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.

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

on throats and thoughtlessness

After yesterday's suspect rough throat I woke up today finding it hard to swallow.  Can no longer blame it on a manifestation of tiredness, methinks, although sometimes I do get sore throats when I'm tired.

Got out of bed, took decongestant and had a Strepsil moment; am feeling marginally better although throat is very irritating - that rough, uncomfortable sensation that makes you want to frequently swallow - and then wish you hadn't because it hurts.

Am cancelling today's dentist appointment (or rather Andy is, so I don't have to rattle over phone), as it seems somewhat impractical to lie in dentist's chair with mouth open in current state. Also, do not want to gag germs everywhere.  Which is always my second consideration - I don't feel it's merely my responsibility to look after my own health but also the health of others - breathing germs unnecessarily over general public seems somewhat thoughtless of me.

So, I shall watch my progress today in order to ascertain if it is appropriate to have my remedial massage tomorrow - if it develops into full blown cold, snorting and snuffling on a massage table seems hardly practical, either.  If I'm unsure I will text her and ask if she minds me coming in with germ-carrying potential.

Obviously, as a person who works (in the main) from home, I have more flexibility over this kind of choice.  My 'appointments' can be changed more easily.  My throat is not so bad that I would not 'go in' to work if I went out to work (mixing up my ins and outs - outrageous!) but I do believe there should be limits.  If I insist on sharing my germs with people just to prove that I-can-keep-going-no-matter-what-the-consequences I feel that is somewhat careless of me.  Literally, without care of those around me.

So you won't find me streaming and hacking at you if I can possibly help it - for your sake as much as for mine.



Image from stock.xchng - until I can be bothered to take a picture of my own lozenges.  Shocking that I haven't, eh?

the tendency to slide...

Battling weariness these past couple of days.  As I write this, the anti virus software has decided to run a full system scan, which I've minimised.  It's running in the background, slowing things down.  Perhaps I am running a full system scan.  Now there's a thought.  I hope it finishes soon and manages to fix any problems!

Unfortunately this has resulted in some brain fog, and a limited ability to write.  This morning I was at the eye clinic at the hospital, which sucked out most of the morning and pretty much all of my energy with it.  I think these appointments will soon come to an end however - they'll be making up my new glasses soon and have decided my eyes are doing very well.  The orthoptist did her usual here-there-everywhere tests to work my eyes as hard as possible; apparently the results were very satisfactory.  My eyes naturally want to slide inwards; we're trying to train them to hold themselves straight, without surgical intervention.


This is aided by the prism in my glasses, but I've also been doing exercises to strengthen the muscles of my eyes, which make them do what they don't want to - go the other way.  It reminds me in a very physical sense of the hard work required to reverse a habit.


Our reflexes want to react in one way, but we want them to behave differently.  We need things to help us change, but we also need to make an effort to re-train ourselves.  Re-training can be painful and difficult.  But it makes a difference.  We are less likely to slide into our old routines.

I've realised my eyes are stronger for it.  They are less likely to look inwards, more likely to look straight  ahead.

Just as they should.


Glasses image from stock.xchng

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of knots and polka dots

Went for my third remedial massage this morning.  The room is actually housed in the facilities of the local cricket ground, which are often used for conferences.  I got there rather early, so decided to have a coffee from the bar/Costa.  I had to sit down at a vast round table for ten, which was quite amusing.  There were others doing the same with their laptops/netbooks/macbooks.

I got out my pink polka dot mini notebook (I mean an actual paper notebook) and wrote in that instead, which seemed rather a contrast to those around me. (I do have a netbook, but as a rule I don't take it for a massage...) The fact of my pink polka dot-ness amid all the professionalism made me smile.

There was a training day taking place, and when they all came out for their coffee break I quickly drained my cup and nipped to the loo while it was still free (writing this immediately reminds me of that infamous Google search where someone typed 'help I am desperate for the loo' and arrived on this blog, which was rather worrying).

The massage was interesting, as she was trying to break into a very solid knot.  She said as she was doing it 'I really need to break this down.  I think it may be what's pinching the nerves in your neck'.  This immediately drew my attention. 'Hmm,' I replied.  'I have a feeling my headaches may have started after that knot appeared.'

On arriving home, I typed 'knot' into the search part of this blog and found the relevant entry, on 22nd November 2007.  ('A new knot for Christmas,' I say.)  This raised my eyebrows reading this, as I was sure my headaches had begun intermittently around December 2007, before becoming constant in January 2008.  (Long term readers will be aware of my shoulder/neck/head problems.) Sure enough my first mention of 'constant' headache in this blog is in early February 2008.

An unexpected benefit of blogging - keeping a record of things of which, at the time, I had made no distinct connection.  Although sure my headaches were to do with the knottiness, I had not registered the time similarities of that knot in particularly.

Fascinating...

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.

on depth and riches

Over the past couple of days I've been doing research into issues regarding the Trinity, in response to a booklet I've been given. The last weeks have been studying the bible and gaining a greater understanding of my own beliefs and why I believe them; these last couple of days I've been going back to early Christian writings to get a sense of what the earliest 'Church fathers' thought.

In this focus, other topics have been temporarily shunted to the side; I've not done much writing or work on anything else. Momentarily, yesterday, this caused some anxiety - but then I decided that looking into the 'deep things of God' can never be a waste of time. I know that many of my friends would love more time to study and struggle to find the time - having the time they long for can make me feel over-privileged in this regard.

Of course, the irony is that the reason I have the time is because of my limitations, my circumstances, my health. Frequently when my head starts spinning and I need to collapse I express pure frustration that I do not have more energy - but of course, if I had more energy I'd probably be out somewhere else, spending that energy elsewhere. I remind myself that God uses our weaknesses, and that he can bring beauty from ashes, and turn problems into privileges.

For those of us who suffer from a poverty of health and of energy, knowing that there are still riches to be found, treasures to be unearthed, is hugely encouraging.

We work within our limits; we discover a limitless God.

me, myself and I

Last week we had the opportunity to go and hear Dallas Willard speak in Swindon (which I mainly equate with Jasper Fforde novels - and yes we did go on a Thursday!)  Talking about 'private religion and public reality' I scribbled manic amounts of notes, which I must type up so that they don't simply end up buried in my notebook.  I'm sure many life changing words are buried in the notebooks of life.

Really enjoyed a bit of deep thinking and reflection, particular in the area of knowledge and faith, and how often Christianity emphasises Commitment and Profession (of faith) over faith based on knowledge - to its detriment.  There's much more to chew over, of course, and if you're really interested, I can go into it in some more detail another time.


Had a neurologist appointment this afternoon over what they call my 'chronic daily headaches'.  Was rather a long wait (an hour and a half in a waiting room on a day as warm as this is an interesting experience), but I got in eventually, and appreciate the time she took over the problem.  (There's always two sides to it, isn't there?)  I've not got much to take away except the suggestion more physio would be helpful (something I knew already but was helpful to be officially supported in that) and taking me off painkillers for now.  Just in case they are perpetuating the headache.  Since I'm not a painkiller fiend I doubt this is so but I willing to give it a try.  I just hope my hip pain doesn't flare up - that's hard to manage without painkillers and I don't relish the prospect.

She (registrar to consultant neurologist) suggested some possible medications which she will also communicate to my doctor.  But I've decided not to go down that route for a while; I've already tried all the usual suspects, and as it is pain management rather than cure I want to try and 'manage' it meds free.  Not that any have worked, anyway!   She also checked all my reflexes and things with her little hammer.  Quite amusing.  Then she started pricking me to check the feeling in my arms and legs.  Lovely.

Preaching a sermon next Sunday so finishing that up, although the bulk is done now.  As long as I don't throw up over the front row from nerves it'll be fine.  Sit in the front row at your own risk.

 I don't get mentally nervous, as I think I've mentioned before.  My heart rate and stomach betray me.  Silly things.  Hissing at my stomach 'what the heck is the matter with you?  I'M FINE!!' does not, alas have much affect.  Ah well.  Never mind!

everlasting arms

Last week was characterised by headache horrendous...am feeling somewhat fragile. Nevertheless, I want to re-boot my writing; I'm afraid I just couldn't manage it last week. I've decided to withdraw from some weekly activities I was previously committed to, as I was so tired by the time I got to a 'writing day' that not much could be eked from my energy-lacking state.

After my intial frustration and anxiety, I feel calmer. I have learned, many times, that God travels with me through light and darkness, and when my strength shrivels, he draws near. I know also I need to be willing to recognise him! So often we grieve over that which we do not have - whether it is the loss of something or the wish for something we have never attained - sometimes that grief becomes a habit that we sink into almost involuntarily.

A very much beloved kindred spirit has set up her own blog and called it 'treasures of darkness' which reminded me immediately of my own affinity with that particular verse.

I need not be frightened of the dark, for God goes before me and follows behind me, stays beside me and hovers below me. My eternal net of safety, whatever the struggle I face. I do not face it alone.  Once I understand that God is my priority and my passion, my perspective-maker and potential-former, the grief recedes into peace.  Whatever else, he is there, and despite my own shortsightedness, he will not lose sight of me.

Underneath are the everlasting arms.

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

a hint of the coming season

This morning, I heard spring.  I was placing a book on a shelf and heard the cheep of sparrows.  At the same time, a shaft of sunlight touched my cheek.  I don't what it was - the timbre of the sound, the softness of the air, but I felt a thrill of recognition.  Birds sing and cheep all through winter in our garden, but it felt different.  The bathroom window was wide open as I'd been cleaning; the breeze that drifted through held the promise of a whole new season.  It's only February, but today I heard spring.  I remembered what it felt like - the balm of the sunshine, the joy of the birds, the gentleness of the breeze.  I remembered that over the next few weeks, a change will take place.

On a somewhat more trivial level, it's still mucus manor in my neck of the woods, but I'm now on antibiotics.  Hopefully it will start clearing up in the next few days.  The congestion I can cope with, irritating as it is; it's that awful stinging pain that makes it so difficult.  Bending over to clean the bath this morning was excruciating.

I'm working on various bits of writing, at least as much as I can with my aching head and stinging face; this coming weekend I'm also leading the evening service (Communion & Healing) at church.  It's been a little while but I'm praying God will use my weakness (and weary sinuses!!) to be a blessing.

Yes I know it says 2009 on the photograph...the 2010 crocuses are yet to come!

sniffing and snorting

Am currently struggling with extreme sinusitis.  Haven't made it to church this morning; keep having to scrunch up my face with the pain, eyes watering constantly.  Sniffing and snorting comes with the territory. A bit annoying; I'm supposed to be assessing how my headaches are off medication - this, of course, makes it difficult to tell.  It'll be the doctor for me tomorrow if this continues - it keeps getting worse, not better.

Anyway, feel yukky.  Just thought I'd say so.

"what am I doing here?"

Yesterday afternoon some of us went out to a care home to lead a service there.  It felt good to get out in the community and do something like that; church in action as opposed to within the same four walls.  I'm keen to be involved. The service was appreciated and it was good to see some of the residents humming and smiling.  Many of them suffer from dementia type illnesses, and you can see the confusion frequently pass across their faces.

One lady I spoke to afterwards was very distressed. 'What am I doing here?' she asked me.  'How did I get here?  Why aren't I at home?  I don't know anyone in this room.'  Trying to be soothing and distracting her with cheerful remarks only worked for so long; in the end I was rendered mute by the fear and panic on her face.  'Can you tell me where I'm going?' she asked me pointedly and repeatedly.  In the end I led her to one of the carers, as they would know where she would normally be as far as the home was concerned, although I felt inadequate to answer a question that had no appropriate response.  She needed a response, even if it was just leading her across the room. I was struck mostly by the fear created by her illness - more than mere confusion, panic widened her eyes, and I ached for the terror she was feeling.

Lord, remember those who can't remember themselves,
who do not understand why they are where they are
who cannot be comforted as the answer lies
in something entirely forgotten.
Help us be comforters; help us show your peace,
despite not knowing the answers,
may we soothe their fear with your perfect love.

changing viewpoints

Having moments of real frustration with my headaches, especially as I am so enjoying my writing course. But of course bending over a piece of paper, reading, and looking at a document on the computer all aggravate my head when its in full-on ache mode.

I am seeing the doctor this afternoon; I don't really know what to tell her. However she was going to contact the neurologist for advice so it will be interesting to learn of anymore suggestions. I have my eye appointment at the hospital on Nov 9th, which I'm waiting for impatiently. I'm hoping that by sorting out the prism in my glasses and working out how much help my eyes need to work together, this will at least eliminate one headache factor.

In the meantime, I'm trying to build up my fitness by having short walks everyday and generally being a bit more active. Since my fatigue is not too bad at the moment (yay!) this is more do-able. I think it's worth making myself feel more healthy in other ways. Plus, in one fell swoop, I have signed off cakes, biscuits, chocolate and such like in an attempt to really help my body sort itself out. It sounds drastic, but I know in order to decrease something in my diet, I have to go cold turkey for a while. I've even decreased the amount of bread I eat (hard for someone who adores toast!). When I get the nibbles (I have the nibbles a lot) I put my hand in the fridge and pull out....a bunch of grapes.

Having the writing course seems to have motivated me in so many different ways. My life feels more structured (I've even drawn up a loose weekly timetable), and full of possibilities. Strangely enough, I am so grateful that I did give it up a decade ago...simply so I can take it up now - when I'm so much more aware of who I am. It goes to show, what we think are failures can bear fruit later - and we simply don't see the big picture. So often looking at circumstances in my life from one viewpoint is in fact misleading - as time passes and circumstances shift, suddenly there is a hint of shining purpose.

Even so, I could do without the headaches please!! :)

updating...on me

Ah, me. A little behind with blogging. Still battling with headaches - yesterday afternoon appalling; I'm limiting time on computer. Do need to type up some assignments however. Very much enjoying the course, and surprisingly full of ideas. Long may they continue to flow!

About to enter my 3rd decade but not particularly worried about the fact. Being the youngest of 5, I would never get away with making a fuss about it (in the negative sense) anyway! For me it feels like a fresh start, and I feel incredibly positive. A new decade, with new goals and new adventures.

Hopefully I will be back to blogging a bit more frequently soon, in between other bits of writing. But I have to say those 'other bits' are my priority for now. I have converted my crafting table into a writing desk...

I do wish the headaches would disappear but in the meantime I shall do what I can. At least I seem to be managing the tiredness reasonably well (but it's never good to make that assumption too much - makes me complacent and then I overdo it!).

I'm not reading many blogs due to my head so apologies if you haven't had any foolish comments recently. Hopefully this bit of patter will make up for it a little...

where am I?

Just to say I am still alive! Am still struggling with headaches, and Andy is on study leave so is using the computer a lot. I don't mind - have been doing some creative bits and pieces (as well as nursing my sore head!)