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hI EVERYONE. Sorry but i`m really down today. All i can do is cry. If an animal were to be suffering like this they would soon put him down. Well that`s how i feel. Lucky Animals. I was wondering has anyone else felt like this and how did they cope. I know i should think of my family and be grateful for what i have but then the pain comes back and my doctor doesn`t really care. I cant sleep and find it really difficult to keep positive. Hope you can help me out because dying in my sleep is looking really good right now. All the best Sue

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  • Posted

    Hi Sue,

    At this moment in time I am so scared to move due to the pain I have in my hip and back....... something seemed to click back into place and for about 2 mins I felt Oh its sorted but to no avail it wasn't..... I am walking about like hunch back as the pain is so intense I cannot raise my leg due to the pain, it is so painful sitting here typing this....... I have degenerative discs and I had a x-ray on wednesday for my hips and I am so hoping something has shown up due to this pain as I feel like no-one believes the difficulties I have....... I have to crawl up the stairs as I cannot straighten my back I feel like I am a total burden..... a nightmare :oops: I seem to just have to put up with my difficulties as even claiming benefits is a chore too :cry:

    A doctors appointment you should make or even goto the hospital as this is what I am going to do if this continues tomorrow I am so sick of this pain no medication is shifting this neither, took tramadol etc but no it doesn't work....... I hope you get help soon xxx

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  • Posted

    Hi SES,

    You too sound in a very bad way. Don't think twice about going to hospital if you feel you need to. Follow your instincts. Nobody should have to suffer that pain. A lot of what I have just written to Sue's other post, I feel applies to you too. Having been there myself, I know what you are going through. I hate having memories of what I went through last year, but it was real and part of my journey. You too will come through this. In my darkest hours I used to tell myself that every minute of suffering the excruciating pain was a minute closer to it all being over. Seems silly now, but it gave me something to hang on to!! That and anger.

    I'll be thinking of both you and Sue today. Let us know how you are getting on. And don't worry about making a fuss by going to hospital, as a country we cough up over £100,000,000,000 a year for this lousy service!!!!

    Best wishes


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  • Posted

    Hi TFU

    I just read your other reply and bless you hun you have had your guardian angel over you hun as you got through that :wings: and I hope you have a less battle winning your case, thanks for your advice, I have just started taking Lycra along with anti inflammatories and Tramadol so I am hoping it does something for this severe pain......... something clicked into place somehow last night and I am hoping that this may have showed up on the x-ray that my hip had displaced somehow and then the doctors can see clearly the trouble I have, as with my experience they look at you as though you are stupid!!!!! :oops: thank you once again TFU xxxx

    Sue I hope you are having a better day xx my thoughts are with you today, I am still in pain :? gonna see how things go for now.

    Take care everyone :cheerup:

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  • Posted

    Hi SES,

    I'm pleased to hear that you are doing a bit better today. I too hate it when the doctors look at you like you have just flown in from Venus when you talk to them about your symptoms. Many a time, I have studied their faces as I have spoke and can see it in their eyes that they either don't believe me, think I'm exagerating (sp?) or they just look confused. Thank God for the internet!!! Some of my weirder symptoms have been so specific and it has pleased me greatly when I have looked them up to see that they really do exist and more than that, that I am not therefore mad!!! Rather alarmingly though, what they recall in the notes, is usually not what I have said and in some instances the complete opposite of what I have said. How on earth am I supposed to get any better when I can't get them to listen properly/understand???

    When are you next due to go back to see the experts??? Maybe my memory is going, but have you had any ops thus far for our back problems??

    Best wishes


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  • Posted


    I have been there myself & believe me it is not worth it! I tried twice in the past & I regret every single moment of it now. Just think of your kids at the end of the day & how they would be without their mother around.

    I am in constant pain on a daily basis & the docs will not prescribe me anything that works, nor will they administer anything stronger if I go to the hospital. After a while you will come to terms with accepting the pain (I have had to and all off my own back other than the support from the posters on here).

    Don't let it get you down else you will never get back on your feet.

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  • Posted

    Hi TFU,

    I have had degenerative discs for 18 months, I have Osteo of the hips and Fibromyalgia so the pain is constant!!!! I have just had further x-rays done (I Had last ones done on hips may 07) and I have to go and see the doctor so I guess the osteo has progressed?, although I was told it was not urgent to see the GP...... in the meantime I am in agony but I do not have the trust in the only doctor available this week so I am waiting until next tuesday when another doctor is available!!!!!!

    TFU Wrote.......

    [quote:89883eb657]Some of my weirder symptoms have been so specific and it has pleased me greatly when I have looked them up to see that they really do exist and more than that, that I am not therefore mad!!! Rather alarmingly though, what they recall in the notes, is usually not what I have said and in some instances the complete opposite of what I have said. How on earth am I supposed to get any better when I can't get them to listen properly/understand??? [/quote:89883eb657] I understand what you say here TFU as the doctors do not take note of your symptoms as I have found out due to my DLA appeal that I did have osteo in my hips and yet the doctor did not address this as my on going aches and pains???? :oops:

    Sue this site got me through the bad times as at one point I did not believe myself as the doctor did not listen but in the end I got the support....... now he has left the surgery and I have to re apply my ailments to another doctor??? :evil:

    Darren you should goto another doctor as I went to see another doctor last week and she sent me straight away for another x-ray....... why not even change GP's until someone listens as it is your right to be listened to!!!!! up to date x-rays may show further damage for example and then the doctor may take you more seriously???? Good luck x

    Take care everyone xx

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  • Posted

    Hi SES,

    If that is your picture, you certainly don't look old enough to have osteo smile smile It's ridiculous that it wasn't clearly flagged up for your DLA appeal. I know that a lot of prople try to claim benefits with a vague back pain and to some extent there is probably a danger of all claimants being tarred with the same brush, but I would have thought that where there is clear medical evidence it would be highlighted and that those who's job it is to be involved in these things would make sure it was. How awful for you, I hope that you are going to claim/appeal again. I am lucky enough to be able to work, but nobody here understands the hell I have been though. Again I know people think \"oh she has a back problem\" without having any real understanding of what that means. It is almost dismissed as irrelevant.

    You are quite right that an awful lot does depend on which doctor you see. Both in terms of their understanding and how much they can actually be bothered to help! At my GP surgery they seem to have zero understanding of neurosurgical problems. Don't know and don't want to know! After my first operation, I went to hospital the day after discharge because the dressing was all stained as a result of the wound oozing on and off since the operation. I tried to show the GP who wasn't interested and told me to get an appointment with the nurse. But when I went to reception the earliest I could get an appointment was in 12 days time. I begged, pleaded and tried to reason with them, but they weren't interested even though the stitches were supposed to come out in 5 days! Less than 48 hours later and I am very ill in A&E after a huge flood of CSF (spinal fluid) from my back. The hospital said that the GP (even through the dressing) should have recognised it was CSF but he didn't. Even now when talking to them it is clear that I know more about these things than they do. Why can they not be better trained??

    I am just so sorry that you feel that there is nobody at your GP surgery that can help, apart from one person who isn't there until next Tuesday. And in the meantime you are meant to do what exactly.......oh yes, struggle on in agony!!!! I'm sure that if the awful doctors had a dose of what you have got they would soon learn up on it PQD!!! Or if it was their wife......

    Years ago I used to trust doctors. I trusted them to do the right thing and I trusted them to have the necessary knowledge to help me, but not any more. I am far more questioning now. It isn't usually too difficult to catch them out if they don't know what they are doing/talking about. I just wish they would be honest and admit it, rather than letting people walk out of the room thinking they are in the hands of somebody who knows best. Most GPs don't work alone, maybe each surgery could nominate one GP to read up on, or do extra training in certain areas, e.g back problems, menopause, asthma, stroke etc. How does the saying go......Jack of all trades master of none!!!!!

    Best wishes


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  • Posted

    hehehehe TFU that is Cascada lol I have been told I look like her so I thought I would put her as my pic lol........ I am 36 in September so probably about ten years older than the pop star! :lol: but still the pain specialist says I am too young to have a hip replacement so it appears I have to suffer for another 25yrs!!!!!!

    The pain by the osteo is driving me nuts, I cannot sit without it hurting so much, another sleepness night as every time I turn over I wake up somehow????? luckily I do not have to worry about household chores as my 15yr old does this along with looking after my 2yr old son so I am blessed I have help that way.

    It appears you have been to hell and back and you are right in what you say when doctors in surgeries should have their own designated specialist subject instead of being a jack of all trades...... the doctor this week I will not see as I do not trust him what so ever...... a guy that I knew was given heart tablets for 8 years and my doctor asked if he had been sent for an ECG he hadn't and so had been on the wrong tablets for all those years....he had angina !!!!! my 10 yr old daughter at 6months old I was told she was teething and I was an over anxious mother..... it turned out after taking her to hospital to see another doctor she had German measles and tonsillitis, so you can see there is no trust in this doctor!!!!!

    Take care TFU and I hope everyone is feeling ok..........

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  • Posted

    Hi Sue firstly i want to say its great that you are on here and feel you can share how you are feeling. I know this sounds corny but it really is true when they say sharing your problems is the best thing to do,even if right now you are not feeling it.

    I can really relate to how you are feeling on 2 levels firstly because it was 5yrs on the 14th august that my father hung himself he was 58 and i was 26 when it happened. He really was in a bad way mentally and suffered depression due to poor health. His actions destroyed a part of me that il never get back and although i get on with my life my heart is still so heavy and sad over what he did

    Looking at the 2nd level i can fully understand why my dad did what he did. I know people see it as weak and a cowards way out but BOLLOX it is not!! He was a very courages man to do what he did it was not selfish as he did not only want to stop his own suffering but that also of his childrens.

    Having to see him suffer and no 1 wanting to help him was gut renching.

    When you are in a place so deep and dark that you feel so alone and no matter how many people you have around you for support you can still feel incredibly alone and scared.

    I am a mother like you and i know you feel wrong and no doubt a bad mother for the feelings you have but let me assure you you are not a bad mum far from it!! You are however a human being whos suffering is beyond anything you could ever imagine and it is not just about physical pain its about the pain of feeling like a useless person not being able to fulfill the role of wife mother friend daughter etc.

    I have been where you are many a time. I was raped when 15yrs of age by 2 soliders then for 6yrs was in an extremly violent relationship with the father of my 2 BEAUTIFULL GORGEOUS daughters where i was beaten and emotionally abused. Then with my dad hanging himself i did not think things could get much harder for me and us as a family..

    then i had my accident at work which was 20mths ago now. I suffered slipped disc and severe muscle and tissue damage and now from that i am registered disabled i have to use crutches to get around my bowel and bladder have both been affected and damaged. I suffer with pain every minute of everyday. Some days are better then others and i can cope then other times like you i just want to close my eyes and never wake up!!

    My care is shared between my husband and best friend who have both been rocks. Espec my husband who after getting out of the abusive relationship has made mine and my girls lives WONDERFULL he is my world and is an AMAZING father to the girls and without him and my children i am nothing.

    I have called samaritans before and have even decided how and where i would end my life when things have been so bad but that is where the difference is ....i called someone. I dont want to die i just want medics and proffessionals to sit up and listen and help me which is what they are paid to do!!

    I take tramdol pregabalin venlafaxine and diazepam everyday i have had an epidural and dorsal root block the epidural did not work the root block did give me some respite but i am now back to square one and my consultant tells me he has no idea what to do with me now ha CHARMING HEY!!

    I have requested a second opinion which i have on the 1st september. I am sick of medics not taking us seriously and making us feel its all in our heads as if we have nothing better to do the PRATS!! Even with a pile of records that show physical damage to my spine bowels and bladder its all in my head HA HA i have to laugh or il go NUTS !!

    Anyway im coming off the point i wanted to make so sorry. All i want to say is you are not wrong in your thoughts nor are you alone. But everytime you can open up and share how you are feeling is great. I know its easier said then done but look at your children you know how blessed you are we are all blessed as parents.

    And take it from a child who has lost their dad to is H

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  • Posted

    Hi all

    On the note of suicide....

    It must take a hell of a lot of courage to take your own life.

    I know because on many occasions I have really wanted to do it but never been brave enough to do so because things like family get in the way.

    It is most definitely not the cowards way out.

    May your dad rest in peace luckmun xxx

    Melbi x

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  • Posted

    Hi Luckymun,

    As Melbi said may your dad rest in peace x, I can understand your feelings Luckymun as I at the beginning my mum remarried to a wife beater and to this I lived with my grandparents from 2 years old......I watched my granddad get gangereen get cut up limb by limb and confined to a bed at 8....... raped by an uncle at 12......after grandad died found my nana on the floor after giving birth to my eldest daughter by c section at 21...... and she was in a coma for 2 weeks...... my Nana woke up senile dementia, blind and unable to move...... and so I stayed with a man that physically abused me, physiologically trapped me into a state that I felt I had no return......... self harming myself, wanting to end it, even caught him in bed with someone at 28, he used to say \"your ugly, nobody will have you\" and so the humiliation continued...... until his bit between his legs took hold and he entertained more, and to this I thank him as this is when I met my present husband, my soul mate. My Darling as a friend came to my home as a friend, he played the guitar and I sang with him ........this increased my confidence as I believed I could not sing due to my ex saying I couldn't and then at 32 years old I thought I cannot go on like this...... 8 years time I am 40!!!!!!!!! and so I told him to leave and he finally left on mothers day 5 years ago.......a great mothers day present too hehehehehe the day I kicked my first husband out the house I got my friend Karen to phone my present husband saying I had feelings for him...... as he is her cousin and then two weeks later our friendship grew!!!!

    There is no happy ending however, as it began my career started to change for the better and then I found I was pregnant with my delightful little boy a year later..... a big baby 9lb 1oz and after returning back to work then the pain began......... banging my head against the wall no medical practitioner wanted to listen to me as I felt they thought I was a hypochondriac or something............. the pain started and I felt at so a low eb as I started to think what has my husband married, I am a burden, all I do is moan and what is it....... I felt can I go on like this......... then my daughter told me that a guy I had babysitting her had sexually abused her too and of course I was devastated, this was whilst I was in and out of the relationship with her dad four years before and so I blame myself......... my daughter has a boyfriend now and seems to be level headed as he supports her....... just the thought of history repeating itself........ and now the pain is day in and day out and many times I have thought this pain is so unbearable and I do wish that it would go, feeling like I didn't want to wake up like I did when I was 12, but then I think I have my little boy that brightens my day and the love from husband and my two girls I feel that although the pain is so harsh, it is nothing to what I had put up with and so the fibromyalgia, the degenerative discs and osteo have just took hold now as I am getting older...... just something I have to except and put up with as all I can do is take one day at a time and thank my lucky stars I have the support from all my loved ones xxxxx

    Thank you for reading this and I am here also Sue just hope you are coping xx and well done Luckymun & Melbi we are survivors and we fight for our right to be here !!!!

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  • Posted

    Hi luckymum,

    Well your post certainly hit a chord with me. My stepfather committed suicide in 1990 caused by problems with his slipped discs. He had various surgeries some years earlier, but it made him worse, he had got all fused up and was in constant pain. Actually I really hated him, couldn't stand the bloke and I knew what he was going to do and I didn't do anything about it. I don't regret that, I believe that everybody has that choice to die. But I must confess that after my botched surgery and ongoing problems I do wonder if I will end up going the same way. Worse than that in my darkest moments I do wonder if what has happened to me is my punishment for not saying anything about what he was planning to do. In my very irrational moments I even think that maybe he is haunting me, or at least controlling this from the \"other side\". I too have a past littered with abuse and I have Complex Post Traumatic Stress Disorder as a result with everything that goes with that including suicidal thoughts and self harm issues, although I have been very good about that for the last six years. For me, my back problems signify that my physical state is fast catching up with my mental state. This sort of brokenness. Most days I can clearly separate the two, but not today. I am suing the NHS for the botched surgery and as part of that my solicitor is nosing around my old mental health records and I hate it. Every attempt in the past at getting specialist help has failed and I have done everything in my power to do what people with Complex PTSD (and DID) do, I just want to push it all away, bury it and live in perfect denial. As I am highly dissociative that is actually fairly easy. I also have PTSD issues from everything that I went through at the hands of the NHS resulting from the botched surgery. It is hard.

    I'm sorry to hear about your Dad, it must be awful if it is someone that you care about. It's good though that you have a psychoanalyst to help you through the issues of the past. For about the last 7 years I have been in contact with probably the best psychoanalyst in the country for dealing with extreme abuse issues, but she can't treat me without the funding and the NHS turned me down. She has however been my rock and I will forever be grateful to her for being there through some very dark moments.

    Then on top of everything else you have your accident. Do you ever sit and wonder just how much more crap can be thrown at you??? I do. Just when I think things can't get any worse, they always do. I see that you have an appointment for a second opinion on 1 September. It's not at NHNN (UCLH) by any chance is it? I'm going there on that day. I am changing hospitals and this will be my first appointment. Not that I want to go, I'd much rather just shovel it all away. How the hell do I trust this lot to be any better than the last lot?? I'm sure I've been set up anyway. I have two appointments at the old hospital on Friday to discuss with the Consultant the urodynamic test results and then in the afternoon more poxy tests. I expect you have had those done if you have bladder problems now. I hated every minute of it. It was horrible, degrading and nasty and I resent the fact that I had to have them done at all. I wouldn't have needed them if they hadn't cocked up the first operation.

    I don't even know why I have written all this and I have probably said way too much, but this has not been a good day. I think that if I were to scream then I would never stop. For that reason I can't. Actually, I'm too numb and spaced out from the dissociation most of the time anyway! My head is spinning and so it's off to bed for me. I'll probably cringe when I read this back tomorrow....but maybe it's better out than in!!!


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  • Posted

    Before i say a thing i firstly want to say NO WAY should you feel silly for what you have written and you did not go on too much all you did was share your experiences and for that i am really gratefull.

    Its a double edged sword being on here because its great to be able to talk openly with others who are experiencing the same or similar but then it is also heartbreaking to read others stories and see the pain and hurt they have been through. MY HEART PRAYERS AND THOUGHTS REALLY DO HONESTLY GO OUT TO EACH AND EVRYONE OF YOU.

    Yes i am under the NHS which like yourself im finding a problem. I have just been taken on by a highly profiled team of lawyers in this country they have represented some hugh cases which have been covered world wide by the media so im hoping im on to something good with them...well i bloody hope so as they cost enough ha!!

    There is a black and white case against my employers they were neglegent and this can be proven without any effort at all....although saying that ofcourse they are not going to just roll over are they!!

    What is happening now with me is my lawyers clinical neglegence guy is looking into all my records because he feels that i have not had the right treatment and that they are not taking my situation seriously enough.

    The only examination iv had regards my bowel and bladder is when they use the pin to check for numbness...THAT IS IT ha!!

    I dont like talking about that part of me as it is embarrasing but i have to otherwise il never get any help.

    When i am passing water everything goes numb and cuts off so i belive i have finished then i wet myself or i can just be laying down or stood up and without any warning or sensation i will just go to the toilet there and then!!

    With my bowels the same applies in the sense it is numb and i feel like i have no muscles in that area. Iv never been caught short my problem is the other way which is i never feel like i need to open my bowels. It has been awfull because where i have not realised i have not been to the toilet for so long when i do finally try i can not go because my muscles will not work and everything is blocked [my tablets do not help as they cause constipation} I have had to remove my own stools on quite a few ocassions which has been so traumatic humiliating and painfull I HATE IT!!

    The only help iv been given is lactulose which is bloody stupid as yes ok it makes me go but only because of the medicine this does not get my muscles to work so i can still not perform properly..for want of a better word ha!!

    I shall be discussing all this on the 1st and requesting another MRI as some still belive i have underlying spinal problems which obviously if you look up spinal injuries mine SMACKS of that!! And ofcourse i had the original injury so need to be sure all is healed.

    I really feel like telling my consultant to F**K OF at times as he makes me so upset and belittles me!! He tries to blind me with medical science and yes ok il admit im an Essex girl annd NOT THE FIZZIEST DRINK IN THE FRIDGE at times but saying that im also not bloody stupid!!

    They think if they intimidate us and treat us like they do we will give up and fade into the back ground well they have no chance of me EVER doing that im up for a fight and a fight they will get!!

    Thank you so much for your kind words about my dad it has been so hard as i was so close to him and he came and lived with us just before he died. He had taken overdoses before but obvioulsy then didnt want to die as he told people what he had done so he could get help.

    The doctors and hospital etc all failed him we tried so hard as a family to help him even my mum did and thay had been divorced 12 yrs.

    I was the last person to speak to my dad and so had to do a witness statement for his inquest it was so hard because the coronor left the room with my husband and whilst i was sat alone i looked at the file infront of me being a typical nosey bloody women...that is something i wish i

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  • Posted

    Hi Everyone i know it`s been a few days since i posted but here goes. I feel great although the pain in my legs are still there i`ve found a medicene that takes the edge of the pain so at least i can ride in my car. I have taken up reading. I forgot how much i enjoyed to read and it distracts me from the pain. My doctors arranged for me to go physio to see if that will help and i got an appointment on Tuesday. (they move fast around here). I finally accepted that this is not going away anytime soon and i`m just going to have to concentrate on myself and my children. Lucky Mum you are the most amazing person i have ever spoke to. You`re right when you say you have to have a great support system at home. My partner and i have been together 20 years (not married though!!!!!!!!) and i don`t know what i would do without him. I also have a great duty worker at mental health. When i felt down she was never in a hurry and talked to me like i wasn`t crazy but a normal human being that`s going through a bad time. Mornings are the worst cause i can hardly get out of bed without my painkillers. i`ve also started to shop on e-bay. It`s surprising how much time you can eat up just window shopping. Anyway i still have my bad moments but not so bad. I can go out now started to take up walking just little bits but i also had A BLESSING from a couple of friends from the christian church. At this point i`m willing to try anything. That`s my news All the best Sue
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  • Posted

    :cry: Ah bless your heart made me cry with what you just said about me being amazing...what a kind,thoughtfull thing to say. that is happy tears by the way not sad :D

    Its great to hear you sounding more positive,and the fact you sound like you have been alot more productive with your time. Like you have just said it helps when you keep yourself busy and concentrating on other activities.

    You said about praying sue,well i hope you dont mind,but i have been praying for you...infact i pray for each and everyone of you that are suffering and for all your familes who suffer along with us.

    I have a couple of devoted christian friends who come to my home as i can not get out to church much. Like you i will try anything,and because i belive in the great lord above i have been recieving healing prayers from my friends.

    They have been wonderfull and also i am part of their prayer chain. If well enough i also attend a healing service which is held in a church in the next village to where i live.

    I have found my experience with this a mixed one. It has been extremly emotional and powerfull,but well worth it. I have asked for you to be placed in the chain Sue.

    You really did touch me with your post the other day,and i am glad you have made contact as i have been thinking about you alot and wanted to know how you were.

    Il admit being an Essex girl im not exactly THE FIZZIEST DRINK IN THE FRIDGE and i could not work out how to email you direct ha!!

    I sat for ages streaming through all the names on the members list to try and find you so like i say im so glad you have written again.

    Its great you are getting some more help from your Gp. Hopefully the physio will be of some help to you and give you some respite from the awfull pain.

    Your relationship with your partner sounds wonderfull. it doesnt matter that you are not married,what matters is you are there for each other. You are an inspiration being married 20yrs sue...what an achievement!!

    I have been married to my husband for 4 yrs now and been together 6 [i only got married as there was sod all on the telly that day...and i just love wedding cake haha!!}

    Having someone by your side in times of trouble and darkness is priceless. Even though at times we feel alone and that even our nearest and dearest do not understand they still never walk....well not when its real love and devotion...which is what you have sue.

    Also you think while we are hurting and feeling low so too are our partners. They hate to see us suffer and know they would swap places with us if they could.

    In times like this partners are often forgotten in the sense of their own wants and needs....i am not saying not loved,just perhaps more in the background then they usually would be. I know i am guilty of it.

    Then i sit and feel awfull because this poor man is doing everything he can to keep the family going and to support all my needs...which now are obviously more then they have ever been.

    and all i do is concentrate on myself and how il be tommorrow...will i be able to get up...will i be in horrific pain...will i have problems with my bowel bladder etc..

    I do more then ever now think of my husband and how he is finding things. Because i am aware of what i was like i can be sure not to be like that anymore. As we know what is happening to us in our lives right now is not just happening to us it affects us all.

    Just thinking though pls dont think i said all that Sue because i was implying thats what you are like...far from it my love.You are aware of your husbands wants and needs and that of your childrens which i think is are amazing not me!!

    To feel like you do,to be able to express that and except the good with the bad..and then to pick yourself up and continue your bloody hard journey in life...that to me is inspiring...i really hope you are proud of yourself in life sue as a mother,wife,daughter.friend etc because you should be.

    Like i say your p

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