is it only me thats feels by changing my life to reduce the pain is in a way letting it beat me.i seem to have real issues coming to terms

[komet]

is it only me thats feels by changing my life to reduce the pain is in a way letting it beat me.i seem to have real issues coming to terms with the effect it having

[thenunn]

Hi Komet ,no its not just you ,Im having the same problem. Im sat here looking at my garden that needs sorting badly,a few years back I would have had it done within a couple of days , now it would be a couple of months..I manage ten minutes here and there and thats it. Im frustrated that I cant do like i used to and that i have to ask and wait for others to do what i used to do. It is very hard coming to terms with that .

best wishes jan

[Calceolaria]

Same here. I am probably still in denial and thinking I will get better.

[teadrinker]

No, thinking in this way is not admitting defeat! You are doing what you have to do in order to get by, and any realistic person would do this. I used to have a big problem with this concept myself - "If I stop doing X, Y and Z and start doing things differently that might make the pain reduce, therefore people might think I've been putting it on, and the hospital will just discharge me if I get better when what I really want is someone to make me better with a pill or an operation."

Of course I would like someone to come along and magic the pain away. I wish I didn't have it. But it has got much easier since I decided I'd have to do some of the things I was reluctant to do in order to change the situation.

It's not easy accepting something that you never wanted in the first place, and despite knowing all the psychology behind grieving / acceptance / managing a long term problem, I think it's still human nature to want to be cured and to wish for things to be different.

[Hidden]

Hello

One way of looking at this is we all need too live within our pain and lookout at chances to defeat it. At the moment I am failing badly my pain bites back from the people looking back

at me

All the best

BOB

[Calceolaria]

Makes sense, Teadrinker, Bob and Nunn.

[rowantree]

Komet I agree. I find it so hard to accept this is my life now. I too expect it to get better and go away. I keep hassling the drs to cure me, or manage my pain. I'm doing the expert patients programme online, which helps me motivate myself to change things and manage the pain better.

[Hidden]

Hello

I suppose we all go back to the doctors, and ask him to cure us, I was there last wednesday

I was asking to have the mental angush blown away, it now is there all the time,and I feel that I will die around this condition and now the wife has too hide all medications, as I have tried in the past to take overdoses.

In honesty,the acceptance of our conditions, is what all of us try,and generally fail badly

[Boozybird]

I tripped over in the street earlier in the year coming home in the dark - a builder had left those plastic tie things lying around......I literally fell on my face - badly bruised knees but my ego was the worse affected. Ive had a really bad year coming to terms with my situation so falling on my face felt like a metaphor for failing and being at rock bottom. Cant work, tried, couldnt cope with the extra pain and the stress, so fail. Friendships, all crap as I cant get past being offended that people are so insensitive about the pain, so fail. Oh, theres a long list of me feeling sorry for myself - and now I think so what. Yes, there are people worse off than me but then there are lots much better off....so good question there komet, yes, its a real challenge coming to terms with all of this.....

[Hidden in reply to Boozybird]

Its just like joining the AA - my name is zanna and I have chronic pain. Acceptance is the first step to recovery. In our case recovery is living in harmony with our pain - contolling it and not the other way round. Respecting and welcoming its limitations. Exploring our innerself while we journey through life with pain as a companion.

Moaning is negative all it does is confirm your own negativity towards pain, and the more it spirals down the tighter it gets until you can't believe anything but your own thoughts. Then everything in life becomes doom and gloom.

Try and do one thing a day that makes you truly happy - might be a half hour with Ben and Jerry, getting some flowers for the lounge, playing with children or pets, eating all the jaffa cakes. Different days it will be different things. Then apply the same to doing things with pain. It might be simple like using a mop to clean your windows instead of trying to stand on a ladder, or get some ready meals because you are too tired to prepare food in the evening.

Lifes an adventure and life with pain even more so.

[Hidden in reply to Hidden]

Zanna, you are so right. It has taken me many years of pain and grieving to accept my condition and live within it. By accident I moved to another part of the country where I met friends who accept me as I am, and the pace of life for everyone is slower. Yes, there is some bullying, but more from the medical profession than "friends". I have found other enjoyable things I can do, and the beautiful scenery makes a huge difference. The hardest thing was letting go of work - a long mourning process of several years.

[komet]

so not just me that fights them demons then, its good to talk thanks,

There a lot more to just the daily pain to deal with it does drag you down dont it.. and not even gonna talk about the drug addiction from the need to use so many opiates to function

laters ppl tc xx

karl (komet)

[Hidden]

Change is good, perhaps if we had all been living our life the way we have to now, we might not have the injuries and conditions that we have now. Pacing is good practice, and it relieves the boredom of a dreary task if you break it up and do something else alongside it. Its just another form of multasking. I enjoy the challenge of working out how to do something and plan it all.

Every situation has a positive spin, its just finding it for yourself. It may be that you would feel guilty taking an afternoon to read a book, but if you read a chapter, do a bit of housework, read a chapter etc, you get to read your book and get the housework done as well. No need for guilt because to the outside world you were working and resting.

Komet, I think of my pain as - this is me now. I live in now and all I have is now to worry about. What can I do now? then when that now is finished, what can I do now?

Now only matters because this is where we are. The past is gone and can't be changed. Nobody knows if there's going to be a future the next day but we all accept that there is, because we know from experience that we wake up to another day. We plan holidays, weddings etc months in advance. Sometimes the plans have to be changed because of what has happened in their now.

You don't have to accept the pain for ever, just accept it for now. This is me now.

I do find the frustration harder to deal with than the pain, especially on better days when I still have to hold back so I don't overdo it. I find the restrictions on my abilities frustrating and I occasionally have to fight with myself not to do something. I hate having to plan everything in minute detail. I used to be spontaneous. Others don't understand the planning either - they just think its a control issue. But if I'm going out for the day, I'm going to be on my feet longer, need frequent sit downs - cafes/benches, toilets, plan a circular route with the shortest distance, can I use the bus part of the way? what ticket to get? time it all so I know I can get everywhere before closing time. I hate planning.

[Kat3]

I feel the same way, Komet. I hate the way my pain seems to totally control my life! I feel like it has won, somehow. This is very frustrating. It helps to know there are others in the same situation. But the unfairness of it all gets to me – why me? Yes, I know there are others in the world worse off than me, but as Boozybird says, there are so many much better off. I struggle with jealousy a lot – jealous of my friends and family for their ability to do whatever they want – mostly just the fact that they are able to leave the house! (I am housebound) It feels so unfair – why do they get to live their life and I don't? I even get jealous of people who have normal illnesses that can get better and at my darkest times, I'm jealous of people who have terminal illnesses, as I often just don't want to be around anymore – I don't want to live a life full of pain – I just want it to be over – either the pain, or my life. It is so hard to accept having constant pain and not being able to do the things I used to do. I know the best thing to aim for is to live in the now – but that is really hard! I try to do some meditation every day, as that is meant to help. Though it can be annoying, the way they always go on about mindfulness meditation/deep breathing/etc in pain management courses. Perhaps it does help though...

[sargrith in reply to Kat3]

Hi Kat3. I don't know how you really feel, and neither does anyone else.Our conditions are peculiar to each one of us.Never say there are others worse off as it is only your pain that's important, other peoples pain has no relevance to you as it's impossible to compare one persons pain to another's, and even if it were it's still only your pain that's relevant... And no, life does not seem fair, but most people have their times of feeling that way, but it's all about degree I suppose. I do hope your condition improves as I do detect you are really low. I am beginning to experience varied unpleasant painful conditions but not unbearable as yours appear to be. I'm 86 so must consider I've been very lucky in life regarding constant pain that others experience. Best wishes to you and all others who suffer with little or no relief.

[Kneesup]

Hi, komet, i am exactly the same i have had back problems for 18 years and i have now given up doing any kind of decorating or DIY, also i used to go for long walks but 5 mins is enough now, so dont worry about it i think most back sufferers are the same.

[Boozybird]

Sometimes why not just feel bad? It's honest. It's how I feel. Is it really the slippery road downhill? I don't think so. All this stiff upper lip stuff does just that, gives you a stiff upper lip. If acceptance is really worth doing then lets accept feeling bad is ok and not brush it away. Negative feelings are valid. Society is really bad at accepting negative feelings its like some dirty secret. Dark feelings pass like clouds, hence the dark cloud metaphor. Lets not fear them. Who's seen the film network where the hero shouts, "I'm as mad as hell and I'm not going to take anymore!" We'll, today, I'm as negative as hell, so what! How's that for coming to terms with pain?

[komet]

kneesup it not my back thats wrecked its femeral and inguinal nerves that are wrecked,any fealing of touch heat cold etc are sent to my brain as pain , result of poor surgery in hernia op , followed by 2 failed opps. more to put it right. the upshot is constant pain ,it did get to me in january was very low point.doing 16/17 tramadol a day so could keep going took its toll. result is i had to swap changing everything around what agravates it,

And only option left is to get them nerves in my back risky opp not playing them odds,

well i say that bat on them days when climbing the walls with pain the odds look better,

[Maggiet]

Morning everyone

Like many of you here I have been told to accept my condition and the limitations that it brings. I have small fibre neuropathy. Bugger off, I said, I'll never accept that I am like I am, in constant pain/discomfort, weak muscled and worn out. I had this rage inside me about this condition and was permanently depressed. You may notice that I am talking in the past tense, Now, don't get me wrong all those feelings still apply, but on Wednesday I saw a brilliant specialist pain nurse at the pain clinic at Perth Royal Infirmary in Scotland. I had my usual rant of how I am fed up of being told to accept what I have, that I never will and hope that each time I visit a doctor/specialist etc they will have found the magic cure. What she said next was the first time this has been said to me. She said, no, you don't have to accept it, why should you? People with cancer aren't told to accept it. But what you have to do is adapt and have the confidence to deal with the the restrictions constant pain brings. She suggested that if I go out somewhere to say after 20 minutes that no, I cannot go any further, I need to sit down and have a rest. I have been pushing myself as far as I can and then been chair bound for the next 2 days as I recover. She said it was up to me to decide if it was worth pushing myself and then be out of normal living after. For example, when I visit my grandchildren in England, I feel it is worth it to take another day's holiday after I return to recover, but it is MY decision and no-one elses. I fully appreciate that what I have put does not apply to so many people on this site who are totally immobile and I am not trying to be patronising or teaching grandmorthers how to suck eggs. This is just my experience and if it helps just one person then that is good. The nurse in question has put me forward for a 6 week pain management course - just need to get the ok from work for time off! Good luck to everyone of you and hoping for not only a less painful time for us all, but the understanding of others that although pain is invisible it has a HUGE impact. x x

[Harrison27 in reply to Maggiet]

Hi there that great to know as I too attend the PRI pain clinic and I have to start the pain management course. Did the nurses name start with an M? I just wonder if it is the same nurse I have seen in the past? I think they are really good in the PRI clinic but seriously over stretched as they clearly need more staff. I'm glad you have taken a different way to look at your pain and I may see you on the pain course (I believe you can join at any stage of the course and you don't have to wait until it starts over again to commence the course), I was looking at Perth or Dundee (im from Blairgowrie) as I believe they do evening sessions too. Good luck. Charles

[Maggiet in reply to Harrison27]

Hi Charles, thank you for your reply. I can't remember the nurse's name - I'm just so rubbish at remembering people's names!! The course she wants me to go on is the pain management course, it starts in August on a Tuesday afternoon so may be different to the one you mean. I do know about the one you are referring to, though. Unbelievably I am now suffering from facial shingles! Now, I thought I knew what pain was but boy does this top every pain I have ever had, hence being awake at stupid o'clock!! Good luck with managing your pain, it is so debilitating #understatement!!

[Hidden]

Hi Charles, can't add much that can top anything here in these very good post's above, but maybe you might know me or my family, I now live in London and left Blairgowrie a long time ago, we lived in Provost road, and everyone knew me as Sandy MacDonald, and came from a large family, (do not know how old you are) but maybe we went to same school, Blair High, though I was rarely there, anyway best wishes, (Now' Alex,)

[Zen1957]

Evening all,

Well there just isn't anymore to say but "thanks"

Take care all, lets keep talking

Sue

Xxxxx

[Hidden]

To komet, are you really drug addicted or just been freaked by the cultural propaganda around opiates? My excellent consultant, when I expressed this fear, replied: :opiate dependence is not addiction. Addiction is when you behave badly to get more supplies of the drug than you are prescribed. I would rather be dependent, if I am, than in pain. 1 in 3000 users of opiates for pain becomes addicted, whereas 3 in 1400 users of ibuprofen or Voltarol will die of a stomach bleed. Quite a difference! Good luck, there are 300 drugs you can try, most only through pain clinics.