Archive for August, 2010

Measuring By Your Own Experience

I remember learning that most people tend to react to situations by measuring them from their own experience.  That is, you apply what you’ve experienced yourself to the matter in hand.

I have tried really hard from that day forward to not limit my understanding to my own experiences and I am the richer for it.  But it’s terribly difficult not to do it because often we can only call on what we know to make sense of things. Often we want to be able to help, to offer kind words and it’s easiest to do that from what we already know.

It’s much easier to say what some of the little that you know than to say ‘I don’t know about this but I’ll come on the journey with you’.  Much easier than to admit to ourselves that we don’t know all that much in the grand scheme of things.

Especially so because often our contact with people and situations is casual, or we aren’t able to invest that much in it so and we don’t want to have a silence  – so we fill it with advice or the knowledge we have ourselves.

What this post is really about is the plumber.  A very nice, very talkative man.

He came to give us a quote on some little but urgent jobs and on his way out was asking what we did.  He vaguely remembered from last time (wrongly) that I was a student.  So I was brave and said no I was sick and didn’t work.  Was I signed off?  No I’d not worked for 4 years from being sick – I have M.E.  “Oh never!” says the plumber, “My wife had that”.

My heart always sinks when people say “had that” in the past tense.  The first was a hairdresser who said they had it for a couple of months.  Groan.  It usually indicates people who’ve had an illness that doesn’t seem to sound much like what I have wrong with me.

To be fair to the plumber he was really, super nice about it all.  Told me his wife had it when she was a teenager back when people laughed at you for having it.  Told me she had to take time out and go back to do her education over a series of years.  Told me they have 2 young children and she’s a lot better now.  Told me she still gets tired and gets monster migraines from the M.E.  Told me he’d pass on that I have it and that I can call her anytime to chat about it if I want to talk to someone who knows all about it.

He also told me I’ll get better.  In fact he told me I can’t get any worse – I can only get better.  “Honestly”, he said.

“Ummm.  Yer … but … I have actually just relasped a bit …”

“Ah” he says “do you get it where you’re fine for a bit and then you’re in bed for a week?” he nods to encourage my yes.

Actually this is the kind of ME that mystifies me.  This periods of ok, periods of very ill is an alien concept to me.  I expected in the early days that this is what my illness would like if it persisted.  Maybe I’d get a lot better and then crash for a week, pick myself up and get back to it.

When that patch of “ok” didn’t come I thought perhaps I was just on a wider arc than most. Perhaps I was in a crash for a year and soon I’d be ok for a year, then maybe crash a bit and get better – but on a longer timescale.

Nope.  I’ve been “on a consistent level of crap” (as I said to the plumber) for nearly 3 years.  I improved very, very slightly over that time it’s true – but nothing to write to the DLA people about.  Not enough to go to the corner shop on my own, let alone get a job or have much of a normal life.

So the plumber telling me I can only get better, I can’t get worse has made me pretty upset.  With myself.  For not being successful at recovering, for not ‘only getting better’.  For failing.

Him telling me the key was a positive outlook didn’t exactly cheer me either.  I know I’m a bit sad and down at the moment but I do have a pretty positive outlook generally and indeed even at the moment despite being utterly fed up in the face of a set back with my illness.  All these years I have focused on the can do not the can’t.  I’ve laughed nearly every day.  I sought out joy.

My rational, logical brain knows this conversation is nothing to get upset over.  I know for a fact that I can get worse and get worse very easily just by pushing beyond my physical limits. 

Maybe his words of wisdom took that knowledge as a given or maybe his wife’s experience of ME is different to mine.  But I know, from my own experience, that I can be more ill than I am.  I also know that a positive outlook is very important because it’s a lot easier to be this ill with a positive attitude than with a negative one – mainly because I’d probably do myself in if I had a negative attitude.

I also note that he was insistent that something (relevant to UK tenancies) was law when I know it is not.  I told him I thought he was wrong and he said no, definately it’s the law.  So I double checked a couple of sources and I’m right.  So let’s just say as well as being nice and talkative he’s also pretty sure he’s right about everything.

Plus the plumber was only reacting to my revealing I have M.E. from his own experience, as most of us do.  He measured my illness, my life, my ability to recover – from what he’s been through with his wife.  And in turn I measure this myself largely by my own experience – although there are large doses of others experiences mixed in here too.

He told me I want to get to see some proper experts.  Sigh. I wonder still who those might be.  A referral to a specialist will get me CBT and GET and maybe pacing and lifestyle management classes.  I continue to resist these because I’ve kind of been through all of that in the first year or two on my own and I’m certain they will be counter productive.  Which in itself makes me question myself yet again. I resist the professional NHS help because I want to keep myself ill?  But I know I resist it because I don’t trust those delivering the therapy to keep me well or to not risk the little ability and function I do have.

The plumber was being kind.  He was being encouraging.  It’s just that it didn’t quite have that effect on me because my experience and knowledge are different.  Can I be angry with him for that?  Actually I’m upset (or is it angry?) for the unsolicited advice and pep talk. 

But also I remind myself that without people sharing I wouldn’t have access to the tools that have helped me with ME – that includes loose pacing, D-Ribose and LDN.   So what do I do with the hurt and the upset and the anger?

I guess I can blame the ME for making my reactions, my emotions a bit too senstive and unchecked due to this flare.  And remind myself when I am in the plumbers shoes to try and not just measure it by my own experience but to try and look outside of what I know (because I always learn and it always helps).

Not forgetting that sometimes listening and saying “I don’t know what to say” is very valuable too.

Image by knickertwists


Making My Own Tummy Remedy #2

I’ve been successful with making my own tummy remedy.

I’ve been using:

  • 1mg Sodium Bicarbonate
  • 0.8mg Potassium Bicarbonate
  • 0.5mg Citric Acid

I started with less citric acid (0.2mg) which was enough to help disolve the other ingredients with effervesence but left a lot to be desired in the taste department.  More citric acid makes it taste a lot better and sort of refreshing.

The tub of Sodium Bicarbonate I bought is packaged for medicinal use which is handy as the directions suggest (for adults and children over 12) “Take 1g to 5g in water every 4 to 6 hours (a level teaspoon holds about 5g)”

Of course this is not for those on a low sodium diet and it also has warnings for “heart, kidney or liver problems, are taking other medicines, or are pregnant. May cause abdominal cramps and flatulence“.

My homemade tummy remedy seems to be effective but I’m still not sure it’s as good as Resolve.  Which is odd because it’s the same but without the paracetamol.  Although it’s also missing 30mg of Ascorbic Acid Ph Eur, 153mg of Anhydrous Sodium Carbonate Ph Eur, plus colouring, saccharin, glucose and sucrose.

I’m pretty much persuaded to ditch Eno though for all but maybe travelling with as it’s basically Sodium Bicarbonate with some Citric Acid.  Plonking half a teaspoon of sodium bicarb in a glass of water is far cheaper than buying sachets.

I can remember laughing at an old movie where the guy is always asking for some bicarb for his stomach but it seems old wives tales are not always tales!

I have a 1ml measuring spoon in my drawer and confirm that is the same as 1mg of sodium bicarbonate.  Which is handy.

I’ll keep trying the home remedy as I think it’s pretty effective – but I will check out what those other missing active ingredients in Resolve do just in case.

Making My Own Tummy Remedy

I’ve been buying supplies today to make my own tummy medicine which I’m basing on Resolve but without the paracetamol.

Resolve is the most effective medicine I’ve found when I’ve got gassy, crampy discomfort from IBS and a sensitive stomach.  The problem with is it also contains a dose of paracetamol which often I don’t really need.  Or I’d rather take a co-codamol at another time in the day for something else.

I searched for an off the shelf solution – a stomach medicine that was similar without the pain killer.  I found Eno Salts which are similiar and do offer some relief.  But they’re not as good. Studying the ingredients I found that they don’t have Potassium Bircarbonate where Resolve does.

So the only way I was going to get what I needed was to make my own.

I realised that the Potassium Bicarb is indeed the missing element when I was searching for supplies and found this suppliment for soothing digestion. I’m also going to be adding some citric acid to make it fizz.

“Carbonates assist the small intestine in maintaining an alkaline pH. Carbonates may help improv…e tolerance to foods by improving digestive enzyme hydrolysis of proteins, fats and carbohydrates.”

I can buy Potassium Bicarbonate, Sodium Bicarbonate and Citric Acid (food grades) from ebay inexpensively.  (I could also add Vitamin C if I wanted like Resolve has but I don’t think I’ll need it.)  I’ve also bought some digital scales that measure tiny amounts (from 0.01g) and some small ziplock bags so I can make up ready doses for ease. 

I hope to find someway of measuring a single dose out so I can keep a large mix of it in a food container. The difficulty will be finding a spoon/scoop measure that happens to be the right volume for the weight I need for single dose.

I’ll share a recipe when and if I’ve mixed it successfully once I’ve gotten all my supplies.

It’s a little worrying to be ordering the scales, ziplock bags and citric acid used by shifty druggie types, not to mention the idea of potentially carrying little bags of white powder around (hmmmm) but I might only take Resolve and Enos sachets out in public to be safer.

The initial outlay is a little pricey but it works out around 15p a dose instead of 26p a dose for Resolve – plus of course I get what I need without the stuff I don’t.

I’m quite excited about it.  I hope it works!


Push It 11 Sep 2011

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