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

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18 Responses to “Measuring By Your Own Experience”


  1. 1 Shelli August 12, 2010 at 4:58 pm

    I always appreciate others who share their experiences with CFS/ME, because I learn. Sometimes I’m different, sometimes I’m not. Either way, it makes me hopeful that there are so many ways to learn to live with the disease, in spite of the disease, because of the disease.

    I know that it is so much more possible to go down than up. It scares me, because the next step down is bed ridden, and I can’t go there. So I pace and panic every time I overdo it even a little.

    So what do you do with the hurt and anger? Same thing you do with the disease. You live it, you accept it, you adapt. You let go.

    • 2 rachelcreative August 12, 2010 at 6:38 pm

      Good advice Shelli. Thanks.

    • 3 rachelcreative August 12, 2010 at 6:48 pm

      Oh and I know what you mean about the next step down. Whatever that step no-one wants to really go there. I know I am not a totally fragile flower but I also think a lot of folks don’t realise how little (relatively) it would take to set me back to that next step down. I’m fortunate to have a lot of very understanding, sensible people around me and a husband who provides me a world where I don’t have to risk everything.

    • 4 salomekinsley September 5, 2010 at 1:32 am

      re: others judging us based on their own experience. i’ve had a lot of unsolicited feedback from others. and like the plumber whose wife had cfids- he extrapolated to your condition. doesn’t necessarily apply, of course. i’ve had people over the years conclude i must be clinically depressed, a hypochondriac, have emotional disturbance- and if i’d just think happy thoughts i’d be ok. they say things based on what they think they know. hard not to react. they speak out of ignorance because they, like so many, don’t really know what cfids is. shoot- I DONT KNOW what cfids is and i’ve been observing and living it up close and personal for over 10 years now. they just have to come up with some sort of explanation. it must ease a need to have answers for everything. i don’t know.

      it just goes on and on like this. i’m much more solid now and can manage my own take on what’s going on; not base it on what others say/think about me. i’m probably just as judgmental at times about other things– i try not to be, though. i KNOW i’m not what these people have said about my condition.

      i think lots of information will be coming down the pike to help us all understand me/cfids. salomek

  2. 5 Zarla August 12, 2010 at 5:05 pm

    Yes, yes, yes! You are so right about how we see and understand things. I have just given up trying to tell people what it’s like to have this condition.

    If they have any past experience to hang it on, they probably didn’t need the explaination in the first place!

    Most people are incredibly well meaning and try to understand, but we just don’t talk the same language over this one. I think I would have been an M.E.-groupie’s nightmare if you’d tried to explain it all to me 15years ago!

    I hope you can put the plumber’s comments out of your mind, Lets face it, he knows about U-bends and fawcetts, not M.E.! (I think that’s the case for most ‘M.E.experts’ too!)
    Z

    • 6 rachelcreative August 12, 2010 at 6:42 pm

      My willingness to accept I don’t know everything, wanting to learn, showing interest and curiosity, thinking from other perspectives, being open to listening … this is what people are seeing when they say I have good empathy I guess.

      But even then I could never know what this illness is like until I got a taste. And I admit I wasn’t too great at empathising with illness at all. We grow and we learn.

      Talking about this and blogging about it has helped a lot. It’s made me remember that this particular plumber definately is always right about everything. So I don’t need to take it personally.

      I’d just rather not be around for more pearls of wisdom when he comes back to do the work!

      But yes he’s a good plumber 🙂

  3. 7 Leanne August 12, 2010 at 6:14 pm

    I must admit I grab every story from everyone who shares they have beaten M.E Gives one hope.

    The weird thing about ME is no one person is the same – there seems to be differing levels of it between each person & for each person often each day. month. year.

    I have not got M.E. I am only watching our dd teen go through it – I live with it daily but have no idea really how it feels to be soo sick day in & day out.

    Love Leanne

    • 8 rachelcreative August 12, 2010 at 6:45 pm

      It’s great to see hope. Long may that continue! Thanks for commenting. ME is a weird one alright. That’s one of the reasons it’s so hard for a lot of people to comprehend. Plus brain foggy people aren’t always the best at trying to get across the complexity!

  4. 9 Cusp August 12, 2010 at 7:21 pm

    What a brave and interesting post. You’re very forgiving aren’t you ? :O) In my earlier days it would have taken me a good 2 or 3 days before I could have taken that step back and come to a calmer understanding of such a conversation. But, in the end, you’re right that people like the plumber are well-meaning and that he, like all of us, can only comment on things based on our own experience and understanding.

    Actually I do kind of get some of his desciption of his wife’s experience of M.E….if that is what she has/had because, for many years I was kind of like that: having periods of being terribly unwell, bedbound for a week, then two weeks, month, several months and then, somehow, being able to drag myself back to some kind of life and pick up the threads and put on the mask and cover up. I did it at College: waited years to go to Art School and I was damned if my sudden illness in the second year would put a stop to it all. Spent 2/3 months mostly in bed and then somehow managed to get back — changed the diet, paced (though I didn’t know that was what I was doing), avoided more chemicals, more foods etc etc., skipped lectures, had days off (and slept all day and all night), sat and wrote all my assignments, my thesis in bed…so I could nod off every hour or so before I awoke to go back to it. Nobody knew….it was all covered up. It’s amazing how you can hide something ..even this illness if you have just a little chink of energy that you can just about work round.

    Of course in the end, since no-one diagnosed me, since no-one advised me, since everyone put everything down to being neurotic (have some anti-depressants), vegetarian (eat more protein), over working (‘get an early night’ and don’t look so worried ), I believed them and carried on….until I fell slap bang on my face and couldn’t get up…literally and metaphorically.

    What people like the plumber don’t understand is how PWME live in a strange canyon where they hear voices from above on all sides shouting…’Do this, do that, you’re this, you’re that, go here, go there….’ until we get sick of hearing the ‘advice’ and don’t know where to turn because little of the advice rings true or makes sense to us…the people who are experiencing this condition, who live with its ups and downs every day. In the end we don’t want to hear the voices, the advice so we don’t listen anymore or we smile politely…and don’t listen anymore because in the end it’s only us, the PWME, who can understand how to live with such a contentious and mercurial, misunderstood and baffling condition.

    • 10 rachelcreative August 13, 2010 at 10:29 am

      Oh great comment Cusp thank you. I suppose looking back the 18 months leading up to the crash I’ve never recovered from was a bit like that pattern of ok followed by knocked off my feet for a week or two. And there was a lot of time before that where I can’t quite know if I was unfit or grappling with mild ME.

      And if I hadn’t had a diagnosis from my Lovely GP after that 18 months of struggling on I probably would have struggled on too with trying to go back to work, booming and busting from pacing beyond my capabilities.

      I’ve had a few people now come to me after they’ve had sudden illness which has left them housebound or knocked off their feet for a week, suddenly understanding what life must be like day in day out. They have a tiny insight into being proper poorly and realise how many simple things are taken for granted. And I’ve been lucky they’ve understood that one week of feeling wretched doesn;t make them an expert – just that things click into place and they think “oh my”.

  5. 11 Jo August 13, 2010 at 3:31 pm

    This post and subsequent conversation has brought up an awful lot for me too. I’m afraid I’m too pooped to comment much. Sounds like he really got to you and it might be worth exploring why. Is he echoing the voice of your own inner critic for example? I dunno. Anyway, I’m sorry your baseline took a tumble and seems stuck on ‘low’. It’s the ‘chronic’ bit that’s difficult. Here’s hoping you see some improvement soon so you can get on with some art.

    • 12 rachelcreative August 13, 2010 at 6:08 pm

      Thanks Jo. I do wonder why I’m not robust enough to not be effected by such exchanges. It’s not a simple answer and it’s complicated by ME doing odd things to my brain and emotions, coupled with the grind of the chronically not getting better. Stuff to think about – if I can ever unpick it.

      Thanks for taking the time to comment when you’re too pooped to really.

  6. 13 ashysheela August 16, 2010 at 10:28 am

    It is so hard when we get a reduction in function-level not to look for what we have done wrong, but it is rarely anything that straightforward; you are not failing to get well, you are succeeding in living with a fluctuating chronic illness, and it is really hard. It is natural to get depressed when a down-turn happens, and when you are down and someone comes into your HOME and tells you ridiculous stories (like you cannot get any worse and ignoring the complexities of mood in living with such an illness with the patronising “think positive”) is such an INVASION and hard to fight off internally when you are already fighting so much else.

    Don’t beat yourself up about it getting to you, it has happened to me several times and i am sure to many others. I find it hard to shake off the sense of just wanting the person to take themselves and their well-meaning insults out of my house; hard when they are set to stay to do some work for some hours or days… grr.

    Examples i have had: “your life sounds pretty much like everyone’s perfect life”.
    “that must be nice (laughing)”
    “wish i could get up so late every day”
    “you should go to the spiritualist church, they healed my back yesterday, they can help all sorts of things”

    • 14 rachelcreative August 23, 2010 at 8:52 am

      I just read this comment (I am lagging behind!) and it’s great. Thanks Ashy. I hadn’t thought about it like that and it’s really useful.

      I am lucky I don’t get exposed to this sort of stuff often because I don’t have a lot of contact with people in the real world outside of the small circle of friends and family I know and trust. And I’ve been lucky not to get bombarded online either.

      I did get someone online who I’ve never spoken to before telling me to please do EFT (groan) so I said some rude words and blocked them. Maybe that’s what I need for my home – a big sign saying “SHUSH – now go away”.

      • 15 ashysheela August 23, 2010 at 9:41 am

        oh good. I am lagging behind too – today is the day i try to catch up on a few things! I like your “shush” sign idea – but i am not sure it would stop people giving their tuppence worth anyhow… it’s irresisible it seems!

  7. 16 Zarla August 16, 2010 at 11:15 am

    Wow! What great comments and conversation Rachel!

    We all get so much from reading others experiences and outlooks to this illness. I know that’s why I started blogging too, my friend suggested it and I thought I could lose nothing.

    But in actual fact, I had everything to gain from getting out and about in the cyber world of ME/CFS blogs. I understand myself and my illnes so much better.

    I get so much from reading, I feel a little less alone today, and a lot less frustrated and emotional. Thank you ALL OF YOU!

    Zarla
    xxx

    • 17 rachelcreative August 23, 2010 at 8:53 am

      Oh I am glad 🙂 It can be such an isolating illness and I think this kind of online contact has made such a huge difference to how I manage to cope.

      So yes THANK YOU ALL OF YOU from me too!

  8. 18 Suzanne September 17, 2010 at 12:06 am

    I found your blog when I was looking for some moral support for my own trials with CFS. I wasn’t going to post a comment as you have lots of online support already. Your post played on my mind though and I feel I need to say something.

    First, I identify with your problems with the plumber’s attitude – I’ve been through very similar stuff myself – some of it from my brother and sister which was very hard to cope with. My advice – ignore it – ignorant people say the most ignorant and damaging things. One thing about having CFS is that it teaches compassion – if we feel this bad and get treated with this much intolerance and misunderstanding what must it be like to have a disability that impairs physical function but leaves the mind intact etc.

    The other thing I wanted to talk about was your decision not to seek help from medical people. I’m in Australia and because of the way my disability payment is organised I am required to see a CBT woman once a month. I resented this for ages but am coming to see she has her good points. Helping me understand the connection with CFS and the limbic brain was breakthorough in my understanding of the condition.

    Also the exercise problem – like you I can’t function all that well sometimes but I am not as sick as you. I am only bed bound occassionally and can get out of the house. One thing I have learnt the hard way is that if I do no exercise at all I get worse. I can’t walk round the block every day as the CBT people tell me I should but I do find a little walking every day does make me feel better. The trick is to start small and build up. Pacing is really important. Stop walking as soon as you feel bad and have a long rest after any exercise.

    Another thing to try is using vitamins,herbs and minerals to build up your depleted body. Vitamin B does wonders for the nervous system and helps when dealing with awful plumbers and the like. There are lots of natural remedies that help a great deal – if you are in Britain a lot of people have great response to treatment from Dr. Sarah Myhill. If not – do web searches – ask in Health Food Shops and maybe visit a Naturopath if you can find one you trust.

    Drinking lots of water also helps flush out toxins.

    Good luck – I hope you find some relief soon.
    All the best – Suzanne


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