Feeling very sad and selfish

[ABird]

There seems to be lots of threads at the moment about feeling sad. Perhaps it's the time of the year?

I am a regular, but have namechanged for this as someone I know has tracked me down onto here and I feel really uncomfortable with her knowing the amount of personal information I am probably about to share.

My DH has a very serious illness. We have two little DC. Most of the time I get on with our lives, making sure the DC are ok and doing everything I can to make sure they have everything they need, are kept stimulated, etc. I also do all that I can for DH to make sure he is as comfortable as he can be.

But it's so fucking hard. Harder than I ever thought would be. DH and I no longer have a sex life because of his illness. I don't know if this is going to be a permanent thing or if maybe we could get some help. He doesn't appear to be too concerned about it at the moment. And I can't blame him! He is very ill, that's the last thing he probably feels like. And I am such a selfish bitch for even thinking about it. But I feel so sad about it. It used to be a big part of our lives, but it has now gone. As has most other forms of intimacy. We give each other the odd hug, but that's it really.

I am really struggling getting through the day with the DC. I feel there is no let up for me. I do have a little bit of help at home, and in the main I love looking after the DC (whom I adore), but the grind of it gets me down sometimes, especially in the everning time when it seems to go on and on - DH used to always do bathtimes, but is no longer able to.

See, what a bitch. DH is likely to die in the next few years. There, I have said it (I never dare to even think that most of the time). I love him so much, the DC love him so much. And I know I'm going to lose him. I just cannot bear the thought. And at the same time, I am being a selfish cow worrying that I'm not getting any.

Sat here in tears now. What the fuck am I going to do? What a mess. Why does it have to be like this? I don't even know why I'm posting other than to offload. Sorry.

I have nothing to say that would be helpful but just wanted to offer you a

What a horrible situation for you - no wonder you're so sad, and angry too.

I think your frustration at lack of intimacy is just the way your feelings of terror and early grief are coming out. Don't feel bad about yourself for it.

Is there any other way DH could take the pressure off you a bit with DCs? I'm thinking reading them a story or something that won't take much effort for him, but will occupy them? Maybe read to one while you bath the other?

When the DCs are in bed, could you maybe just snuggle up with DH in front of the TV or something, so you get the closeness but without the need to make it any more than that?

I'm sure that when the initial shock wears off and you get a bit more used to the situation, you'll find a way to cope and make the most of the time you've got left.

I'm truly sorry for you all, it's a heartbreaking story. Please keep posting here and let me know how things are going.

There are support forums for most life limiting and serious conditions, at least if you are talking to people who understand just what you are feeling and how hard it is to be a carer for your partner, you might feel a little better.

Just remember that you have needs too, don't be afraid to ask for help or to get away and have a little time for yourself.

I think you need to talk to your husband about the lack of intimacy in your relationship too, there could well be a way to enable you both to have a sex life, even if it's not a traditional one.

I'm so sorry you are feeling so down.

And when you are the one carrying the whole of the burden - the kids, the worry, being a carer, a mother, a wife...no wonder you are sad.

My dh also has a serious illness which has not caused him too problems so far, but I have lived the last 15 years with him expecting him to get sick and die. For a long time I felt selfish because I quite often feel resentful that I'm the one who has to be strong, I'm the one who has to tiptoe around him and make sure he's comfortable and looked after.

But recently I've realised that I don't have to be that person all the time. I need to look after me too. My situation isn't like yours in that he is not physically sick at the moment. But I've stopped living like death is just around the corner. It has made our relationship much stronger as he doesn't want me to be the martyr, the 'strong' one..it's okay to be sad and weak sometimes and to admit that it's all too much.

Mal is right - are there any support groups for the carers of people with your dh's illness. Also you do need to talk to him and find a way of being intimate even if it's only kisses and cuddles - it can only help him too by giving him physical touch and comfort.

Thank you all for your kind words and advice, and also to you Iwasthefourthwiseman for the hug - it was very much needed.

Re-reading my post made me realise just how selfish I am - it is all me, me, me. I try my best not to feel like that and I think probably succeed most of the time. I have a huge fear of 2 very little children (one is a few months old) growing up without their Daddy. I have a huge fear of DH's illness getting worse (it will) and of him being in extreme pain. He's one of the good guys. It's just not bloody fair.

I will get an appointment with my GP this week and see if I can talk to someone about my feelings. I also lost someone very close to me earlier in the year and both things seem to make the other worse, iyswim.

You're not a bitch or selfish or anything - you're human, that's all, and you sound exhausted and quite reasonably stressed and life must be shit. And of course you're going to miss a sex life - it's the loss of intimacy, and that's very important.

Would you feel better if the practical stuff was sorted? Wills, memory boxes for the DCs, letters/videos for the DCs, that sort of stuff? Or are you not at the stage where you can acknowledge it with each other? It must all seem so overwhelming - I'm very sorry.

You're not selfish. You're trying to get your head around a huge, horrible situation. And you would ordinarily, I guess?, turn to your DH to help make it better. But in this situation you/he can't. Of course you miss the intimacy and affection. I certainly don't think you're selfish. Please do go to your GP and try and get some support for you both. No one could be expected to cope with such a sad and painful situation on their own, as well as trying to keep things normal for the DC. Hang in there ABird x

ABird - you are not being selfish - you need to take care of you as well. It IS very hard for you to deal with all this, it would be for anyone.

Do find a support group - here is a list of websites you can look at when you feel like it.

It is fully acknowledged how hard things are for carers and loved ones of people with serious illnesses, please be kind to yourself about your situation, it IS fucking hard. And unfair and all the rest. And you need an outlet - that's not being selfish, that's self-preservation.

(((hugs))) to you and your family - I hope you get lots of them in RL too.

Thank you x

Abird - you're not being selfish! You are just frightened, and that makes you react differently to how you would normally. You can't expect to be stong all the time, or you will burn yourself out and be no use to anyone. You need to be kind to yourself and take some time out to deal with your own feelings and fears.

It's also OK to be angry with the situation - it seems to be that it is always the good guys that crap happens to. It might help you to feel a bit more empowered if you get as much information and support as you can about his condition so you know what you are facing and are prepared to deal with it when it happens, but in the meantime don't let it beat you - it's bad enoough that it's happening anyway, without destroying you now.

Have you got family close who can help out?

I'm really sorry to hear that you have already lost someone this year - it must be bringing up all those painful memories again.

You aren't a bitch, not at all. Life is throwing you some really heavy challenges right now and you have every right to feel sad. Ibreally hope somehow things improve for you soon.

I really hope that someone in rl comes to your rescue in some way. I hope that someone can scoop you up in their arms in all of this and let you know you aren't alone. I hope that you and your dh find a way through this and can travel through this dark time holding each other closer.
I hope that practical things ease up for a while and that you are able to prioritise and see the things that are important and those that you can let pass.
I hope that you find that strength in you that is not a trying strength but one that you didn't realise you had until you look back and wonder "how?"
May you feel how you feel and would that be enough.
Listen to the little voice that tells you to open up, ask for help or accept help.
You are a good woman.

Thank you again for your replies, so thoughtful and helpful.

Sirus, yours is a very interesting post to me. I do have a lady who comes in and helps a couple of times a week (all family live far away - they help as much as they can). This lady came to us through quite an extraordinary set of circumstances. And I know she is the 'little voice' of which you speak. I know me saying this probably sounds odd. But I need DH to be happy for her to know his illness (she probably already does, but for us to tell her) and from then onwards I know all of us will benefit from her incredible strength.

Thumb, your link is very useful too.

It has been several months since diagnosis and I think I am still trying to process it all - and grieve at the same time. Grieve for the life that we once had Now (or the New Year, let's get Christmas out of the way) is the time to crack on with the practical, financial and emotional help.

I'm so glad there's someone to help. Yes, getting through the next few weeks before you start with the practicalities makes a lot of sense - and of course you'll need time to adjust. Huge amounts of time. Just please don't beat yourself up - however you're feeling, it's justified. You have quite enough to deal with without giving yourself a hard time as well.

Hi Abird - how are you feeling today?

I'm glad there's someone near you who will give you strength - take what she has to offer, and don't feel bad if you're not giving anything back to start off with, just knowing she's helping you might be all she wants in return.

Whereabouts in the country are you? Maybe there are some MNers nearby who could chip in and help from time to time?

Thanks Hassled, and thanks for checking in Vanilla.

I have been slightly better today - been out Christmas shopping with friends and our DC for most of the day so have had little time to think about things too deeply.

I did make time to make an appt to see my GP tomorrow though. I'm not quite sure what I'm going to say. Other than I am struggling with my emotions and need some help, I think. Any ideas on what GPs can do in terms of support?

I do know I am grieving at the moment, for our lost old relationship. For my darling, darling husband and how he is now compared to a year ago. For my DC's father who they adore, who can no longer chuck them up in the air and play with them. I haven't given myself time to grieve the person I lost a few months ago either.

I know I am going to lose DH, sooner or later, and the thought is just unbearable.

ABird you sound incredibly selfLESS. Which is very draining.
You NEED to be able to have some down time of your own. You cannot possibly tend to everyone else's needs all of the time .

I'm glad you're going to talk to the GP - best thing is just to be honest and tell him how you are feeling. GP can refer you for counselling, CBT, or at least let you know about support groups that could help.

You are grieving for all sorts of things at the moment - your earlier loss, your relationship as it was, your future that won't be what you thought it would, your present that is hard, and the knowledge of what you and your DCs are going to have to face as well as what your DDH is going to have to go through. All in all, it's truly awful, and as I said before I am deeply sorry for you all.

I agree with previous posters that it would be a good idea to organise practical stuff to do before it's too late - memory boxes your DH can do for the DCs and for you, sorting out financial stuff and all the other boring bits, making plans for how you are going to cope with childcare, work etc, and I know you have said you're intending to do this in the New Year. I know it's far easier said than done, but if you really try to make this Christmas as fab as you can and make sure you do some fun things while DH can still get out and about so you create as many good memories as you can and really live for the day, you won't feel that you've wasted time fretting and worrying about the odd bad day. No-one will blame you for feeling down or feeling sorry for yourself when it all gets too much, but that's what we are here for. We won't judge you when you feel angry or down, or want to let off steam about what a bitch life can be. We're here for you whenever you need us.

Again, thank you both for your kind comments.

Vanilla, I feel sick to the stomach when thinking about memory boxes, etc (wills are all sorted and have been for ages, before his diagnosis). It just makes things seem so definite. I guess this is one of the things I can start to process when/if I find someone I can offload to. I know we will have to face this at some point. How shit is that? I have read so many sad threads on here in the past about bereavement. And now it is us who are faced with this terrible, awful situation.

We are determined to have a great Christmas. DH is resting as much as he can at the moment, probably in readiness for it. He has good days and bad, but his treatment is not curative, as the cancer had spread too far prior to diagnosis.

It's so fucking unfair (yeah!) that this has happened to such an amazing man. He is a good, good person. He is (thankfully) so strong, mentally. He was so strong physically but the cancer has stripped him of that. He won't die tomorrow, next week or perhaps not next year from it. But the bastard will get him. I see his neck - you can see the bulge where it's got into his lymph nodes. My poor darling. It's just devastating. My poor children. They must get to know how wonderful their Daddy is.

I do have another thread running, but someone deeply unpleasant, who really only wants to cause me harm, tracked me down on here (why? she's not even a parent) which really made me reticent to post too much on that thread. So many people helped me there, from the first awful days of his diagnosis to now.

Thank you xxx

I think, perhaps, you may have wanted to start a thread because you needed to see yourself say "DH is likely to die in the next few years". The enormity of that thought - the opposite of all the thoughts we have when we plan for our future - takes quite a bit of handling. You have done very well to begin facing the truths of your situation - and you sound a long, long way from selfish! Of course you're sad.

I'm not going to write how much I feel for you, although of course I do. I'd like to encourage you in your "trust that things will come" as you need them, because I feel it's helpful to trust - and that your own emotional wisdom will bring those things to you. Nobody likes gaining emotional wisdom, but it's clear from your posts that you have it.

I'm wary of saying this next bit, but here goes. Losing someone you love to a long illness is a very special kind of trial, because your grieving starts while they're still with you. There's a harsh sort of tension to it: one that many people fail to understand. It can make you feel lonely. It also brings a special poignancy - more clarity to your love, and the depth that comes with the wisdom. There are a lot of things you can do to make the coming years count - some of your respondents have already mentioned them, like memory boxes and videos for the kids. There are counsellors who specialise in this, and most of them are brilliant. Ask your GP and see what turns up.

I'm sorry if my last paragraph was too much of a jolt - maybe you can sort of put it in the back of your mind for now? One other, vitally important, thing to remember is that you count, too! Life has not stopped; it's changed perspective. You still need kindnesses, treats, fun and quiet time. I wish I could come over and make you a big hot chocolate & tuck you on the sofa with a funny film!

Take care of yourself, you're a good person and the rest will follow. x

Sorry, I don't know your other thread - you have been in touch with the Macmillan Trust, haven't you?

Abird: something absolutely vital is that you get some time off. No one can keep up under unending 24/7 strain, and even if it's only an hour a week or so, there has to be something in your life that is just about you.
There is nothing wrong with the way you are feeling, it's perfectly understandable that you are sad, scared and resentful (of the circumstances).

Abird - I don't know how anybody could wish to do you harm when you're already suffering so much. If I could get my hands on them...

I can see that memory boxes etc just make it all seem more real, and final, but all I am saying is I don't want you to leave doing things like that until it's too late, and then regret it.

Let us know how things go with the GP, and if you ever want to offload to an independent complete stranger without posting it on a thread, feel free to send me a personal message.

Grace, DH has decided that he doesn't want Macmillian involvement, at least not just at the moment. It's his illness, so that decision is one I must respect and try to understand. I have been on the forum and tbh it scared me senseless. God, we have been living with this thing for 6 months or so and I still feel I can't face it all. I absolutely understand where you are coming from about the grieving process starting already. It seems odd to be grieving for somebody who is here. But I am. Please do not feel you have upset me with what you said: it did make perfect sense and was not out of turn at all.

SGB, agree 100% about time off. It's difficult when I am still b/f my 8 month old. But I am getting my haircut in a couple of days' and I am also going out for dinner with friends on Friday. I was going to drive, but I am now going to be cheeky and ask one of them to pick me up, so I can have a couple of glasses of wine and not worry. I do need though to make a regular date for myself to do something. Probably swimming. Will help with my weight too (have resorted to scoffing to comfort myself, not good).

Vanilla, I wouldn't want you to waste your time with this person. Once I would have flown at her if she had done this to me. Now I just can't be arsed! My DH has cancer. I have lost someone very close and very special. Life is too short to waste on her. I just feel really uncomfortable that she knows my usual posting name and I know it'll be like picking a scab for her - she just won't be able to help herself from snooping looking, checking to see whether or not I have said anything about her.

Anyhow. I saw my GP today and she was just beyond wonderful. She opened up her arms and hugged me while I sobbed my heart out. She's getting me an emergency appt with the surgery counsellor, who the GP says is very good. We'll take it from there.