Susie Q

Mrs B Whatever feels right is right. I've come to trust my judgement on these things but as time moves on (16 months - not long in one sense but it still feels like a lifetime) I find that I have the need to tell others much less about the things I do to stay connected to him. I know it probably shouldn't be necessary, but because they are all trying to be helpful, I share with those I know who will understand and tell the others only what they need to know. Keeping important relationships together has been a high priority for me since this nightmare started because I know how fragile, edgy, emotional and cranky I have become. And also, I accept that they just don't understand - like I didn't understand before it happened to me. If it feels right to tell your sister - then do it. If you have doubts about the outcome, then ignore her. Recently I'm starting to feel like he is here with me in everything I do, as opposed to the earlier times when all I could feel was his absence. I'm thinking that the brain must start to accespt the status quo as the 'expected' after a little while which must leave room for other more gentle and happy thoughts to get through. So now, when the silly comments come, I share my frustration with him - and then I probably smile because I know exactly what he would have said. Is that crazy? - I don't care - it gets me through another tough time and that's what I need to do, for me. ...Susie Q

I realised today, with a shock, that since my husband died 16 months ago, I don't laugh anymore. Even when I feel OK and am enjoying a rare moment of peace or when something amuses or pleases me, I seem to have developed this closed mouth smile. But today a close friend and I shared a really hilarious experience that had us both in tears with laughter. Suddenly, I noticed how very good it felt and how long it had been since I had an ordinary happy moment like that. At that exact point in time she said "You know, he loved the way your eyes sparkled when you laughed". Of course I burst into tears and she looked miserable and apologised profusely. I tried to explain that what she had said was beautiful and that she hadn't upset me - that she had just told me something wonderful. But the sense of enjoyment was well and truly gone and the grief monster was in charge again. I was also known for my big smile and as a friendly, warm and welcoming person. People used to say that they could see our happiness and the love we felt for each other on our faces even after 32 years together. Wherever we were we had fun and shared that with those around us. Even apart, the sense of contentment kept us happy and vibrant. I try not to look miserable all the time but I guess there's no hiding it. I know the light has gone from my eyes and my life - and tonight I'm left wondering if I'll ever get some of it back. We lose so very much of ourselves as well as the one we loved. Seems like a double blow. I don't feel guilty for wanting to just feel happy again sometimes - I am clear that it's what he would want for me beyond anything else. Just don't know how to achieve it and it feels like it's something I remember from three lifetimes ago.....Susie Q

Dear Martina You can't upset anyone here - we know! The pain, despair, heartache, constant replays and waves of sobbing are all part and parcel of the lives of this group. It's been 16 mths for me and most days I can look and seem normal (people judge this as me 'coping better') only those who have gone through it will understand that it's all a charade. What changes is that you are able to pretend for some parts of the day after a while. I look forward to the time when I really do feel Ok for some parts of the day. You mustn't expect that these feelings will go away easily or quickly. But why would they if you had a great love for him? Accepting this means that this could be a long process. I have been able to give myself permission to feel bad / low/ depressed when it hits me. That came with help from a counsellor. It was the best thing for me because it meant that I am giving myself time to adjust to this upside down world. I'm not the same person I was, so I, and every one else needs time to get used to that. Be kind on yourself and come back often...Susie Q

I definitely have the same behaviour - I know he's gone but I find myself saying 'can he really be gone forever - it can't be true' over and over again. My counsellor says it's a mechanism by my mind to help achive acceptance of a situation that's just too hard to comprehend - like a programmed reality check - ask the question/give myself the answer / move on ....then repeat until the answer becomes embedded somewhere, sometime in the future. She says it will eventually stop ... well 16 months on I'm still asking the question. I felt the need to put the little things around the house away very early on. It was unbearable to see his yard shoes at the back door, his reading glasses in every room, his golf and camera books on the bedside table, his wallet and car keys waiting etc. It was too pinful a reminder in those early days. As for other things, I've recently started to deal with his special belongings by giving them slowly to special people who will cherish them - his new watch to a favourite nephew, his golf clubs to his favourite brother. I have also recently packed his clothes away in suitcases and moved some of my things into his wardrobe. Can't give his clothes away just yet -but I'm a step closer to that. I have done each thing when it felt right for me and I've started and stopped a few times too, so my advice is that you'll know when it's right for you. If it's too painful, then stop - the timetable HAS TO BE YOURS. Has it helped with the denial? No, not really, but what will? It really is too awful to be true, so I understand the continual questioning. I talk to him in my mind, I see him with me, I seek his advice every day but I'm not hallucinating that he's actually standing beside me so I don't think it's a problem. Coping 'with reality' is a bit over-rated in my opinion. I've learned to do what works for me in order to survive. I don't feel guilty about doing anything with his things - that's all they are - things. I'll keep those belongings that I feel are important to me, I'll share with others what will be a special remembrance for them and the rest I'll eventually donate. I rationalised that he's in my heart now, not my closet so he'd understand. Good luck and be kind to yourself on this one - it's a really emotional task and a huge hurdle to get over....Susie Q

Dear Marty How very true. In mid 2010, my very closest friend needed help after developing severe anxiety and depression. After losing my husband the year before, and all the despair that goes with that, I just didn't know if I had any reserves left to help her, but I was surprised at how naturally it came to step up when needed. I have stayed close to her, as she did to me, and I think in many ways it has helped me too. It is a matter of taking turns - and along the way and by helping her, I've gotten to see all that is still good in life. I needed that perspective badly. Goldensunshine 897, it's always going to be a struggle through the deep heartache and loss you feel, but on some days down the track you'll see the possibility of improvement. The shock stuns you at first, then for me, it was endless tears but now I've learned to control when I let the grief take hold so that I can live some of the other hours in a reasonable state and shed the tears in private. I send you my best wishes at this awful, awful time...Susie Q

Sorry, second try to attach file Pg 8 Annual Report DonateLife 2009-2010 .pdf

Hello everyone It's 14 months since I lost my wonderful husband to a cerebral haemmorhage - no warning, no previous health issues. It knocked me sideways so far that I had six months off work. Like many of you have said, I also have forced myself through sheer willpower, meltdowns, despair and an aching heart to return to the life I loved so very much before this nightmare happened. Bill, I'm pleased that you see some return of good times ahead. I am yet to find any peace or happiness but I can now enjoy parts of days or functions, so I also believe it is possible. Without that hope, I don't think I could get up in the morning! Yes, it is really hard work to get out there and most people have no comprehension of that, but it's the only way to make the second time and the third time easier. My husband was always committed to organ donation so today I am thinking about the families out there that have just celebrated a second Christmas and New Year with their loved ones that wouldn't have been possible without his caring generous nature even in death - the only positive thing that could come from this immeasurable loss and heartache that my family are feeling at his loss. Perhaps you'd like to read a little about him in the attached file (Pg 8) from an interview I was asked to do for the DonateLife Annual Report. I continue to draw strength every day from the caring people on this site. Thank you. With my bery best wishes for some healing in the year ahead...Susie Q

Hello Korina I haven't posted for months but have been on site just about every day. No energy to write but everyone's words continue to help. This too, is my second Christmas coming up without my husband and I feel so much worse than last year. Teary and upset every minute I'm alone.I arranged to finish work this week before Christmas because I could feel the tension buidling. I think last year I was very numb to it all (but I still thought it was an horrendous time) but stark reality is so much worse. The only positive is I know that I will get through it - I just want all this 'happy merry' stuff to go away quickly, or at least leave me alone. Well meaning family and friends want to include me in everything and I do participate but it comes at such a great cost to me emotionally - which they don't see Sixteen months on and I just don't see any end in sight to this long term torture of missing him so very much. I can see that I am getting better at managing my grief but I don't feel like the pain will ever lessen. I'm pleased you have had a little sign that makes you feel close to Scott. Those moments help. With my best wishes to you and the baby and to all sharing this heartache...Susie Q

Dear M I'm not all that great on thinking positively anymore. It's one of the many losses I face since my wonderful husband of 32 years died suddenly 13 mths ago . I've now been through both our birthdays, Christmas, new years eve and our wedding anniversary. I thought Christmas was going to be the worst but it was actually NYE because I hadn't given it any thought. It was horrendous for me and a disaster for my friends - we ended up coming home and watching the midnight fireworks on TV. I didn't want to 'celebrate' but they didn't want me to be alone either. What I have resolved since then is that because I miss him so deeply every minute of every day, these 'special days' can't be any worse. I try not to make them in my mind to be days to dread. I recognise their significance but have been able to say to myself that I'm going to miss him the same, whether the day has a special name or not. I welcome the thoughts and actions of others in the lead up and on those days, and like all the others, I wish he was here to share it. I do recognise them as important but it's helped me enormously to change the way I perceive those days approaching and just not expecting (or letting) them be any worse has sort of kept me more balanced. I'm learning that getting through this nightmare in one piece emotionally is going to involve changing the way I think - because I can't bring him back... oh, if only! Best wishes...Susie Q

I'm also alone at night. Missing him dreadfully but absolutely not looking for others to be here. I'm out a lot to fill in the time and while I hate the coming home alone part it's still my preference. Before he died, if he was away I would react to every strange noise, be afraid and worry. Now, I figure the worst that could possibly happen to me, has already happened. So, I have no problems being here in this big home by myself...Suzie Q

Hello - it's been a while since my last post but I've been here every day reading. Melina, it's been 13 months since my wonderful husband died suddenly. I'm struggling along but often have the kind of hours/days you describe. The fog is awful, but reality, when it comes into sharp focus is no fun either. I've learned to let the deep, raw tears and 'hysteria' come. I feel like I need them regularly, usually when I'm at breaking point on the inside from the pressure and will power needed to maintain 'the show' on the outside for others. I almost welcome the really bad times now because I know that eventually I'll sleep, and strangely, I wake up with a bit more inner strength to be able to try again. Tears are said to release powerful chemicals in the body. I'm coming to accept that the nasties are probably always going to be lurking just around the corner. The quick tears spill over lots of times every day but when I'm starting to really spiral downwards I just say to myself 'bring it on'. I don't have the energy to fight the anxiety and panic attacks anymore so I plan a night at home alone to let them have their way. It sounds morbid, I know and this is the only place that I would say it because people here really understand the depth of loss I'm experiencing. These awful crying nights are just as bad as they were Day 1 - don't get me wrong but somehow I feel that I'm a little more in control of when I have my meltdowns. Try givng yourself permission to feel rotten - coping all the time is extremely overrated if you ask me. I hate this life without him, but I know what he would want for me and that gives me some strength to keep trying. I wish you some comfort, some days on this heartbreaking road....Suzie Q

Dear Wendy I know the feeling of not being able to believe it. It is too much to take in so our mind refuses to - for a while. It's close on a year now since I lost my husband suddenly to a cerebral haemmorhage, gone in a few days despite no previous medical problems. It was six months before I could even begin to really comprehend what had happened but I am starting to have small patches of time when I feel OK and can share a laugh or a happy event - like the pain of missing is out of my mind briefly. The downside is that when I remember (usually a few minutes later) I feel that striking stab in my heart and the familiar chorus in my head of 'it can't be true' comes back. I think it's my mind trying to adjust to the enormity of a life without him - it's going to take forever so I don't expect the pain or sadness to go away quickly. The most helpful thing a counsellor said to me was 'How will you live with the pain if it never goes away". She led me through thinking that I might have to accept the pain and learn to control it in my own way. I am starting to do that because I truly believe it will always be with me in some form. We had no choices and I am not going through your agony of wondering if the medical path you chose was the best one. Going over and over it in your head may be a necessary part of your mind moving you to a place where you can accept that you did what you thought was right at the time - and that's all any of us can do. I wish you some comfort on this long, lonely and hard road. It doesn't get better - it just gets a little easier to manage.

Dear Marion Claire It's nearly 12 months since I lost my wonderful husband of 32 years. A year from hell. I can function OK but remain so very, very sad and I guess I always will. I have really bad nights when all I do is curl up in bed and cry, or go through photos alone and have huge breakdowns. I know now that my mind and body need that, and afterwards I still feel awful and drained but I seem to have some more strength to start again the next day. I think you should let yourself feel all the emotion you have to keep bottled up - it's such an effort to act 'normal' and eventually that emotion has to go somewhere. I choose to do that alone and not in the shopping centre like in the earlier months. I've given up saying "I should feel better by now" or 'It's time I got over this" etc. With acceptance of this horrible situation comes a little bit of peace. That happened slowly for me and it took about eight months before I felt strong enough to even start to believe I might just be able to get through this. Those glimmers of the return of inner strength and resilience brought a sense of relief. That's how I think it gets better - the hurt doesn't get less nor the missing of your life together/longing to see his smile/the absence of feeling safe and loved, but the ability to better manage the pain does improve. And any small relief at any hour of the day from feeling that hole in your heart is a blessing. Take care...Susie Q

I find setting the table and eating alone one of the most soul destroying things I can do - recipe for emotional disaster not a nice meal. It just reminds me how much I miss laughing together, our fun talks about anything and everything, catching up on our day apart, planning the week ahead etc etc etc. We both loved to cook so all that could happen over a nice meal. Now I'm an expert in bowl food. Something quick like stir fry taht I can eat anywhere so as to avoid the lonely placemat for one syndrome. It's a coping mechanism that I've developed...Susie Q

Dear Suzanne In two weeks it will be a year since I lost my husband - no warning. I understand everything you say and feel. At six months I still wasn't back at work and would long for the end of the day when caring family and friends would leave or I could go home and be alone - still miserable but only 'with him'. It's still like that but I am able to put on a 'face' in public and be close to normal. Nothing has changed inside but I have learned to bear the pain in a different way. I've managed to move it from overwhelming me to putting myself in charge of it. I'm still miserable, but in my own time and place. I couldn't see that things would improve either but I just tried to keep going. Went to things but stayed for a short time. Did what we used to love to do but only when I wanted to and felt strong enough. Each time makes the next time easier. I can't say I have or will ever feel again the joy in my heart that I had every ordinary during our life together. I guess what I have done is adjust to not expecting to feel that way again - and accepting that has made this awful road a little easier. I took heart from people on this site that told me the unbearable pain would abate sooner or later. I wish you some comfort as you continue to fight through this nightmare...Susie Q

Marion Claire I am so sorry that you have to bear this pain of losing these two important people in your life in such a short time. I know from experience that every day is a huge struggle and I hope that some time soon the burden will feel a little lighter for you. I see small glimmers of that possibility from time to time for me and then it vanishes. I am holding onto the hope that there will be a future when I can wake up in the morning feeling sure I can survive the day. I hope that for you too. My thoughts are with you ....Susie Q

Dear Sunstreet I am often comforted by the old saying "Great love, great loss". In a few simple words it puts into perspective how awful I feel and gives my enormous sorrow, and its depth and length, some reason (as if I needed to justify it, but sometimes I feel that pressure even being applied on me by me!). I know I am trying hard to go on without him, as Nat suggests, but it will have to be at my pace and if I feel down and teary, then so be it. I feel most vulnerable when the things I relied on him for are facing me. It can be something minor like the tap coming off in the shower yesterday, and it would certainly be a major health issue like yours. How your partner died is irrelevant to everyone here. Her pain must have been so great that at that time she couldn't see a way through it. That doesn't mean you weren't there to provide support or you wouldn't have kept trying. People here know what loss of someone truly loved means - try to find people in your real world that have a similar depth of understanding for what you are feeling. They do exist and are often the ones that say the least. My hope is that you will find some comfort ahead ....Susie Q

Dear All I wanted to tell you that going to the Remembrance Ceremony in honour of organ donors was one of the most uplifting things I've experienced since this nightmare happened. Although we had a wonderful memorial service for my husband and through the shock I took in and can remember every word, I was 'at' this function in an emotional sense. Afterwards it gave me a feeling of being able to release just a little pain that I haven't felt before. I listened to recipients and health professionals speak of the changes they have experienced and witnessed in peoples' lives because of a transplant. I heard a twenty year old read a poem she had written thanking an anonymous donor and family for giving her the priceless gift of twelve more years with her dad that had let him see her grow into a young woman. I saw the emotions of thanks and empathy on the faces of those wearing a green ribbon (recipients and their families) and heard their words of praise for the people who, even in death, had changed their lives. I saw, heard and felt the pain of those of us wearing a white ribbon (donor families)at the loss of someone so dear. I didn't really want to go but I am so pleased that I listened to the advice of close friends who went with me. It doesn't take away my enormous loss or despair but it helps to know that everyday there are eight people and hundreds of their family and friends that think of him in some way - and that he continues to make a positive impact on people - as he always did. I'm glad I knew of his strong feelings and wishes about this topic because it made that dreadful time just that much easier to deal with. I am so very proud of him and all that he stood for. Organ donation is a personal choice but, as the advertisement says it is important to DISCOVER - DECIDE - DISCUSS

Dear Joe This is probably the hardest road to travel because even when surrounded by caring people you feel so alone. It's hard to believe that it's been only 10 months since I lost my husband because every day and every night feels so long. In the first few weeks, and then months, all I was able to do was the mimimum to function - but I knew he would want me to keep trying. I got up and did the necessary things to keep moving, I did not go back to work for 5 months but I tried to go out somewhere every day. I never slept much (and still can't) but I sat and stared at the walls when I needed to and I cried when I needed that. Your mind is struggling with the enormity of what has happened so your disorientation and despair are all part of that process of making some sense of what it means for you now. I'm back at work and doing some of the things that filled our lives together. There's no joy in them and my life is a sad and hollow version of what it was before but I am a bit better. I cry just as much but can keep it inside until I'm alone - I miss him just as much as the day it happened without warbning but it's a part of me now - I guess I'm just not so much 'on show' as I was before. I didn't think I could survive through all the emotional traumas that I was experiencing after such an incredible personal loss. I think what has changed for me is that I have redefined what 'survive' means and lessened my expectations. I don't look for that feeling of complete happiness that I always felt before - more I look for some small positives from my day and try to listen to what he would be telling me about getting through this. I didn't see my life being like this - but it is. I guess it's up to me to somehow find a way to make it bearable. I'm still trying. Time doesn't heal, for me, it is just getting me to a more manageable place. I wish you some comfort in these horrible early days and the long nights ahead....Susie Q

Hello Everyone I've been here lots over the past few weeks and the site continues to help me greatly but I just haven't been able to contribute. Some pretty heavy emotions running wild at the moment. I've been missing him so very much and just keeping it all together at work each day is such an effort that the night in my fortress brings tears and sadness, TV in bed and hopefully, eventually some sleep. I feel like I'm turning into Jekyll and Hyde - OK during the day and a mess at night. Maybe that's progress from being a mess all the time. Also had one of Marty's STUGs (sudden, temporary upsurges of grief) in the shopping centre food court last weekend when I sat down alone to eat. And I'd had a good afternoon buying some nice things for myself given the skinnier me emerging! Some kind attention from a caring young mum helped. I know it comes down to today's Remembrance and Reflection Ceremony organised by Donate Life for organ donor families and recipients and their families. I feel I need to take part in something that honours him for his commitment to helping others even in death. Thankfully I will have some close company, but I think this service has been on my mind so much that it's responsible for all the extra tears this week - if it's possible to cry any more than usual. As you have taught me, the dread at attending functions is sometimes harder than the actual event. I guess that's correct in this case too because I seem to have found some strength today to see it through. I look forward to sharing how it goes - I'm hoping that although it will be a sad day it will be uplifting to see the incredible benefit that he and others have brought to strangers. He was an amazing man and I continue to be so very proud of him through all my sorrow...Susie Q

Dear Suzanne It's impoprtant that you can speak frankly and truly to your doctor. Any doctor with a degree of skill will understand that it is a fairly normal reaction to feel the way you do but if you are worried about how you might be interpreted you could try using different words. I always feel the way you do too - I didn't choose to be here to live my life this way and in the bad times I want to scream it out, but I learned early on that speakly honestly to people often scares them, upsets them or makes them uncomfortable. Mainly because they care about me. What I tend to say now however to close and caring people is things like "I don't see any meaning in my life anymore" or "I'm struggling to find a way to go on without him here with me". It's not as confronting because it implies you are trying and that's all they want to hear to know you are as OK as anyone could expect. You don't need to add the worry of what your doctor would do to your burden at this time. I think most doctors would understand your despair, and honestly they'd probably be more worried if you were out on the town every night...Susie Q .

Dear Billw You feel the way you feel. That's all you can do when you are trying to just keep getting yourself up in the morning. No reason or rationale that anyone givesto me will ever be acceptable for having lost the one that made my life what it was. I know that him going is just the way it is, so trying to work out or explain why this happened is not helpful for me. I protest it every minute but I know I can't change it. But it's OK to feel anger and emptiness - why wouldn't we? I've learned over the last 9 months that acceptance is the hardest state to achieve - accepting his loss, accepting some form of a 'greatly less than' life, accepting the pain and despair until better hours appear, accepting going out to family events without him, accepting an empty house etc etc I'm more able to manage these things than in the preceding months but still a long way from accepting them. I do believe that acceptance is the key. I feel that when I meet people who are surviving this nightmare in a real sense (not just existing like I am now)they seem to have integrated the past into their future and have come to terms with it. I look forward to a day like that. With all my best wishes to you at this horrible time...Susie Q I just want the past now

Dear Ipswitch I truly understand your feelings. I'm glad I knew his wishes and that I had the inner strength to follow through on them when confronted with this situation with absolutely no warning. I know that eight families have had nine months of joy because of him - I am truly happy for them, and proud of him in death as I always was in life, but it really doesn't bring me any comfort nine months later. I thought it would. Today is our wedding anniversary. I've been back to feeling the physical agony of his loss from my life all day today. Hoping that tomorrow brings some relief from it. Don't know how I survived the first five months feeling like this 24/7....Susie Q

Just going back to things and having the courage to do the things that our partner always did for us, or with us, is so important to re-entering the world. It's not a world I asked for but I take some comfort from knowing that he would be proud of me for just trying. So well done all of us. It's a very hard road and progress is slow but on my good days I can see a little glimmer of hope that I can hold him so very close to me, but somehow go on.