Saturday, 21 January 2017

TED talk on ME by Jenn Brea

It's nice and easy to listen to, she has a lovely gentle voice, and no applause (they waved instead) cos she's noise sensitive. It did make me cry when she got to various bits, especially about people not being who they were, but well worth a watch.

If you aren't up to moving pictures, there's a transcript. There's also annotations, and she has a website with lots of info/ support links on it.

The TED Talk is HERE

Wednesday, 9 March 2016

Some thoughts on Pain

Note: This is draft, I'm still working on it. But I've added it cos today I've come across 2 people who might find it helpful. Pictures and spell check and tidying up for making sense will happen eventually

Pain is something I never really thought about before I got ME/CFS. It was something that happened only at specific times, like bashing my elbow or falling off my bike or my pony as a child. It had an identifiable cause and effect (I bang my elbow is the cause, with an effect of pain where I banged it) and was real in that it was related to some specific visible damage to my body, and acute, in that it hurt, then it healed and decreased accordingly.  In short, basic over the counter pain killers worked.

Then from around 2005 onwards I was assailed by different forms of pain. The first being random pains that either had a specific origin say my leg or arm, but no apparent cause (rather like those mystery bruises we all get sometimes, they're there but we don't remember walking into anything.)

Tuesday, 16 February 2016

All that 'giving up' and doing things differently

Back in 2007 when I was diagnosed, I ended up on the PACE Trial, randomised onto the Cognitive Behavioural Therapy course of treatment. The therapist was a nice enough chap, except for his habit of asking me a question, me answering and then him keeping asking what was behind my answer.  He kept doing it despite us both being flummoxed, as, seriously, I'm just NOT that deep a thinker! There's nothing deeper in my emotions than my first response, I'm really very shallow!

Anyway, one rather more useful repetition of his was - How can you do things differently?

To continue having interests in life, but that don't eat so much energy (mental and physical).

It's a small question. But a very useful one, whether you're mild, moderate or severely affected - because everyone who has this illness, they have to 'give things up'. It can be a 'little' thing like walking instead of taking the bus, going out and socialising less often, or a 'big' thing like being able to wash themselves or go to the loo, have a shower or even eat & drink.

Often it's a relentless succession of giving up. Within a matter of days, weeks, months or years, one ends up having 'given up' so many things that it feels like there's nothing left.

Belleville Rendezvous animation - can't cycle? watch cycling instead...

Wednesday, 3 February 2016

More breathing - abdominally

I have to say that it's come as something as a surprise to me that there's a wrong way and a right way to breathe.  It's not like it's something one was taught in school, it's something you pick up on pretty quickly at birth and, well, just keep doing if you want to not have death looming at you like an oncoming steam train!

I blogged a while ago (years?) about Fiona Agombar's relaxing before getting onto breathing exercises. Then never actually got any further.

Taken from the web cos it was pretty. I know nothing about the site it came from - but they do talk about breathing
 Recently I went a bit wonky spinewise (I may have mentioned this several times already) and inveigeled a very nice man called Paul who is an osteopath to come and see me in my house. He's also a naturopath. I'm not sure which bit of his practice the breathing comes from, but as he's somewhat holistic in approach, his practice probably doesn't have bits.

Anyway. It turns out that if you spent most of your time not moving, like me, your body doesn't work very well. Because the human body was designed to have things like gravity and movement help it to do the things it needs to do to function properly.

Creamy Cauliflower Kashmir Curry - time (30mins) eating (easy) skill (easy)

They're like buses these posts, none for ages then 3 come along at the same time. Ish.

Anyway Wednesday is cooking day. This recipe is from an old Weightwatchers book called Spice Up Your Life. I do like their recipes, they work and they taste lovely, even with their low fat and sugar substitutes, though I generally  ignore the those and use normal ingredients, like fat and sugar.

Talking of sugar, the osteopath/ naturopath has been encouraging me to stop eating sugar, and get calories from actual fats (like butter, lard, coconut oil etc) and to only use liquid oils as dressings or at the end of the cooking process so that the fat doesn't go solid when it takes me hours to eat my food - because globs of cold fat aren't too great! Anyway, I staggered onto the scales the other day and appear to have lost 6lbs. Just through not eating sugar. And also not snacking so much, cos let's face it, sugar = moreish snacks.  I'm a bit stunned because I've barely been moving inside the house and haven't been a metre beyond the front & back door more than twice since Christmas Day jaunts to the parentals for lunch and then the vet, and I've not changed anything else, though I'm probably eating more fruit and honey than usual.

So if anyone is in doubt - yes you can lose weight without moving much at all! (unless having 'restless legs' counts. I do wriggle a lot!)
In the pan, at night, in poor light. It's actually quite yellow and looks nicer in real life!

Saturday, 30 January 2016

Independent Living - First Steps in Stopping Your House Eating Your Energy - Deciding

The thing I've found hardest about the 'idea' of getting rid of stuff (ignoring the most obvious not actually having the energy to do it) has been being comfortable with the decision of 'Keep or Get Rid'.

What if I make a mistake? What if I need it after all? What if I'm effectively throwing money away? What if other people are upset that I don't own this particular thing any more? What if, what if, what if... Such a paralysing mental spiral of doubt.

It's something that's crept up on me over the years, a slow inexorable tide of indecision that's culminated in stuff coming into the house, and only obvious rubbish and recycling leaving the house. Net result? More coming in than going out.

Carrot and Corn Bake - time (30mins) skill (medium) eating (medium)

Ages since I've done a recipe. But to be honest, I've had the carers cycling through old favourites that are already on here or forgotten to take photos. There've also been some hideous disasters - unripe mango with crab salad (with fish sauce) *shudder* and a rather odd 'yoghurt' made out of crushed cashew nuts that I sort of got used to by the end and may try again just out of sheer pigheadedness....

Anyway. I fancied something different, so I had a look at the 'little used' cookery books I own. I have one by Erica White called Beat Candida Cookbook.  Candida is a 'fungus' that EW and others believe 'overgrows' in your body and causes illness. I have no idea if that's scientifically proven, but I do know her recipes (a) work and (b) taste good.  The yoghurt, shredded coconut and vanilla essence recipe already on here is one of hers.

So, the bake. Quite simple, as my carer said - 'it's making a bechemel sauce with onion then adding the rest' but there's quite a lot of vegetable prep required which takes time. He managed it quite comfortably in the 45mins allotted BUT it needs a long cooking time so you need someone to get it out of the oven for you if you can't do it for yourself!  I think it would be nice in little individual pots which are easier to handle for us meeps... But he used a single dish.

What is it?  An oven bake made from onion, carrot, sweetcorn, celery, eggs and a bit of milk, flour and fat.

Time required? If, like me, your carrots need peeling and hand grating, and onion needs chopping, then allow 45mins, otherwise if you have grated carrot and chopped onion ready done from the supermarket, probably 20-25mins preparation time.

Cooking Skill required? Need to be able to prepare the vegetables, and make a smooth sauce from the fat and milk. So I'd say medium skill level.

Eating ability required? Depends on how fine the carrot is grated, but there's lots of sweetcorn so it's a bit chewy. So medium level.


 55g/ 2oz/ 1/2 cup chopped onion
55g/ 2oz/ 1/2 cup chopped celery
2 tbsp unhydrogenated margerine (or butter)
2tbsp wholemeal flour (or whatever flour you have)
230ml/ 8 fl oz/ 1 cup soya or rice milk (or actual cow's milk)
2 free range eggs, beaten
1 large can of sweetcorn (sugar free) or frozen equivalent
255g/ 9oz/ 1 1/2 cups grated or shredded carrot

  1. Preheat oven to 180 degrees C, or 350 degrees F or gas mark 4
  2. Prepare the chopped onion, celery and grated carrot
  3. Saute chopped onion and chopped celery in the margerine/ fat over a low heat until transparent
  4. Sir in the flour and mix well
  5. Add milk slowly, stirring constantly and cook until thick and smooth (the lowish heat makes the flour swell so this takes time and stirring)
  6. Remove from heat. Add beaten eggs
  7. Add sweetcorn and carrot, mixing well.
  8. Pour into a greased oven dish and bake for about 1 hour until a knife in the centre comes out clean.

  1. I didn't have any celery. So we were going to add celery seeds, but we couldn't find them. In the end we didn't add any herbs, just salt & pepper. I think it would give a nice balance with the celery. But needs must....
  2. Instead of celery? How about fennel, or mixed peppers or leftover boiled potato chunks? You could put pieces of bacon or ham in there too. Maybe cheese sprinkled on the top?
  3. Eat with a salad, or cold cuts of meat or maybe roast chicken or other braised meat?
  4. I ate mine with tomato and cucumber slices.
  5. Put tomato slices on the top for decoration when you bake it.
Can it be frozen? Don't see why not, the Bechemel Sauce element baked into the carrot so it's quite a 'dry' dish. I suppose it may go watery on defrosting but then I'd just add a bit of milk to get it to go back together again.