For those in pain to pass on to family and friends

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This topic contains 46 replies, has 28 voices, and was last updated by  J 6 months, 2 weeks ago.

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  • #13127

    Anonymous

    My American daughter-in-law, who understands my pain, sent me this some time ago – I have given copies to friends.
    It’s fairly long but it covers everything.

    “Please understand that being in pain doesn’t mean I am still not a human being. I have to spend most of my day with this pain and I probably don’t seem like much fun to be with, but I am still me within this body.
    Please understand the difference between being `happy` and `healthy`. When you have the flu you probably feel miserable with it, but I have been in this pain for years and I cannot be miserable all the time. In fact I work hard at NOT being miserable, so if you are talking to me and I sound happy, it means I am happy. That’s all. It doesn’t mean that I am not in a lot of pain or extremely tired or that I am getting better, or any of those things. Please don’t say “Oh you are sounding better”. I am not sounding better, I am sounding happy.
    Please understand that being able to walk for 10 minutes doesn’t necessarily mean I can walk for 20 minutes. And just because I managed to walk for 20 minutes today doesn’t mean I can walk the same today. It is just as confusing for me as it is for you.
    Please understand my pain is variable. It is quite possible that one day I am able to walk to the park and back whilst the next day I will have trouble getting to the kitchen. Please therefore don’t attack me when I am in pain one day and you say “But you did it before”. If you want me to do something then ask if I can. In a similar vein I may need to cancel an invitation at the last minute and if this happens, do not take it personally.
    Please understand that getting out and doing things does not make me feel better – it can often make things much worse. My pain can cause secondary depression (wouldn’t YOU get depressed if you were hurting all the time?), but it is not created by depression.
    Please understand that if I say I have to sit down/take these pills now, that I have to do it right now and it cannot be put off because I am out for the day or whatever.
    If you want to suggest a cure for me…….don’t. It is not because I don’t appreciate the thought and it is not because I don’t want to get well, it is because I have had almost every single one of my friends suggest something at one point or another. You can try them all then realise you are using up so much energy trying things that can even make you worse.
    In many ways I depend on others who are not in pain……sometimes I need help with the shopping, cooking or cleaning. I may need the help of the doctor or physiotherapist. I may need people at different levels, they are my link to the outside world, and as much as possible I need you to help me”.

    #13128

    Anonymous

    If anyone wants a copy please take it. I find it most helpful. Sometimes it is so difficult to find the right words to express how you feel and actually having it written on paper for others to read and understand it, is far better than struggling with words.

    I know it has helped a few people – but I cringe when I read it because I made a typographical error – it should have read

    “Just because I managed to walk for 20 minutes YESTERDAY does not mean I can walk the same again today”

    I think most people reading it though will recognise it as an error and understand what I should have typed.

    Even though my daughter in law sent it to me, and I am almost word perfect with it, I still find it difficult from time to time to get friends and family to understand how things can vary from day to day.

    Many blessings and I hope those who have been in pain, have a better day today.

    Sheila.
    Sheila

    #13129

    Anonymous

    Sheila

    Thanks for this it’s a good idea. The thing that hurts me most is friends/family/work colleagues just thinking I’m better because I appear to be better. They don’t see me when I’m crying on my own cos I’m so fed up. I can’t let people see me upset as it just proves their theoy that it’s all in my head or down to depression/anxiety/tension. Sometimes I feel like I want to hit them! I won’t though as it’s not in my nature.

    I’ve been down all the psychological routes and even the psychiatrist has finally admitted that I should see a pain specialist not a shrink!!

    I will need to amend this a bit as my pain is in head and face, ears and neck but I don’t know if I actually dare give it to anyone!!

    #13130

    Anonymous

    I like that very much.

    I tell people that just because I didn’t need help today that I won’t appreciate it in the future.

    They assume that because on a good day I manage that it is now “permanent” oh but you were so well the other day……..grrr.

    #13131

    Anonymous

    thanks Jan and lots of thanks to Sheila and her daughter in law. I was in tears the first time I read this as it was everything I wanted to express but couldn’t as I thought I was off my head with the way my pain varied at times. take care all

    #13132

    Anonymous

    For Gillian –
    I hope you don’t mind me bringing this to the top again but it seems appropriate for Gillian to read it. I don’t know whether it will help you Gillian because you seem to have expressed your feelings very well indeed.
    I am sure we all know how you feel and although it doesn’t help us very much, it just shows there are a lot of people out there with an `attitude`.

    Sheila.

    #13133

    annie
    Participant

    hi sheila, never mind the spelling mistakes! it’s the message that counts. and it is such a true explanation of how most of us feel, isn’t it? take care! annie uk

    #13134

    Anonymous

    Thank you Annie – I hope you are beginning to feel much brighter because I know you have not been well at all lately.

    Best wishes – Sheila.

    #13135

    Anonymous

    Dear All,
    Sorry if I am “teaching my grandmother to suck eggs” !! Just thought I’d tell you how to print out the wise words at the top of this discussion forum topic.
    Highlight the bit you want to keep. Click on “Edit” at the very top of the screen, then click “paste”. Then minimise the screen. Go back to the “Word” icon and click on it, open a new page, then click on Edit again, then click on “paste” and – voila you have the wise words in a word document. You can then (as I did), change the type size to 16 and click Ctrl and P together ( to print ) and, hopefully you will then have the wise words printed in large print on paper. THEN YOU CAN THRUST IT UNDER THE NOSE OF THOSE INSENSITIVE IDIOTS WHO JUST DON’T GET IT – LOL.
    Or, blu-tack it to your fridge door to remind any family members exactly how you are feeling.
    Much love
    Josette

    #13136

    Anonymous

    Thanks Josette,

    i think we all need a reminder for this subject…..I certainly do now as have been living on eggshells for a while now.

    Amanda

    #13137

    Anonymous

    Thanks for posting this again. I have been trying in vain to explain to my sister why I can’t look after my mum for two weeks even though I’ve done it before. Each time I’ve done it I’ve needed at least a week’s bed rest, and it’s been harder each time. I feel so guilty. This has helped.
    Maureen

    #13138

    Anonymous

    hi sheila only just read your letter and found it explained how most of us in constant pain feels. I will pass this letter on to my family and friends it will save me trying to explain why i cant always do what they want me to take care
    jannie

    #13139

    Anonymous

    I have just printed this off for my husband he is walking on egg shells for the last few days perhaps this will help him understand how i feel! I swear if he says Im just feeling sorry for myself again I will throttle him!

    #13140

    ann in yorks
    Participant

    Hi, it’s my first time on the pain support forum and the first thing I find on the discussion board is Sheila’s message to pass onto friends and family, and I cry. For 3 years I have been trying to say these words and failed. Thank you Sheila. I am here at 2.40 am as I am in pain following a Lumber facet joint procedure and cannot sleep. After finding this website I feel I am no longer alone in my agony, I shall look forward to signing in regularly for a little boost just knowing other people understand.

    #13141

    Pink Poppy
    Participant

    Thanks Shelia, this is a marvelous thing you have written, just what I need. So thank you very much. xx

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