To resist feeling guilty?

[LifeHope11]

I have posted before re my situation: DS severely disabled and recovering from major surgery,this coinciding with demanding new job, other demanding family circumstances.
DB arranged family get together some weeks ago, we said we would come if we could due to DS being in a lot of pain, limited mobility etc. DM is visiting DB so she would be there. She previously promised that if we could not go (on Sunday) she would come & see me Saturday to ensure we saw each other
After a lot of thought we decided to make the trip over to DB on Sunday...spoke to DM to tell her & she was insistent she could come tomorrow too. I said there was no need (she is q elderly) but she was insistent she wanted to come.

The thing is, I had made plan to go out by myself & have some time out, go shopping etc as we had childcare for DS -this is the first time in just ages I have had this time. DS has been & still is in horrific pain, he has been in a brace for weeks, his skin is scabby, his muscles wasted and his scars are a horrible sight. He is only 10. Seeing him like this has taken its toll on DH and me. To be honest I am worried that DM will be upset to see him, most of my family have not seen him since the op.
I rang back, spoke to DB and basically blew DM out - DB was a little cool to me as i explained, said, 'yes, she (DM) gathered you had other plans'. I think he thought I was unkind and that is how I feel too. I love DM dearly, she has done her best to support me emotionally and I would love to see more of her than I do. But right now I feel I have to have some time to myself. I don't think anyone who has not been here can possibly understand what we have been through and at present I do not want to talk about it length (family members will want updates etc). I am also having to deal with a demanding job, learning and gaining credibility, showing motivation etc.
DH is of the opinion that I need to put self first, that now is the time for the family to work around us not us around them etc. But I could hear the disappointment in DM's voice when it was obvious I did not want her. I hate hurting anyone especially her. I feel I am too close to this situation and don't know if I acted for the best.

If you explained it to her exactly how you explained above, then she should understand. You have been through a lot, a true parent would understand your needs at this time.

If you explained it to her exactly how you explained above, then she should understand. You have been through a lot, a true parent would understand your needs at this time.

Definately resist that urge

You've said you're trying to protect your mum from being distressed about your DS, as well as trying to protect yourself from having your head explode all over the kitchen.

It's OK to have some time for yourself, not that you need anyone elses approval or permission.

It's lovely they want to support you, and love you so much that they're upset at not being able to see you, but because you're in such an incredibly stressful postion you have to draw a line at some point as to how much you can actually manage before it starts to physically affect you.

Switch off and enjoy your day shopping, your family will still love you afterwards

well, i think you did.....however the trouble is...nothing is ever free.

Family needs to be able to tolerate this and to let you have space...can you take DM to one side and explain that you couldn't have coped with the sunday thing if you hadn't had some space...although she hasn't been in your situation she has been a mother and must recognise that feeling of being stretched beyond breaking.

However , all you can do is the best you can do . if people can't empathise or don't understand then you can't change their minds...just carry on and leave it behind you and make sure it doesn't lurk at the back of your relationships.

Sorry you are going through such tough times.

Thanks so much for your posts here (& also elsewhere which I read - in error I duplicated this thread originally). I think I agree with you that I should explain to DM when I see her that I needed space - though I think part of the problem is that I have really protected my family from the truly horrific nature of DS's situation.
AgentZ - it is quite true that I feel my head is going to explode, here I am up again until all hours as my head cannot settle. The enormity of our situation is mind-blowing. I think that part of the problem is that I have gone into 'heroic' mode where I grit my teeth and just deal with whatever life throws at me. This is all well and good but when one is in this mode it is difficult to recognise when enough is enough. Dealing with DS is a daily emotional penance. DM said once that these things are 'harder on the parents than the children' - I do not agree. Nothing can be harder than the ongoing agony I have seen DS go through. However, suffering is all relative and DH and I have undoubtably suffered at seeing DS go through this.
Here is my problem; telling DM all this, explaining that this is the reason why I need a break, will upset her more. She is in her 80s. It will also certainly put a damper on the happy family gathering planned. This is why I tend to keep quiet and restrict myself to mental implosions rather than explosions.

your poor little lad.

And you make total sense saying about how there's been a test of the capacity you have for shouldering the things you have to deal with daily.

Your body might have been able to carry on under such stress for a while, but it's just not feasible long term.

Only you know your mum and what you might expect if you told her the truth, could you make your excuses for the family gathering, but talk to your mum afterwards?

Would she want to know you're struggling and distressed?

AgentZigzag - thank you. I think that my DM would be wonderful if I told her the truth of what we have been through, however she would still suffer. I would not lightly have her suffer. Is the alternative - to chirpily assert 'Yes things are challenging but we are coping fine' - not better? Sometimes distress has to be buried deep in one's own heart as there is no other feasible place for it.

Lifehope, I think your DH is totally right and you need to trust him on this.

Your DB and DM will forgive you and anyway you will see them on Sunday. It sounds as though you need a day to yourself, what a lot you are managing to get through .

You not only have the right to act on it when you recognise you need some recovery space for yourself; you have a duty to do it. Your family don't need you having eg panic attacks/stomach problems/recurrent infections (stress related stuff) because you are trying to look after everyone but yourself. Please don't even think about how other people 'might feel' about not seeing you Saturday. It's not your business. Your business is looking after yourself so that you are healthy and able to cope with his rehab/recovery.

You sound like a lovely person and you will still be that (in fact probably nicer for being a bit more relaxed!) if you look after yourself

You'd be burying it for the best of reasons, but could you be overestimating the amount of worry it'd be for your mum?

I'm not saying she wouldn't worry about you, but, and I don't know if you have a similar relationship with your mum, sometimes only they know which angle to look at things from, that can make coping with what you have on your plate, a whole lot easier.

Or in other words, they sometimes just know how to make you feel better, and want to.

If you thought she would want to know, do you think you'd be able to let her in a bit?

And what Agent, Joruth and Basket said

I mean Bakehead (on Phone, bad memory for names!)

Bakeyouhappy! Sorry sleep time I think

you sound lovely.
You are very eloquent.
Just talk to your mum.
SOme situations can't be resolved without a little bit of hurt

Sometimes distress has to be buried deep in one's own heart as there is no other feasible place for it

IMO you're right in thinking that if we are stoical (otherwise known as uncomplaining or heroic) by nature, or because circumstance gives us little alternative, we have no choice but to bury our distress somewhere deep while we get on with what we have to do.

It can also be expedient for us to put on a brave face and spare others from the fine detail of what we are truly suffering/undergoing because it can be so time-consuming to tell them - and each time we tell others of the true reality of the situation, we have to re-live what we've been through, confront our fears all over again and, in some cases, open the floodgates to new ones.

Of course, the more we spare others, the more we take on ourselves until it can seem as if we're looking out for everyone but no-one is looking out for us - but that's an additional price we pay for holding, and keeping, ourselves together in face of adversity.

In your situation, you and dh need to grab every spare minute for yourselves; to recharge your batteries, to take time out, to be able to turn off and pretend/fantasise that your lives are 'normal', or do anything/everything you can to maintain your equilibrium so that your strength can be renewed ready to face the next challenge - which, in some cases, can simply be about getting through the next hour, day, or night.

It's unfortunate that your need and the opportunity to have some brief 'me' time has coincided with your dm's visit to db. When you see dm on Sunday, let her know how much you appreciated her offer to visit and how you would have loved to have had her over, but that this stage of ds's recovery you were concerned that you would not be able to have had the quality time with her that you wanted, and that you would have felt upset at being short-changed. Give her a big hug, tell her you love her, and that you know she'll understand - because she will.

Please be aware that at some point you are going to have to go to that deep place, dig up the distress, and let it go to a place where it can do no harm. In the meantime I wish your ds a speedy recovery, and I wish you and your dh well.

Thank you so much for your messages of support and sympathy. It really helped me in getting some critical distance from the situation and avoiding unnecessary and inappropriate feelings of guilt.

We went to DB's house today and saw DM who as anticipated was wonderful, she will be coming down again in approx 2 months (she lives about200 miles away) so I explained we were not really ourselves at the moment due to the aftermath of the op, but would be better again soon. She was very understanding.

I think this is the problem, I am not really myself or rather do not know who I am. I don't know how to deal with this situation though find myself coping with it. Every day I have to wash and dress DS, change his nappy (he is incontinent) and the pain of it makes him scream and swear at the top of his voice; some neighbours have even heard him and asked us if everything is Ok. His physical condition is also poor, his legs just bone, wasted muscles, covered with scars. Occasionally it sinks in just how much his situation has pained me and how twisted up I am inside. At DB's house my happy healthy nieces were running around, playing with & talking to the other happy healthy children there, of course DS cannot join in. This hurts me more than I even know.

Of course I am in a new job, I worry incessantly about this too. Here I am still up even though it is nearly midnight and I have work tomorrow, I don't want to go to bed, wake up and find it is tomorrow morning. I am having to make my mark at work and show I am competent, I am so scared of messing up. I feel like an awkward schoolgirl and forget how to act like a person who commands respect. This job is important to me in the longer term; but right now I feel I do not want to try and would rather be left alone.

You will guess that I am ranting here but there is nowhere else I can rant. I acted on advice previously given on MN, went to my GP who referred me to a counsellor as a priority.......just had a letter from the counsellor 'sorry she is completely booked up for the forseeable future, you may wish to source a counsellor elsewhere'. I suppose I could go back to the GP and ask for more help but I just can't be bothered. I am just so tired of every opportunity to better myself and improving my situation slamming shut, my life reverberates with the sound of doors slamming. There are worrying signs that my brain is wanting to shut down too, 'tit for tat' and certainly life is just so astonishingly hard that a part of me is tempted to give up. I won't though.

It sounds so hard, LifeHope, it is difficult even to offer words of comfort without sounding trite.

Just a thought: sometimes you do need to tell the truth just to ease the burden of dissembling and putting a brave face on things. It does also give your family a chance, not just to support you but to do so in the best way for you.

I say this because I have got a close relative whose spouse has a serious illness. We do all worry every time some specific episode arises that this is the beginning of the inevitable deterioration leading to premature death.

After many years and some frank conversations I have learned the best way to support her and it is often about having no expectations of her and just letting her be. I'm glad I know what she wants from me: not knowing didn't spare me suffering, I just worried more. I am happy that she knows I am there when she needs me, but am not offended when she doesn't want me around. It may be that your mother would find this easier too.

May I suggest contacting MIND for counselling?, I'm not sure whether it will apply in your area, but I have had a very good experience with them personally.
Best wishes

I am writing this to the accompaniment of DS screams as DS changes him, apologies if it is not very articulate.

Thanks...I will look into alternative sources for counselling & will investigate MIND. Do I need to be mentally I'll though to qualify? I don't want to take resources away from those who may need them more.

Other fears re counselling:

That it implies that my emotional state is the entity at fault; in reality I think it is our circumstances that are all wrong rather than my reaction to them;

That if I am too open with the counsellor (or indeed my GP) about how close to the edge again, he/she may misconstrue what I am saying, panic about DS wellbeing, involve circumstances and I could risk losing DS. I am worried to speak too openly for this reason.

sometimes it pays to have a little support before you break down completely!!!

it implies that my emotional state is the entity at fault; in reality I think it is our circumstances that are all wrong rather than my reaction to them

I completely understand that concern, but the thing is your reaction to the circumstances is the only thing you have the power to change. Since you and your DH are the mainstay of your son's care, caring for yourselves is an important part of caring for him. I think you need and deserve support-don't worry about labels like mental illness. The stress you are living under is almost intolerable-you absolutely deserve a helping hand.