided to walk into the city centre as it wasn't too far away, but felt rather shattered energy-wise, and frustrated at being shattered. Went to explore the new craft shop I'd heard about - very exciting having one I can get to myself. It was very good, but felt too tired to appreciate it. Thought I'd go and have some form of refreshment, post my parcel, and come back.

Decided to post parcel first. Was stopped by two guys in close succession with clipboards asking me about line rentals, dodged away from them (one hollering after me), suddenly exhausted, feeling rather hounded. When I'm very tired little things like that tip me over into miserably tired. Was compounded by two more reps blocking the stairs in Smiths, which has the Post Office upstairs, and badgering me again. Near tears with sheer fatigue.
'I just want to go upstairs!' I pleaded.
'All right,' one replied, 'I'll catch you when you come back down'.
Could think of no response to that except a small groan.
Stood in cue at Post Office desk feeling stressed. Slipped down the other staircase and made mad break for the door. Making mad breaks is far too energetic for me when the fatigue hits, so felt rather sick.

Succeeded, and due to state of misery walked further down to find the cafe I like, and had a cup of tea and a toasted teacake. Sat feeling stupidly tearful and idiotic. Realised it was pointless to go back to craft shop in current state, so headed grimly for the bus stop.
Ran the gauntlet of the High Street.
'Please God, make me invisible!'
Managed to dodge the annoying reps. Relief palpable once on bus.
'There you are, my dear,' said the bus driver as he dropped me at my stop.
'Thank you,' I replied, with great sincerity.

Sheesh. Such silly things tire me out so much.

bloggy business

Argh! Just wrote entire post then it disappeared, and auto-saved before I could get out! I shall try again, but may not be as cheerful as the first time (if I get through it at all).

I managed to win a free blog button designed by Mommy Designs Blogs courtesy of Angela over at Becoming Me, which was a surprise - so that will appear at some point! Thanks, guys.

Not sure whether anyone is so devoted to my blog that they would put my button in their sidebar! Well, perhaps one prospective blogger...you heard it here first, folks (unless you're one of the buns over at this blog, where I may have mentioned it in a comment!) - Charlie is in the process of setting up his own blog.

He's very fussy, as you may imagine, but hopefully it won't be too long before he enters the public blogosphere. I've told him firmly not to expect daily posts, since I get the impression I will have to do most of the work. After all, his typing skills are appalling, and just between you and me, his spelling is atrocious, too.

Went to our Chronic Fatigue Group meetup yesterday - not sure what to call us now that we're meeting up under our own steam...not that we have much steam between us! Good to see each other and have some laughs (especially when we forget where we are in conversation and lots of umming and er-ing ensues).

Am intending to write a Good Friday post tomorrow, all being well. Am going to Maundy Thursday communion tonight; not sure if I'll manage tomorrow's services but plan to be there am and pm on Easter Day. Lots of chilling on Bank Holiday Monday! Andy has taken some time off next week to have a bit of a rest, so hopefully it will be a nice relaxing time for us.

Now, for the second time, I am intending to go and tidy the bedroom. Beyond my side of the bed is what I call my Zone of Chaos (cue dramatic music) - need to get it under control for a little while. Before Chaos rules again...

Today: 3/10, medium high

BREAKING NEWS!

The goldfinches are nesting in next door's magnolia tree, which overhangs our garden. Cue breathless excitement and nauseating terror - in case next door go on a pruning spree. Please don't!!

the struggle

I would like to write an entry for this Wednesday's walk...but I am struggling for inspiration. This is not a new thing by any means - I frequently struggle for inspiration, have struggled for inspiration - so perhaps this post could be valid after all.

I have always been creative, as a child drawing and doodling, making up stories, writing down stories, begging my sister to tell me stories (which always had a Lucy in them). For many years I simply assumed that I would, in fact, write stories always. The trouble is, I always get stuck. Something unnameable gets stuck in my throat and then - how do I write my story?

I used to want to write a novel. To be honest, that ambition has fallen away from me. I would still like to write, but...

This tiredness that I have to bear, have had to bear for what is now over half my life - it gets inside my head. My concentration slips, my memory closes down, and the weariness gets soul deep.

I first started suffering from CFS/ME at the age of 14. It's tough to deal with as a teenager - I couldn't stand the divide it put between me and my peers - and the lack of understanding I found in those of my own age group. It was a vicious cycle - the more misunderstood I felt, the less I enlarged on what the problems were, and had no wish to be identified by this thing I never asked for. So desperate was I not to become labelled by it, I volunteered very little information. I don't think I would have known what to say even if I wanted to.

At first, my friends were understanding, but prolonged absence and the resulting distance made it more difficult. I clearly remember two of them talking in front of me about how they couldn't just stay at home all day, how they would have to get out and go to school and see people - and I just felt clenched. It wasn't something I could control. I just sat there listening, and feeling the exhaustion that they didn't understand, feeling it dominate my life and dictate my actions.

There were these little moments of teasing about how often I wasn't there. The moments weren't all the time, but they were enough. Do you think I want this? Do you think I don't hate it? Do you think that what you're saying isn't clobbering what little confidence I have left in myself? Gradually I stopped bothering to explain anything. I didn't have the coherency, anyway. What do you do when your body betrays you?

It's not like that now. Thankfully I haven't felt misunderstood in that way for a long time. People accept it, even if they can't grasp it, and support my decisions. But I still hate having to say it, to explain it. When something dominates your life, it's hard to describe yourself without it. I am less stressed about doing so than I used to be. But. I love meeting new people by nature. Often I dread it, simply because of the elephant in my head, that will have to come out, and explain why my life cannot be easily labelled and pigeon holed.

But would I want it to be? Although this is a bad patch now, I think exacerbated by the medication I am on for my head and neck, there have been good times where I have felt relatively well. There have been times when I have known healing. The last few years' relapse has held quite a sting for me at times. I'm still waiting for the new healing, but it hasn't come yet.

Perhaps without it I would not know what I do now, see what I have seen, learnt what I have learned. Perhaps I am kinder, wiser, softer for it, not inclined to be judgemental, always wary of labelling others - distinguishing people for who they are, not what they do. Perhaps. Sometimes I think - have I not learned this lesson by now? Can't I try a little living without it? Does that sound sad and pathetic?

I didn't intend to write about this at all, and I'm not sure it fits the topic, but there you are. What am I supposed to be? I still feel, as I stretch my life around the fatigue, segment my days in order to control it. The fact is at 14 years old I never once imagined I would still be dealing with this 15 years later - and this last relapse has been one of the worst.

I feel I have no right to complain, and I probably don't. But sometimes...I have to say it somewhere. We all need to scream, occasionally, metaphorically or not. We all need to open our hands and say: this is how I feel, right or not. I want to be better.

The fact is I can't remember. I can't remember what it feels like not to feel tired. I can no longer judge what is 'normal' as far as energy or strength or healthiness goes. I feel as if I am stretched so thinly - and not because there is so much to stretch over, but because there so little to stretch over with. The fact is I am afraid I will never feel strong again.

I started trying to explain why I struggle to write. This is only part of the reason why I struggle to write, when I desperately want to. But it is part of the reason I struggle to do a lot of things, when I desperately want to. But I am not the only person to struggle in the world. I am only one of millions.

Cry freedom then, for those who are wrapped in chains, much heavier than mine.

Today: 5/10, medium

shackles

feel like I could break in two
burnt by useless tears
straining at the shackles of my tiredness
wishing life could take
a different shape

shafts of light

To me, it seems, this is what hope looks like. Am struggling a little with feeling so grotty all the time; trying to be content with my circumstances and sometimes succeeding...sometimes, not. It becomes difficult, after such a long time, to imagine things will get better - that I will get better. I don't mean that in a self-pitying way but simply that, after struggling with this for over half my life, it naturally becomes harder to imagine ever being without it. I would be happy with improvement, not cure. I would be happy to be in a 'good patch' not a bad one. Stamp this picture on my heart and let it grow...to see it in the distance would be enough.

Today: 3/10, high