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.

Viewing 15 posts - 16 through 30 (of 47 total)
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  • #13142

    david
    Participant

    Hi all
    Thanks to Jan to Sheila and her daughter in law and thanks to all of you out there.
    I have only just joined i have posted a few topics but reading this topic brought tears to my eyes the reason, well in 1993 my wife was diagnosed with ME. It was unheard of back then, even I failed to understand how she must have felt, the pain she was going through, the family rejection, the blank stares ie you look alright, so what did I do, well I tried to understand but I too thought it couldn’t be as bad as she was telling me, so I pushed her too and guess what I failed. Anyway who could have imagined it, after a bad fall,certain immune problems, bowel problems, skin rashes, and massive all over body pain, and 2yrs later I was diagnosed with Fibromyalgia and other problems, so what do I think happened well I dont know maybe someone out there can tell me anyway I want to thank Jan for bringing us all together and I want to thank my wife for being supportive now that I am ill.

    #13143

    Charlotte
    Participant

    Sheila,

    Thank you so much for sharing this with us. I also cried when I first read it but it sums up all our situations and exactly what people think – ie you did it yesterday, you managed it last month, you will be okay. It is true pain is something that others cannot seem to understand and do not realise what we have all to go through just to get through our days.

    Please take care

    Charlotte

    #13144

    Sylvia4648
    Participant

    Thank you for sharing. I wish I had that about ten years ago. I’ve lost many friends because they got fed up w/ cancelations, restrictions on what I can do, etc. But most of all, my most loyal friend and I spent 5 YEARS arguing because she kept telling me that swimming helped her and would help me. We do not have the same prob, and I can’t go swimming for many reasons. Finally I sent her a letter w/ some of the info in your letter. I added that when people make suggestions, I appreciate them and weigh their value, but when the ‘suggestiion’ goes on for 5 years it sounds more like an ORDER, and I DO NOT appreciate it. Another thing that I no longer allow to ‘get’ to me are strangers who see my very unusual cane and ask why I need it. Depending on circumstances I may or may not give an abbreviated response; I have a laundry list of probs longer than my arm – which needed to BE 6 inches longer for a shirt I ordered. LOL But these perfect strangers almost always have ‘suggestions’. I’ve begun to say, again, based on cirsumstances, that by making that comment based on a sentence, I feel as if s/he thinks my mind went w/ my body because if the solution is that easy, I, and my medical ‘team’ have to have IQ probs to have missed this throw-away easy answer. My friend still makes sugestions, but only once. So my letter worked! Thanks again for sharing yours. If I can find it, I will share mine.

    Sylvia

    #13145

    Wendy
    Participant

    Thank you!
    It also bought a tear to my eye to read that, it’s such a relief to know that other people understand what I am going through. My husband is wonderful and supportive, but he admits that he really can’t imagine what I suffer with so I know that other people find it difficult to understand when they don’t even see me at my worst (I’m very good at hiding how much pain I’m in, not always sure that this is a good thing but I do it anyway!).
    I get such stares from people walking down the street when I use my crutches but am wearing high heel shoes, I often want to ask them if they’d like a photo!

    #13146

    dude
    Participant

    hi i have just read the article on sharing pain with family and freinds and it has made me feel so humble, i am feeling that i have one big extended warm family on this site wich is such a positive thought to carry around. i had some facet joint injections done last week wich at this moment i am starting to regret as they seem to have made the the pain a lot worse but knowing that everyone tries to uplift each other on this site i am really going to be more positive about life. love to all dude x

    #13147

    Sal
    Participant

    Hi, am a bit down at the moment, found your message and I am crying now.

    My husband has had an on and off back problem. Today we have now discovered that he has two prolapsed discs, and three other discs have completely worn away and if this is not enough he also has a possible tumour…and all this time I never ever appreciated how much pain he has been in..never understood how he can manage one day but not the next…I feel so guilty and alone in my guilt..how can I apologise for moaning at him for not pulling his weight when I needed him to.

    But most of all how can I get him to talk to me about it all, everything seems so bleak.

    #13148

    Jacqueline
    Participant

    What a lovely thing to share. Many thanks for that.

    I feel really angry and upset when people keep telling me to do certain things that might help. I mean I have tried evreything. one friend pushed me too far constantly telling me what I should do to get better and reminding me that i look well.

    I think we are all very aware of our own limitations and others howveer good their intentions may be should try not to give advice that is just not going to help

    #13149

    Anonymous

    Thank you for bringing this to the top, it is the first time I have seen it. Like others I have difficulty finding the right words to make family and friends understand. This say’s it all and can easely be given out.

    Many thanks Tony

    #13150

    Marjorie
    Participant

    Hello, Everyone, I thought this explanation was so good.Because of my back problems I have good days and bad days and i find it really irritating that friends and acquaintences will say how well I look when I am feeling far from well. Somedays I can walk quite long distances with very little pain and other days i have to sit and rest several times. I try to be cheerful and not moan about it and endeavour to make the most of the good days. Fortunately at present the good days are quite frequent. I find reading about other people on this website really helps to inspire me and gives me hope.
    Marjorie, Australia

    #13151

    Anonymous

    The spoons one is also another great one that is worth reminding people of. I find it easier sometimes to describe my pain and more specifically, how much ability I have in “spoons”. For example, yesterday I tried so hard to make a casserole for the family, as I have been feeling so awful that we live on freezer meals, but within an hour I was in agony and my husband came up to me and said “so thats all your spoons gone for the day then?” He was right!!! had a terrible flare the rest of the day 🙁

    Here’s the link:

    http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

    #13152

    Anonymous

    Simply Beautiful!

    Fiona

    #13153

    Anonymous

    Hi, thanks for sharing that with us.
    It’s getting me down a lot, and sometimes frustrated and angry, that I do my very very best not to be miserable and do my best to smile and see positives in things. I’m in so much pain, everything is a struggle, the most basic of tasks. But still I try and always smile. Most of my family and friends don’t see what goes on behind my smile, all the hospita appointments, horrible invasive procedures, the pain, struggles, emotions etc.
    And when they have a cold, (with no other health problems) all they do is moan to me saying how bad they are and how much feel like they are dying. A family member had some kind of virus for 2 weeks (they don’t have no other health problems) and they kept saying to me that they are fed up of being ill. Yes they may well be, what about me and others who suffer so badly on a daily basis for years and years.
    There are so many examples. Another example is, they have to have a blood test, and they are telling every single person and strangers, showing everyoneca tiny bruise on their arm, how much it’s killing and that they can’t open a bottle of pop, making a huge deal for weeks, and even reminded 12 months later. I have mine done regular, as so difficult normally need get from neck or groin. They don’t even consider what I go through.
    Oh and another thing, this is true, this one family member called an ambulance because they were sick once! I’m deeply shocked and appauled!

    #13154

    Anonymous

    Other example; telling people they have broke a bone, when clearly the doctor told them no, and then they were playing football on it after leaving hospital. Shocking!
    There are so many examples, too many to list, but you get the general thing.

    What upsets me is, they never ask how I am. I don’t tell them every single detail of what’s going on because there is so so much there is just not enough time, plus I don’t wanna moan to them about so many problems.

    Sorry for the rant! Just wanted to share my stories how my family/friends don’t understand.
    They don’t seem to understand that just coz I’m forcing myself to smile and be positive, that I’m suffering so badly all the time.
    Even in hospital when I’ve been seriously ill I still try and make a smile.

    #13155

    elizabeth crossan
    Participant

    Great to see this marvelous ” LETTER TO NORMALS” the author is beck oberin and i remeber reading this last year..I passed it too my doctor to read as many medically qualified admit to not understanding chronic pain..
    I also asked him if he would print it and stick it inside the surgery waiting room for all to read but alas its not happened..
    These are very wise words and brings a comfort to us all who suffer chronic pain..Thanks again for posting it..

    #13156

    insanecatlady
    Participant

    Its so wonderful to find this here, as ive had a copy of this for a few yrs now (also given to me by an American friend) and i have posted it on my deviant art page as well as several of my other social net work pages. I personally think all doctors should be made to read this.
    Although on occasion this has brought me to tears i think it explains chronic pain very well and all that get diagnosed should be given a copy to show friends and family to help them understand what the patient is going through. Thank you for posting it here as it makes it feel like home

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