Any advice on how to help other people understand.

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  • #34662
    Wendy
    Participant

    Does anyone have any good advice on how to help non-sufferers understand what we are going through? I thought I’d have it OK as I am a nurse but my colleagues on the ward just don’t seem to get it. They think that having a sit down for 5 minutes will sort everything out (I have pain in both feet following nerve damage during orthopaedic surgery). Also no-one seems to understand my theory that as my feet will hurt whatever I do I might as well have pain and pretty shoes as the same amount of pain and ugly clumpy things (pretty shoes also have the added benefit of cheering me up!). I’ve tried explaining to the other nurses using pain scores (which we use with the children on the ward) but they can’t understand how I can carry on working with a daily pain score of at least 6-7 out of 10, increasing to 10 on bad days (I’m stubborn and I love my job, I refuse to let my crappy feet get the better of me!). How can I explain that even though the pain IS horrific (I often get the feeling they think I’m exaggerrating) I won’t let it stop me doing the things I want to do?

    #34663
    Anne
    Participant

    Hi Wendy

    There’s a great letter somewhere on the forum that explains to people exactly how you feel. Sorry I couldn’t find it but I know it’s there somewhere!
    If wearing pretty shoes doesn’t cause you more pain why are your collegues questioning your pain? It’s strange that people think that if you look ok then you must be ok. I’ve just returned from an evening out, we stayed the night after our meal. One friend commentated on how great I was looking and said she didn’t realise my back was better. I tried to explain that just because I looked OK didn’t mean I wasn’t in pain and perhaps she should call and see me today when I would be screaming in pain.
    The one thing you have to be careful about is making sure you pace yourself, I know when you’re working especially in your job you can’t choose when to be busy. I know I got through last night because I was excited and adrenalin was pumping, when we left the restaurant on the short walk to our room I was in agong and my husband had to undress me. If I did this on a daily basis my overall pain levels would increase.
    As far as pain scales are concerned everybody is different, I personally would consider that at level 10 I would be unable to get out of bed and walk. Perhaps some of your collegues are working to a different scale to you, try asking them to describe how much pain they think somebody is in at different levels of the scale.

    I’m sure somebidy will reprint the letter I mentioned
    Good Luck Anne x

    #34664
    carole Sheen
    Participant

    Hi Wendy,
    Scroll down to “For those in pain pass on to family and friends” 24/9/06. Hope this will help.
    That’s the trouble if peaple see you doing things and you look alright, they cannot seem to believe that you are in pain, it is not like we have a sticker on our forehead saying I am in pain.
    I admire you carrying on with your work. Good luck and best wishes. Carole.

    #34665
    Anonymous
    Inactive

    Hi Wendy
    I know what you mean about people not understanding.
    They think because you look “normal” you are fine,
    because you don’t go on about the pain you are in 24/7 you are fine,
    because you try to cheer yourself by putting make-up doing your hair ect then you are fine
    because you try to have a life then you are fine.

    People who don’t have to live with pain 24/7 have no idea what it is like.
    Pain is something we learn to live with and would anyone really want to talk to us if we told people how we REALLY feel all the time!

    Ask them what they would do if they had to live with pain 24/7…. would they just sit at home and feel sorry for themselves or would they try and live there life to the best that they can.

    Tell them that physical pain is hard to live with but the mental pain that can and so very often does go hand in hand with physical pain is just as bad if not worse and if you let your pain take over your life then you really would go mental!

    Good luck
    Red

    #34666
    Jan Sadler
    Keymaster

    Hi Wendy

    There is some information about pain scales on this website. To find it go to the main menu, then select help and advice, then select consultations.

    I have copied below the standard format for pain scales.

    0 No pain

    1 – 3 Mild Pain – aware only if thinking about it.

    4 – 5 Moderate Pain – can be ignored at times.

    6 – 7 Fairly Severe Pain – painful but can continue tasks.

    8 – 9 Very Severe Pain – concentration difficult, can only do undemanding tasks.

    10 The Worst I can Imagine – incapacitating pain, can do almost nothing.

    You might like to copy it and print it out, perhaps it would help you and your colleagues.

    Jan at painSupport

    #34667
    Amanda
    Participant

    Wendy

    Thank you for bringing up this topic. I have found that my outward appearances have seemed confusing to even the best of friends – who i have heard comment but shes still getting her hair done every now and then so it cant be that bad…!!!

    The very frustrating part is that if we dont give a toss about our appearances then we are classed as not caring and most likely depressed!!

    I have since this began taken a much larger interest in my appearances…not because Im vain but because I can do little else so may as well try to cheer myself up by at least looking better. Due to my condition I can no longer wear trousers/jeans etc….and have swapped baggy tracksuits for a more feminine look which is more comfy for me too.

    Its my decision to try to distract from my pain by choosing to wear something girly tomake me feel like a woman…and seeing as most of my days are spent lying down I think it s quite an achievement.

    Sorry Ive got weighlaid here….you make sure that you take as much or as little care about your looks for you and for noone else.

    Pretty shoes are the best thing to cheer any girl up…..Bless Jimmy Choo!!!

    Amanda

    #34668
    Wendy
    Participant

    As I am a nurse we use pain scales frequently on the ward, & every one of my colleagues has used the phrase “with 0=no pain & 10 being the worst pain you could imagine.” We have all had training on this & yet they still don’t get it when I describe my pain to them in this way. IT IS SO FRUSTRATING!

    I agree that we all have to do the little things that we can to cheer ourselves up & have also recently started on the make-up (also partly because I am getting so knackered from not sleeping because of my pain that I look terrible now without some slap on!). I only wish a nurses salary ran to Jimmy Choo’s (actually Manolo Blahniks are more what I covet!)

    As for the pacing I know it is one thing I am awful at. I know I am too stubborn & have a tendency to just keep going at something, knowing that my feet will make me pay for it later. It’s one of the things that I hope going to a pain management programme will help me with. But I also know that it is imposible to stop doing stuff at work just because my feet hurt. I can’t turn to a child & say “I’ve got to stop because my feet are sore” but I can’t stop going to work as I would get depressed sitting at home, especially if my feet were having a good day. I know it sounds really stupid but I have changed my shift pattern from 5 8hour shifts to 3 12.5hour shifts. I know it sounds crazy working longer days but it gives me better rest time. The longer days mean I get my rest breaks which I hardly ever got before.

    #34669
    stevefox442
    Participant

    hi,

    please try my poem, it might help

    Thanks

    Today is another day I have to deal with the pain
    To take my medication that makes me feel insane
    I have to live with this and it won’t go away
    So please don’t get angry if today’s a bad day
    The side effects of my tablets make me feel very low
    Most days I cant be as happy or always be on the go
    Please try to understand that I might look ok to you
    But trust me I’m in pain and I can’t do the things you do
    I know I can get depressed, feel down or have a moan
    But I’m still the same person that you have always known
    I just want to say sorry for the times I’ve snapped at you
    I know it’s difficult to understand just what I’m going through
    Don’t be upset if I don’t feel like it or can’t do it your way
    Tomorrow might be different as the pain varies day to day
    When the pain and medication makes me feel depressed
    Just remember I have to live with this so I’m doing my best.
    I have to drive 30 miles to work, which I find hard to do
    The tablets make me tired & can’t concentrate too
    It’s exhausting and difficult to make it through the day
    I wish I could give up work but I have many bills to pay

    #34670
    awilliams73
    Participant

    I AGREE PEOPLE SYMPATHISE IF U HAVE A VISIBLE BROKEN LEG FOR EXAMPLE,I WENT TO A DLA TRIBUNEL I AM 33 YEARS OLD AND EVEN IF I DO SAY SO MYSELF I LOOK 24 YEARS OLD AND AM PRETTY. THE TRIBUNEL TURNED DOWN MY APPEAL AND STATED QUOTE THE YOUNG WOMAN SAT IN FRONT OF US WAS A STARK CONTRAST TO THE PERSON WE INVISAGED FROM THE CLAIM PACK. ALSO I WAS FEELING ILL THAT DAY IN APIN AND WENT WITH NO MAKE UP GREASY HAIR AS WAS SO ILL AND FOOD STAINED CRINKLED CLOTHES AS WAS NOT RECIEVING HOME CARE AT THE TIME. I FEEL THAT COMMENT WAS DICRIMMINATION DOES ANYONE AGREE

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