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 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.

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.

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!! :)

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.

yawning time

I know it's Wednesday and I'm supposed to be walking 'down memory lane' but I'm afraid I'm a little too weary today. I know I've not been writing much lately; I just don't seem to have much to say, and when I do, forget to say it. Such is life. Andy is out tonight (one of those weeks, out every night except Friday) so I am trying to be "constructive" with my time but the pressure of being "constructive" is making my eyes glaze over slightly.

...yawn...

Sometimes it would be nice to carve out a piece of time and simply curl up in it, and then when you feel up to it 'resume normal service' and life, which would have been conveniently on hold, would start up again. But only when you are ready.

...yawn...

I've just remembered I need to feed the rabbit.

rest

The current Salt challenge is rest - here is the scrapbook page I made for this theme.



I think on the nature of rest quite a lot these days, since I have these scheduled rests as part of my Occupational Therapy programme for CFS/ME. It makes me think about how we rest - what we consider rest to be - what is restful, and what is not. My routine stipulates that these times should be deeper rest than I might otherwise choose to have - calling things like reading, drinking a cup of tea, watching the TV, low-level activity. Actually, I find it hard work to rest in this way, which is actually rather ironic.

We find it hard to stop and be still. We find it hard not to have something to look at, engage with, think about. Well, I do, anyway. What about you?
We also get caught up with today's idea that success is all about what we achieve - and we easily think of rest as necessary - but not particularly constructive. Well I do, anyway. What about you?

We forget that the reason for the Sabbath day in the Old Testament was rest - pure and simple. It was a time when people stopped. Just stopped. And it also made allowances for those who did not have the same control over their lives - servants - even animals. They all got to rest. Jesus himself said that the Sabbath was made for man, not man for the Sabbath. It was beneficial for the creatures God had made.

We may not keep the Sabbath in the same way as under the old covenant, but I think we need to retain the principle. People need rest. All people. We all need time to recharge. We need to learn to see that rest is a constructive thing - not a thing to get through so we can get on with the rest of the 'to-do' list. Not a thing we should feel guilty about. We get frazzled, particularly in a climate like ours, where expectations are high and achievements praised, where we are constantly looking for the next entertainment, the next distraction.

We have forgotten how to quieten our hearts. So perhaps this verse is in fact very apt for us. Come to me, all you who are weary and burdened, and I will give you rest.

Lord, teach me how to sit at your feet again.
Teach me how to listen.
Teach me how to simply be in your presence.
Teach me how to let go of my burdens and carry a different, lighter load.
Teach me how to rest.
Teach me to stop following the expectations of the world and society and culture and other people and myself - but instead to follow yours.
Finding that they, after all, are the lightest, kindest of them all - for you understand my needs as a whole being - body, mind, soul all wrapped together - and give me that shalom - that wholeness that leads to a healthy approach to life in this world.