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
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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.)

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...

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!

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.

CARROT AND CORN BAKE

Ingredients
 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

Preparation

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.

Alternatives

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.

Independent Living - First Steps in Stopping Your House Eating Your Energy - Quick Wins

When I look at the mountain of stuff it all seems insurmountable. And confusing. Where to start? Which bit to chip away at first? Will just a little bit make a difference? Then I feel overwhelmed, anxious that I'll just make more mess, anxious that I'll run out of energy. And then I stagger away for a rest and nothing happens.

Today I decided that the first step is the hardest. I have an outbox see HERE, I have a bin, and by tipping a load of ironing onto the table in the  junk room I have a recycling box too.

So what's stopping me? I need a Quick Win - something manageable in one go. And because my carer has gone for the day, something I can handle for myself.

If you are feeling the same, is there something near at hand like a drawer or a tray or a bag with stuff in? That you could tackle? To get your feet wet? Apartment Therapy's January Cure suggests just picking ONE drawer something that can be dealt with then & there HERE

This is how I've got on with my first Quick Win....

Independent Living - First Steps in stopping your house eating your energy - Letting Go

The elephant in the room. The big issue. The one that stops most of us actually getting rid of stuff whilst knowing that if we bring more stuff in (which doesn't stop us), eventually we won't be able to get in the house. There won't be space.

In a word, emotion.  Emotions, in various forms stop us getting rid of our stuff. And emotions, in various forms, make us get more stuff.

Independent Living - First Steps in stopping your house eating your energy - Choosing

Ok so. You have your list. Of one room, several rooms or all rooms. That's up to you.  It's probably rather large. Fearsomely large.  I look at mine and my heart sinks. I start wanting to give up right now because of the sheer volume of energy doing that list will need.

Fear not! This is a snail like process. Chopped up into little bits of manageable energy use.

The first step was THINKING which was the last blog post HERE.

Next, we CHOOSE. We choose 3 to 5 items per room from the entire list (one room, several or all rooms), and concentrate on those.

Independent Living - First Steps in stopping your house eating your energy - Thinking

A house is a big thing. Lots of square feet, lots of things filling the square feet. And depending on who lives in it, it gets used in different ways.

One of the first things I realised when I got this ill was, that the way a healthy person uses a house and the way an ill person (called Meeps from now on, short for people with ME, as in ME people = meeps) uses a house is completely different.

Healthy people can use all the space, they can rummage to get something out, use it, and put everything back without even noticing that's what they're doing. Meeps are so knackered by the initial rummage, or even getting to the cupboard, that nothing gets put back or even used. So Meeps end up with an astonishing amount of 'stuff' surrounding them that they use often enough to not want to have to stagger a few meters to a cupboard to locate (they might not even be able to get out of bed) but not so often that it's used all the time. Depending on how knackered energywise the Meep is, this minor chaos spreads outwards like ripples in a pond. Healthy people can say, spend a day tidying up, at the end of it they're tired, but hey, it's done. Meeps can't. So this 'decluttering' I'm doing will eat my elephant a bite at a time - Meeps have to be smart about finding ways to do things differently, cutting a task into chunks that can be tackled bit by bit.

Independent Living - My house eats my energy, time to change!

Morning.

When I got this ill (sofabound/ bedbound depending on whether I'm upstairs or downstairs) I suddenly realised how very very hard it can be to do simple things around the house - the distances between bed and toilet, reaching into the fridge for food, all the stuff that 'healthy' or 'relatively healthy' people take for granted.  Still more difficult is moving around and using your stuff if your house isn't, erm, how do I put this politely, tidy? Or, in my case, I'd probably be snapped up as a contestant for a TV 'this is how hoarding starts' show....

My basic problem is

• I have too much stuff for the space available (about 45 square metres ish. Can't quite remember, could be 48, anyway, tiny 2 bed house and a small shed), 
• I can no longer work and rely on state benefits so I'm anxious about getting rid of something I might need later but won't be able to afford to replace, and, anyway, this stuff reminds me of who I used to be which feels important now I can't be that 'doing' person. I feel invisible to myself sometimes never mind other people, and,
• No actual spare energy to do anything about it. My daily life of existing takes up my energy, so if I do something extra, something has to give, like getting dressed or washed or cleaning my teeth etc.