I feel demoralised and overwhelmed.....again

[Livingtothefull]

I have posted previously under another name re my situation. My only DC (12y) is severely disabled. We have had a few upsets with DH family which are now contained if not resolved. I have suffered quite badly with depression/low self esteem issues the past year or two but am coming through this & had treatment. I also experienced bullying at work & had to leave in a hurry so found a contract role which lasts till next month. Things have lately been a little more settled.

Now, DS requires further major surgery which is scheduled at the very end of the work contract. So I won't be available for work while he convalesces though, on the plus side, at least I will be free to take care of him. But I NEED to work to keep the roof over our heads, am terrified I won't find something else. DC will deserve a wonderful Xmas and how will we pay for it?

I am studying for a PG qualification which is nearly completed...was scheduled to end January (already deferred through mitigation due to DC issues - no further deferment possible). I have to do some research within the next couple of weeks, how will I do this with all that is going on with DC? I am so worried about my poor boy.

My health has been pretty poor & I have piled on weight, have been addressing this lately by joining a gym, running when I can, doing fitness dvds at home, eating better etc. How will I do this while DC is convalescing? I know I will comfort eat and won't be able to leave the house or afford the gym. I also feel horribly guilty for working on myself like this when DC will never be able to even walk.

I don't know why I am posting here really...these issues can't be taken away but I need to somehow get though this and manage my life. I need to fight this feeling of fatalism....feeling that life/the universe etc has it in for me and will ensure that I don't succeed, that pressure will be piled onto my little family until we all break, and that I will remain on a step lower than everyone else.

On reflection I think I would prefer to pass on both the onwards and the upwards

Just to say that I think you're doing an amazing job - please stop being so hard on yourself.

And your friends most certainly have nothing to 'forgive'.
Where are they for you? Why aren't they rallying round doing all the practical things they can to relieve your day-to-day burdens?

Please - be kind to yourself; you deserve it.

Thanks NannyOgg, my friends (I hope not my ex friends) have to work and bring up their own DC. So they can't be there for me. I hope my Dsis will visit me at the weekend. I do the best job I know how to do - which is not quite the same as 'the best job I can'. Nothing could ever be good enough for my sweet darling DS.

What I mean is, I don't mean to be hard on myself but I feel that my DS deserves the very very best. And whatever I am, I am well short of the best. The fact that I am sitting here weeping and drinking wine is proof of that; this is not how a superior person (of the kind DS deserves) would behave. My poor DS with all he has to contend with, is saddled with this travesty of a 'D'M.

I will go to bed now and tomorrow will take care of my DS. This situation has just done for me; there are things involved in DS care which, out of respect for my DS dignity, I can't describe here; but I can't believe and I struggle to accept what my sweet boy has had/is having to go through. Nothing I have had to suffer is of any significance in comparison to this. I don't really know why I am ranting on here.

I am not going to make any grandiose threats about being at the end of my tether and what I might do as a consequence. For my DS sake I will do nothing. I will use the freedom rattling around in the mind/soul (periodically spilling over onto the page) to gather together the horribleness of life so that at least it is all in a bundle separate from me & I have a little sliver of space from it.

"I also feel horribly guilty for working on myself like this when DC will never be able to even walk." - Have you ever heard of ?

Living I'm so sorry your DS is going through all this and you and your DH.

Hang on in there, it will get better. PM me if you'd like a rl listening ear.

I know money is important but i'd put all other concerns aside this week and just focus on DS and yourself.

Hope your DH gives the GP effing HELL tomorrow. Who the feck do GPs think they are, if not the people responsible for the medical care of their patients?

Hope you and DS get a decent night's sleep. x

Thanks. I know that better times have to come & at the moment I just need to get on and do what I have to do. And feeling guilty about not sharing DS restrictions is pointless, yes my role is to support DS and fight his corner and anything that makes me more effective at that (such as being physically fit and well) is good.

DS seems a little more settled today, maybe his new painkillers are kicking in. I got the district nurse number in the end - GP gave us a new number but again it was the wrong one, it was the paediatric nursing team that we needed. They were meant to have had a referral from the GP but it turns out this had not been done....so I had to explain that he needed to be seen today regardless, as his dressings had not been changed for a week.

When the nurse came she had no info about what surgery DS had had so I showed her his discharge papers. Some of his dressings are changed and she is coming back on Monday to do the rest....so, no school for him (which means no jobhunting for me) at least till them. She confirmed what I already thought, that he is not fit yet to be back at school.

DH wants to have it out with the GP surgery but I want to keep them on side at least till this is all over.

So glad your DS is more settled. And that you are now on the district nurses' radar. Your DS is lucky to have such conscientious and capable parents.

Put the jobhunting aside for the weekend and try to relax, you sound like you need a bit of love and care yourself. Could you and DH spell each other for a morning/afternoon break?

I think you are wise not to have a full-on rant at GP at this juncture, but I can certainly understand your frustration. Their uselessness is the last thing you need. Perhaps have a one more strike policy?

Thanks bunchoffives for your message, I think that DH and I are doing what any decent parents would want to do given these circumstances. Yes the GP surgery have been disappointing...I am really aggravated by the fact that they claimed that DS care was 'nothing to do with them'; apparently (as has been explained to us) they hold the purse strings re DS which is why it all has to go via them. But I just don't have the energy at this time to pick a fight with them.

And yes I am planning to have a break at the weekend and give DH the same. I may even go out running!

Again I am just talking to myself but.....I had to wash DS this evening & do his leg exercises, it hurt him so he said that I am a fucking bitch, a fucking idiot and that I should fuck off. I love my sweet baby boy, I wish he didn't think that of me. I know that he is just lashing out, but am not sure he will ever understand why I have to hurt him.

So I have to go to bed now so I can care for my poor dear baby tomorrow.

Livingtothefull - one thing that has consistently shone out from your posts and in your previous incarnation, is the overwhelming love you have for your DS.

You sounds like a wonderful mother lioness - fighting to get the best for her cub( scuse the dreadful mental imagery). Your DS is lashing out because he is in pain and because he feels secure enough of your love to be able to do so, oh and because life is sometimes far from fair.

I hope you get the support you need for your DS and do go for a run - but only if it makes you feel better, not in a punitive I must go for a run way.

Thank you original for your kind words. Yes I adore DS and I am proud of us (me & DH) doing what we can to fight for him. I do think though that we are not exceptional, most parents posting here would do the same for their DC. We are just ordinary people dealing with an extremely challenging situation.

I know that DS is just lashing out...but he is usually such an affectionate little boy so it makes it harder.

Well I did go for a run...up a hill too! My back aches now but it was still good to do. Then I bought some food & a new shirt for DS. It felt good to be out & about again doing normal stuff.

I just want to say again, thanks so much to all who have posted here, it is appreciated more than I can say. Even if I have not specifically referred to your posts I can assure you that they have all been carefully read and reread. Plenty of great advice there and it has been heeded.

Today we got a phone call from DH family member whom he felt (with some good reason in my opinion) let down by. As it rang, DH said 'if it's (family member) I'm not here'. Didn't want to lie so i let it ring, sure enough it was this person who left a message asking about DS....not sure if the concern is genuine but am sick at heart that it might not be. I can't interfere.

I realised that I forgot Dniece birthday recently, feel really bad.

We are looking to get DS back to school tomorrow, he howled when I told him we didn't think he was fit to go back today. He goes to a special school with resident physiotherapist etc so they are well set up for his care.

The district nurse is coming today to check his dressings etc so hopefully we will get an all clear to send him.

My Dsis called last night to find out how DS was, I feel guilty now because I ranted to her about how I had no time for anyone's problems if they were not on a scale of DS's, that he had been through hell and some of those moaning & groaning to us about how bad they had it, needed to get a life....and that our DB did not know how lucky he was, having 2 happy healthy DC's.

I feel guilty about this last particularly...DB has had troubles in his life also, who knows maybe he thinks I could have been more proactive at the time in supporting him? He has also been in touch by phone/email to offer support so I think I have been much too hard.

Another family member who lives abroad, has been contacting by text, email etc asking for updates...evidently we have not been quick enough in getting back to them, we have just had a text from them insisting that they want to fly over here to 'help out'. I just don't want this, the last thing I want is a whole lot of drama. We are coping OK and don't need help, maybe not brilliantly but OK.

The first thing this person will want if they come over, is a lift from the airport from us.

I feel really crabby and bitter and am not proud of feeling this way. I just want to get back to normal and for DS to get back to being his usual happy self and to no longer being in pain.

Rant over....I don't expect anyone to have solutions to this, I just want to offload/have some handholding.

BTW family member who wants to come over is the same as the one in the last post(ie the one who called whom DH didn't want to talk to).

Why don't you email/text your Dsis to apologise for last night? She may not feel you need do to it, but it will stop you worrying.

Re the other family member, I would text or email them, thanking them profusely for their concern, but tell them that DS is due to go back to school tomorrow so they really don't need to come, but you really do appreciate their kind thoughts.

Lay it on about how busy you are at the minute with DS so you can't respond timeously to their contact, but you will contact them if there is any change in his condition.

That's good news that DS is almost ready to go back to school, fingers crossed he gets the all clear.

Oh and well done for your run btw - wish I could get going rather than stuffing myself with chocolate all the time.

Hi, yes I took your advice original & texted my Dsis and she sent a sweet message back so all fine... we have also put off other family member.

Tomorrow, hopefully, DS is back at school....I may then go running again then start the job hunt in earnest.

I also need to try to start thinking about my studies as I haven't been near them for weeks. I am sure my tutor has given up on me...need to email and explain why I haven't been in touch, have been putting offhand putting off as I have felt so bad. I hope that he does not consider it is too late for me. I have till end December to complete a 6k word project! Help!! I will regret it to the end of my days if I don't deliver on this (there goes the guilt feeling again....why is there so much of it washing around in my life? I do feel that all this guilt is counter productive....makes me less, not more, likely to deliver what is needed).

I still haven't got my act together re Dniece birthday present....nn to send a belated gift even if just a cheque. Hang your head, well and truly, in shame Living.....

I truly believe you should be receiving far more help than you currently do in respect to DLA. When was the last time your ds was assessed? and did you have anyone help you complete the paperwork.

If he is incontinent and attends special school I would imagine he has fairly significant additional needs. To put it into context dd2 has Cystic fibrosis she has treatments during the day and occasionally at night. She receives mid rate care (and because of that I can claim carers allowance).

Have you thought of contacting your local carers hub for more help and support?

If you were able to get DLA (at a level approriate for your sons needs) and CA would that help release the pressure slightly with the job hunt and allow you time to care?

I think that I am too hard on myself as NannyOgg has said upthread, that expecting this much is actually counterproductive. When I feel that whatever I do is not good enough, it makes me want to not bother at all....and I can't afford to feel that way. I need to be effective and I also want to feel reasonably OK about my life & what I am achieving, which in turn helps me be more effective.

How can I be kind to myself when I lead a life which makes no allowances for kindness...which makes a set of demands and does not care how I might feel about them? As I have tried to say previously, success is in the doing, in positive achievement not just in 'being', 'existing', 'inspiring', 'thinking good thoughts', 'meaning well'.

I need to care for my DS. I NEED to find a job to keep the roof over our heads. I need to study as if I fail I know I will regret it for ever. I need the wider family/friends circle to know I care. And I need to do it all now....prioritising doesn't come into it, I never get this time back.