Do you ever get sick of the responsibility?

[Saggarmakersbottomknocker]

I don't post much here but need to offload. Feel free to ignore, slap me or tell me to get a grip.

I'm just fed up of being the decision-maker, the person the buck stops with, the one carrying the emotional burden. I'm not sure why I feel like this today (well it's got a lot to do with the feckin DLA renewal form staring at me from the corner of the desk) I just do and I've been awake half the night thinking about it.

I absolutely know that there are people out there with much, much worse issues than us. How you cope with a severely disabled child, or a non verbal, noncommunicative child is beyond me. And even as I type I'm remembering that it's the 13th anniversary of my friend's ds's death next week. Her reality and mine - there's just no comparison really is there? I do need a slap.

It's the day to day grind I'm struggling with at the moment. dd is unwell, not dash off to the hossie unwell - that would be easier in some ways - but a slow decline, no definite cause. I think I'm just worn out with the low-level worry you know? She's pretty hacked off too, worried about her own health and asking questions I can't answer.

I wish I could afford to tear up this form take her by the hand and run away.

[dustystar]

I hate filling out the DLA stuff - its so depressing having to focus on the negatives when you spend the rest of the time trying to focus on the positives.

Don't feel bad about other people having 'bigger' problems. You are still entitled to feel fed up with what you have to cope with. The constant low level stuff is really wearing.

[onlyjoking9329]

Don't think other people have a harder time than you do, i guess everyones "normal" is different, i don't know anyone whos version of "normal is the same as mine, the responsibiliy of it all gets to me too, i suffer from responsibility fatigue, i think i probably have an overactive responsiblity/guilt gland, i wonder if there is an treatment ?
DLA forms are awful i have done at least a dozen for my three but i don't need to do anymore until they are 16, on the other hand i have have to do one for DH, aaaarrrggghhh.

[gess]

And I don;t know how you cope with illness and hospitals..... We had this discussion in school, the mums of the very ill children saying they didn't know how we coped and vice versa. I guess you get used to your own situation iykwim.

But yes agree about the responsibility- have been ignoring requests for direct payment monitoring and now I'm in the shit, have mobility car to renew, DLA to renew, and we are broke so I'm up until midnight each night trying to earn money. It's bloody hopeless.

[Graciefer]

I totally know what you mean, just had Ds's annual review at school and left feeling a bit down and inadequate.

The constant grind of responibility and the feeling of our family being isolated from the rest of society does become wearing.

Although we always try to remain positive, once every few months everything seems to go wrong and it begins to feel like the world is ganging up on you and you alone. Although the rational person inside you knows there are people a lot worse off and that we should be grateful in what we have, it isn't always as easy as that.

I have come to the conclusion that although myself and DH rely and support each other through these times, that perhaps we should look for some sort of wider help with this and perhaps sharing this responsibility or at least getting advice on handling it better may reduce these 'downtimes', however a small part of me thinks that approaching social services for this is just going to open up a whole new world of stress for us.

This is why mumsnet can be such a comfort to me, as it is nice to know you are not alone in this feelings.

[gess]

Graciefer- despite my total fuck up with them, SS here is very good with direct payments, and having ds at MF should aid in getting a decent amount. Have a look at my website for ways we spend them

Did you go to donkey man? I completely forgot about our front room redecoration so missed it!

[Saggarmakersbottomknocker]

Thank you. I knew you'd understand.

Onlyjoking - I definitely have an overactive responsibility gland. Let me know if you find a cure.

[sphil]

I love 'over-active responsibility gland'. Had been wondering what my dx was! However, the awful truth of it is - I AM responsible. If I don't do the phoning, the reading, the researching, the home programme, the constant interaction, then DS2 won't make progress. That's how I feel anyway and tbh I've sometimes felt recently like chucking it all in and just walking out of the door. I won't of course - the gland will see to that - but sometimes it all feels too bloody hard.
So thanks Saggarmakers - it's nice to know I'm not alone.

[onlyjoking9329]

wine is the only cure i know, sadly the local supermarket could not supply for my demand
so now we make our own, it is much easier to lose track of how much you drink when you pour it from a barrel

[delllie]

Know exactly where you are coming from, sometimes it can seem so overwhelming.
I keep having this reoccuring dream/nightmare that I haven't given DD her medicines for days and I wake up in a real panic, heart racing and everything, thinking that I have brought harm to her, then feeling overwhelming releif when I realise it was just a dream