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.

wishing

h/t Broken and Beautiful 

orginal source: ASBO Jesus (as if you didn't know already!)

Ich spreche Deutsch...sort of

WELL, AS I intimated in an earlier post, I am currently learning German.  I'm doing so via Babbel.com and finding it a good way to learn - I took advantage of a Groupon voucher and got six months' worth at a discounted price.  As I go quite fast this means I can get a lot of learning in for what I've paid!

I do have an elementary though rusty grasp of French - but when called upon to speak it I have very little confidence. I decided to start with German because I want to be able to read it - especially academic writing. Okay, so telling the time and asking you where you're from won't help me tackle German theologians yet, but I have to start somewhere!

My sister is learning French, and for fun I am attempting to email her in French to try and practise. I arduously composed the first one yesterday with constant help from my dictionary, and although I'm certain it was full of errors I was pleased to discover I could understand everything in her reply without looking at the dictionary once!

Once I've whetted my language appetite it seems my enthusiasm increases for all of them. I'm reading about the brain at the moment for research purposes (a lot of my book entails my thinking about thinking!) and I'm fascinated how our behaviours, be they physical and mental, have an impact on our brains -  creating changes at an anatomical level. No wonder the more you do something the easier it gets; your brain is shaping itself accordingly!

I'm enjoying learning a language from scratch and discovering the differences, such as the fact that where English would say half past eight the German effectively says half (to) nine - so 8.30 = halb neun, not halb acht. Different endings and articles don't faze me in the slightest since learning NT Greek.  Have to remember to capitalize all my nouns though...

I do have a link from Babbel for a week's free language learning if you wish to try it out.  Being the conscientious type (as attested to in many school reports) I checked with the support team if it would be all right to post it here and they said yes.  I also tried to clarify what you would have access to - as I wasn't clear whether it would be any language or whether you'd be stuck with German just because I am.
They said:

The link will give your friends access to any one of the languages we offer, not necessarily the one you are learning. It all depends upon which language is currently set as the learning language on their Babbel homepage.

So...perhaps it's best to sign up at the website first (there's no cost involved in that) and set your preferred language before following the link?  If you try it, let us know how it works for you!

Here it is: http://www.babbel.com/?code=21291048537

Auf Wiedersehen!

Ascension links

In light of my post about the Ascension last week, I wanted to link to this wonderful post from Maggi Dawn - love it:

Whichever way you look at it, the work of Jesus was to transform us and the world we live in by infusing everything with the presence of God. Heaven meets earth; earth is drawn into heaven.

Lots of bloggers posted about the Ascension - I liked this one over at the Vernacular Curate:

It is easy for us in twenty-first century internet underwritten enlightened life, with books and articles written in their millions, to take all this stuff on the chin. We know all of this because the Bible tells us so. We know how the story after Jesus will pan-out, for a couple of thousand years at least, because we have the benefit of hindsight. 

So consider the Apostles. Consider the Marys. They had no Bible. They had no benefit of hindsight. They had a great big Jesus-shaped hole. 

The Reluctant Blogger also has a Ascension-oriented post that made me smile.  The idea of the church seeing Jesus in their pomegranates I found particularly entertaining...

And this silly faith does speak.

It speaks to the dictators and corrupt bureaucrats of this world, because there will be judgment. It speaks to those who suffer and can find no release, because there will be healing. It speaks to the greedy, because they will lose everything that matters to them. It speaks to the prejudiced, the unforgiven and unforgiving, because there will be reconciliation. It speaks to the fearful, because there will be light.

It also reminded me of our own visit to the shrine in Walsingham while we were on holiday.  Maybe it's my non-conformist leanings but I found the chapel very overpowering and suffocating and had a severe case of over-iconitus. I found nothing peaceful or Christlike about it, instead it felt cluttered, oppressive and gaudy. At least, it did for me! I have a feeling I meant to write a blog post explaining why but didn't get round to it.  Oops.

Oh, all those blog posts I've never written...

da da da da da da? da!

Lynn over at help I work with children has reflected on the following clip:

Personally it made me think of the times when we use words without meaning - just using the force of our voices to get across a point, or some dense jargon, not realising that to others it sounds just like da da da da da da da.

That's using it as an analogy, of course - as it is, it's a marvellous example of mimicry.

(I also couldn't help noticing the socks!)

Check out Lynn's reflections here.

a little bit of linking

I kept meaning to compile a list of what blog posts I found helpful / insightful / interesting in April.  Of course, there were lots of them and I kept forgetting to take note of them.  However, since they will be horribly out of date if I don't post them now, I'll list the few I remembered to note, for my own sake rather than yours!

• A New Name - what's your net worth?  -  Emma writes a variety of fantastic posts.  It's well worth checking out her blog.

• A good post on changing our internal monologues by J.R Daniel Kirk: 
Who you are, at peace with God

• Nancy talks about a dangerous metaphor in Shepherd and Sheep

• I love Jim Gordon's blog, Living Wittily.  He communicates things so beautifully.  Check out Why it's life enhancing to creatively and respectfully disagree as a taster

• A very astute post which reflects what I think most of the time - we can't see body language or tone of voice when reading the written word.  Craig Benno describes this nicely in Would we understand scripture differently - if the writers used emoticons?

• And for Twitter lovers, checkout Life, the Twitterverse and Everything over at the delightful Beaker Folk of Husborne Crawley 

Happy Thursday!

fire!

It’s Pentecost Sunday and we did something rather different in the service this morning. We are required to have a fire drill in the building once a year, so Andy and Rob incorporated it into the service. Andy was reading the passage from Acts where it talks about the rushing wind and tongues of fire – and then the alarm sounded, so everyone had to get up and troop outside. Very effective, and made me smile, too!



I should say here that Mrs M has also awarded me the Kreativ Blogger award in her recent post, so thank you Mrs M!

I have also been awarded the Lemonade Stand, or ‘Attitude of Gratitude’ award by two bloggers, Sarah in the Woods, and Kathryn – thank you so much! It’s taken a while for me to officially accept the award – how ironic if I forgot to thank them for their ‘gratitude’ award! I will try and update this post at some point with bloggers who I feel deserve this award (pictured).

The sunshine continues…

"kreativ blogger" award

I have received my first blogging 'award' from Lora- how exciting!

It comes with the following instructions:

1. Post the award on your blog, and link to the person who gave you the award.
2. List seven things you love.
3. List seven blogs you love.
4. E-mail or comment on those blogs to let the people know you've given them the award.

Here goes...

Seven things I love:

1. Learning about God and getting to know him better
2. Relaxing with Andy
3. Spending time with friends and family
4. Taking photographs
5. Nature and wildlife watching
6. Making things (e.g. cards, scrapbook pages...)
7. Colours - I love colours in our garden and the natural world (see #5) and capturing them on camera (see #4), and I love colourful papers to use in crafting (see #6). I love it that our world is so full of various colours - it's wonderful.

Seven blogs I love:

This one is quite difficult. I love more than 7 blogs! But I will select those who I think will appreciate having an award, and also have a 'kreativ' aspect!

1. Lynn over at help I work with children. I reckon you need quite a bit of creative thinking to be a children's and family pastor!


2. Brunette Koala over at Learning from Sophie. Currently promoting 'The Art of Joy' with random acts of kindness, among other things. Check out her blog for more details.


3. Bring on the Joy - last I looked, she wasn't feeling very well. Hope you feel better soon, BOTJ!


4. This one goes to Art in the Wind - thoughtful musings from a fellow rabbit owner!


5. The entire "bunyard" at Furrybutts. Gorgeous rabbits, lovely photographs.


6. Artistic Abigail over at the newly named Rear Window: Observations of 32nd Street. Great new blog design, too!


7. Last but not least, AngelJoy over at Hippychick. She has a beautiful blog.

***

It's Andy's birthday this week and his parents are coming to see us this weekend, so am getting guest room ready. Feel absurdly excited at the first use of our new guest towels (!) So I may not be posting much until next week.

Garden drama - the increasingly resident goldfinch pair were very indignant this morning at the arrival of a third - went into frenzied pursuit.

Today: 4/10, medium - high

walk down memory lane: Lucky

I wanted to take part in this as I thought it would be good for me to record some of my memories – these days I feel so forgetful sometimes. Life seems to hurtle by and the days come round again so quickly – so today I will tell you a simple story of something that happened when I was 8 years old. It’s a loooong entry – so forgive me if it is too long.

We had quite a menagerie when I was a child. I was used to cats, dogs, hamsters, guinea pigs, rabbits, budgies, geese, chickens, and my favourite: ducks. Specifically they were Muscovy Ducks. Some people think that Muscovy Ducks are ugly, with their funny red faces, but I grew very attached to them and always thought they were lovely. Some other people confused them with geese. My uncle and (male) cousin took one look at our drake, Sir Francis Drake (aka Frankie), and turned tail and ran, leaving me bent double with laughter - and Frankie wondering what all the fuss was about.

At this time we had three: Frankie and two ducks, Sophie and Sonia. It transpired that Sophie had laid eggs. With my enthusiasm for ducks no one was allowed to eat the duck eggs (!) The chicken eggs were okay because there was no cockerel. I knew my stuff - if there was a drake, there were possible ducklings. And, there were.

Except one. One poor lonely egg, left in the nest. There was a tiny beak poking through the crack – but the duckling got no further. The other eggs all hatched, but not this one. It stayed there, with that tiny beak. Sophie eventually gave up, and took her ducklings off for food and water.

I was very distressed, and begged my dad to help it. He was very dubious. Still, we took the egg back to the kitchen. It had been so long in its state it was obvious it would get no further. We did the inadvisable, but last option, and helped to break the shell.

She lay, damp and weak. It was evening. We fixed up one of those red lamps and she lay inside an oversized ice cream tub. We left her overnight. My parents did not hold much hope for the weak little bird.

In the morning, I rushed downstairs to see what had become of our little one. My parents had carefully not looked over the edge of the tub (but they knew what was in there) – they knew what I wanted. I looked over the edge, and there she was, fluffy and bright eyed, staring up at me. Me. The first thing she saw. And the imprinting took place. I dubbed her ‘Lucky’.

After checking she was fed and watered, I was eager to see how she would respond. I went into our smaller sitting room (it was always called ‘the study’ – I think that must have been what it was originally). I placed her in the corner in front of the television and walked to the other side of the room. I turned to call her - but she was gone. I was aware of a soft, warm pressure on my foot, and looked down, to see her sitting on top of my shoe, looking up at me. I hadn’t needed to call her – she had followed me across the room.

Lucky slept in a woolly hat on top of a hot water bottle in the airing cupboard. She responded well to all of us, treating us all as family. There is a lovely photo of her standing on my brother David’s arm, peering up into his face, nose to nose.

It was summer, so I was off school. I would put out my ‘My Little Pony’ things and she would peer at herself in the mirror. I would pick her up and hold her against me in one cupped hand, using my thumb to stroke her head where it met her beak – this seemed to soothe all our ducklings – and she would close her eyes and nestle against me. She still liked to sit on my foot.

When I went back to school or couldn’t be with her, my mum would put her in the pocket of her apron, where she was perfectly happy. When she wanted me, she cried. Her cheeping would grow urgent and distressed, and had the ability of halting me in my tracks. I developed a maternal instinct - for a duck. One time we were going to visit my sister, then over an hour’s drive away. We had no choice but to take Lucky with us, in a cardboard box. We sat by the canal and had a picnic. A family outing, with a duckling in a cardboard box.

One day my parents gently explained to me that we just couldn’t keep her in the house forever. I was back at school, and she needed to be with the other ducks. It was a difficult transition – for the little duckling, and the little girl. We went one day up into the shed where the other ducks and her brothers and sisters. They happily wandered about. Lucky sat on my foot. Sophie tried to tuck her under her wings but Lucky would have none of it. My dad put her in the shed and we went out. We’d barely gone a few steps before the wild cheeping started. There was no way I couldn’t respond. I remember my feeling of utter distress. The attempt was a failure; I went back and got her. My dad was dubious about how she would cope with the shock of it all. But she did what she always did, and recovered.

In the end we would put Sophie and the other ducklings in our huge rabbit run on the front lawn. We would put Lucky in it for pockets of time, gradually increasing the period she was in there with the others. I would be within sight, but not reach. Initially she flung herself at the sides of the run, gripping it with her feet and flapping the tiny stumps that were her wings. I would have to rein myself in - resisting the urge to go to her. But she got used to it. So very quickly, I realise now, she adapted and immersed herself into her real family.

It got to the point where she was no tamer than the rest of them. The ducklings would all cope well with me scooping them up to hold them, but she did not come to me in the same way. She was a duck now. A real duck. It made me sad, though she was, of course, better off. I had to let her go.

Later, much later, I had to let her go again. It was my choice. The last of the others had gone, we now lived in a smaller garden and she was alone. I agreed she should go and be with other ducks – with more freedom of space. The new owners were almost as distressed as we were – ‘can’t you keep her?’ they asked, but I was adamant. In the car in the way home, a teenager now, I suddenly started to sob painfully. My parents would have turned round and gone back, but I refused. I had to let her go. I hope I was right – I hope she was happy. They said they would tell us if she ever had ducklings. We never heard anything, but I hope she did.

I always remember the feeling of her. The softness in my hands, the sound of her calling, the coolness of her webbed feet on my arms.

Lucky – the little duckling who defied the odds. She was only a duck - but she once believed an 8 year old girl was her mother.

Today: 4/10, medium

Charlie's moment of fame

He's gone and done it. Charlie is the official 'Disapproving Rabbit' of the day. Check out the entry here. He is extremely proud, of course, and would like to thank all his loving fans.

I, meanwhile, would like to thank people for their kind comments on my previous entry. I have managed to have a positive day in spite of such weariness. So thank you.

Now, go check out our rabbit!! :)

bye bye Bush

Somewhat more frivolously than my previous post, I direct you to this , where you can find some Bush-isms to enjoy, now that we will no longer be experiencing them (on a large scale, at least) and links to further websites.