What difference does it make anyway??

I am getting a kick out of all the buffoons that think they know something about me or my situation to make these disparaging remarks and judgment (al) calls. Most are wonderful and supportive. Always going to be those that are less than. I don't have enough information to call anyone here an alcoholic or drug addict. Love the people in UK that think they know more about US healthcare system than I do. Really seems hurtful to call people who take opiates for pain drug addicts. We get enough of that and think we should be supportive of one another on this site. UK deals with people in pain and drug addicted far better than we do. Our system is so corrupted by the money that a lot of medical facilities put profits over people. Plus being crippled presents more issues than health care. I would think some of you would be more supportive of me willing to take one for the team.

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  • yes humanity is a gift of life in itself and next to bringing a baby into the world is one of the highest accolades' bestowed upon mankind,so if comment's that come attached with the hint of sarcasm or negative feedback disregard them,I would never intentionally offend anyone so all I ever have done in the past is to try and discuss illnesses,wether it be physical or mental health problems,and sometimes people on this forum have slightly better way with words,and I think we are all adult enough to know if we've crossed the boundary and I came across a rather vile name that was put into my inbox,so this has now disappeared now thankfully,but rest assured I will report it,and I don't know how on earth it even got through this forum,so I can assure you I was or never having a go at you thanks

  • I didn't put anything vile in anybody's inbox

  • no I can assure you it wasn't you,I wouldn't even use the title this disgusting person used,so I always found you a most pleasant person even with you health conditions to speak/txt to,so rest assured I can most definitely was not you,and yes I'm normally a good reader of personalities,but gods knows where this individual's head is it,thanks

  • Pretty sure I know who you mean. I read one of his responses and don't want to read anything else he writes. Yeah he deals in vile insults

  • I am so sorry to hear that someone used this forum as a platform for abuse. You sound compassionate and kind and do not deserve that. I hope you reported it.

  • You make a lot of fair points here Dale especially about the US health system. We do live in a bit of a NHS dream bubble as 90% of the time our treatment just happens , the medication is there without having to worry if the insurance will pay.

    As for remarks and comments you don't like .... there is no compulsion to respond or indeed take on board anything that is said. Life is too short and painful to get upset by things people you don't know say.

    But sometimes a remark may have hit home and does take a bit of pondering upon. It can be very easy to over react when it's given in this message format.

    Wishing you as good a day as possible

    Dee

  • Thanks Dee

  • You are angry I feel. I am one person from UK that does not call people acoholics. a person can only be called an alcoholic if they admit they are. If drinking alcohol is disrupting their normal way of life they have to admit and seek help only when they come to understand, I am a member of the al anon and was an public information officer for 5 years and I worked with recovering alcoholics. That was my title but there are no bosses in al anon or a a I wish you all the best

  • Hi there encountered many people who just don't get it. It took me a few years to disregard these disparaging comments. I now do this with ease.

    If you can master it im sure your life will be alot less stressfull. People just do not understand even family sometimes

    I think it's easy to take things said the wrong way if you are vulnerable mentally, which most with chronic pain are. It's very difficult to not respond to someone who comments without any knowledge, but I know treat them as such . I would never get into any chat about a subject I have no knowledge of.

    There are some who can't go through life without offering an opinion on chronic pain sufferers.

    A good way to deal with really insistent ones is to ask if they suffer from chronic pain . If they don't ask where they have gained what seems to be invaluable medical knowledge . After all they would not enter a discussion regards say the atom. Why because they have no knowledge. This might do the trick.

    If not I try ignoring them as is there opinion all that important in the grand scheme of things.

    Hope this helps

    Dave

  • How many members of staff at the pain clinics suffer chronic pain? Or the anesthetist who treat sufferers?

    Very very few yet they have an empathy towards their patients - something I have yet to find among many chronic pain sufferers on this thread.

    Maybe going back to basics and learning about chronic pain, how it affects your lives, those around you - pacing, managing pain and the ultimate goal...acceptance

    x

  • I have to respond to your post.

    While I agree there are many health workers who don't have chronic pain and do show empathy to many suffering with chronic pain, I don't really agree this is helpful on here.

    I have full body CRPS after an injury. So know as well as any about chronic pain.

    The thing with empathy is that if you suffer from chronic debilitating pain empathy does not come across as empathy , mainly because of the vulnerable mental state one finds yourself in . It may sometimes come across as patronising or that no one understands .

    I have been 20 years with this God forsaken condition I write about and read everything from patient profiles to medical reports.

    I also help with pain groups etc . Working with pain management etc etc.

    Chronic pain affects every single person differently medication for one does nothing for another. A treatment for one does nothing for another.

    The over riding thing is people with chronic debilitating pain will pursue all avenues and try anything to gain relief .

    Everyone is different physically and mentally

    I now live life totally free of any medication. Although I have what is commonly listed as one of the most painful conditions known.

    It took me the best part of 10 years to learn everything I could do other than medication to make my life a little easier.

    I meet lots of people who can't accept who feel medication etc is the only answer ,That find changing there life style pacing relaxation etc etc is very difficult to grasp. But in no way would I criticise this.

    It's so difficult to completely change everything in life and as I stated everyone is completely different.

    So while I agree acceptance

    Learning about your illness

    Pacing distraction relaxation etc etc will make a difference

    It's not possible that everyone can do this . It's not possible everyone can understand or learn these things . In the same way some people can't learn how to drive , or read and write, learn a different language think you get the point.

    My over riding thing as I said is everyone is different.

    This site is about support help and advice.

    Not about judging anyone

    We all deal with things in our own way. Maybe we could all do more but it's so difficult.

    I have yet to speak to anyone on here who has been disrespectful to me I just think everyone is desperate for help and advice due to chronic pain.

    Otherwise why would they be here.

    Many thanks dave .

  • Sometimes Davek723, just sometimes, spare a moment to think how it must be for those wives, husbands, families and friends of those we love and are wearing chronic pain like a pair of concrete boots. It appears they are never understood, never taken seriously,laughed at or ignored.

    No we do not understand.

    Those who live with and love them share every last pain - every second of every day of every year. They cry when they hurt. Cuddle when that pain is unbearable. Give up much to care when that person can no longer care for themselves. No we do not understand.

    Some of these people who care and cuddle those in pain work at the pain clinics. They are very special.

    Others are just husbands, wives, family or friends.

    But no they do not understand.

    But you are right. We have no idea what they are going through. Any more than you know what I am going through as a blind person.

    X

  • Hi there.

    Really sorry but you may have taken what I said out of context.

    I am mearly stating my point of view .with no direction towards anyone on here. I am sharing my thoughtson and views being a long term sufferer of a very painful illness. I think I said in my post I would never insult anyone on here and if you feel I have done so I sincerely apologies.

    Most of my post was regards pain sufferers

    And how the view other peoples response to chronic pain.

    Cheers dave

  • Yes so was mine. Sometime those who suffer chronic pain should stop, think and maybe understand how those who don't have chronic pain feel.I get told I don't understand. No and neither do I want to but when you live with someone who broke his back serving Queen and country you have no choice.

    And for the most we give our time, love and support to those we love. Unquestioningly.

    Do you know what it is like to be on the receiving end of someone crawling up the wall in pain? Banging their head begging for it to end? Finding they have overdosed on morphine?

    Just sometimes I get fed up with being told I do not know what it's like.

    x

  • I can't apologies enough if I have caused you any distress that is not my aim.

    I won't respond in the forum to this post anymore .

    I will happily have a chat privately if there is anything I can help with. I have many similar things you state in this post I can also see things from both sides having cared for someone for many years.

    Take care

    Sorry again

    Dave

  • I honestly do not know what your husband/wives would do without you. You all seem to be the most loyal of people and it must be absolutly unbearable to watch your other half in pain , or unable to eat and loosing weight by the minute. The strain must be enormous as you yourself have likened it to wearing concrete boots. god bless all you who care for your husband/wifes and families. some of us certainly do give you a second thought. love grace xoxo

  • Thank you Grace. Just wanted to shout STOP and got carried away!

    When I win the Euro millions I am going to have a big house built and all chronic pain sufferers are going to come out for some sun. On prescription of course! It won't cure anything but you can go home with a very enviable tan!

    x

  • aww thats nice. i was worried that you were really upset . im glad to see you still have your sense of humour. you wifes/husband do a great job of taking care of your other half. we can see that when we read the posts. when you win the Euro millions i will remember that you said this love grace xoxo😇 iv put that little halo there because you and all the other people who look after thier familys deserve it.

  • It is very hard to be around people who are suffering. You want very badly to help them, yet feel helpless that you can't do anything to help.

  • Can i also add I can't find the post that you are responding on . So can't comment directly. I'm assuming it's been removed. .thanks again

    Dave

  • Yes it is sad that just because medications that are used for pain can be abused, by a small section of people, Patients using them to have some quality of life can get tarred with the same brush by people with no lived experience of physically and mentally debilitating conditions. Just because it is not life threatening or cancer, it does not make it any less of a health problem. I don't know what the whole context of this was but you make some valid points. Let them eat fish heads Dale

  • You do sound angry and I think it is understandable and sad that if this ix happening in what should be a safe a venue to share your troubles. Possible source of support for people with shared experiences and sometimes not much resources to access. If it is being used as a platform for excessive judgement or even intimidating messages. Shame on anybody doing this to chronic pain patients willing to share their stories.

  • Yes sweetie your right! To many people and doctors throwing that word addicted out there! Ok well tell me? Who started us on these pain meds in the beginning? The doctors that's who!!! I live in Canada and have a little better health care than the US but not much. We need help . We need a fricken machine that you can put it on someone where they say there in pain and it will show the truth if your in pain and how much!! I mean all this machinery? Why can't they come up with that?? Anyway I totally agree there a bunch of baboons!!! Hang in there!

  • There are alot of key board warriors who will willingly upset and hurt people without knowing anything of a situation. It's hard to say ignore them as they are vile. They exist in all countries. If those that comment to help and advise. Stick together than we can flush out those who insult or belittle. Stay strong and positive and I hope you get the advice and information you need

  • Sadly you always get judgemental people buts its easiest judging from the outside looking in. Not everyone is the same, there are many people who listen and want to help because they have the ability to imagine themselves in other people's positions.

  • Are you doing ok today Dale? I can hear it sounds like a really rough time for you right now. I hope someone out there in that system you are dealing with will see their way through to give you a little of the help you need and somehow things will turn around soon.

    I have been to America and I get it. The health care system seems full of gaping pitfalls to me, or yes maybe just for those that can't generate a profit. The money I had to pay out for health insurance as a traveler only to US was beyond ridiculous and that is a reflection of how out of control it is compared to rest of world.

    Take care of yourself and fingers crossed for you finding the right person at the right time to help get through this.

  • You are a gem Hope.

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