Here some suggested organisations that offer expert advice on SN.

Desperately in need of a honk and a hug :(

(44 Posts)
moosemama Wed 21-Nov-12 20:16:23

That's about it really.

Ds is a mess, school was a disaster again today, they are still not doing remotely what they say they are and should be doing, are still doing things they most definitely shouldn't be doing and yet again have given his self-esteem a massive kick in the guts today. On top of that it's problem after problem with the TA they've assigned to him and he is too scared and totally refusing to tell anyone other than me how badly she's affecting him. sad

He came out of school today full of anger, frustration and despair and I know just how he feels.

My heart is breaking for my poor boy. I feel so worn down, like I can't even get up off the sofa. I just want to curl up and pretend it isn't happening, because I know I can't do anything about it all - nothing I try works - I am continually banging my head against a brick wall with all my exits blocked. sad BUT ignoring it isn't an option is it, I have to fight and stand up for him, because if I don't, who will?

Sat here in floods of tears, waiting for dh to finish bedtime routines so I can fill him in on today's disasters, but knowing that he won't fully get it even if I do. Marriage is falling apart as well at the moment and I no longer feel I know or can trust my dh, which is heartbreaking after 25 years together. sad

So sorry for the self-pitying post. I just needed to let it out somewhere.

madwomanintheattic Thu 22-Nov-12 20:47:37

Spend an hour on s&b and get them to produce you a shopping list. smile

Did you ever get that cleaner with his wage increase?

My dcs can manage to create a real life end of world scenario with three Lego bricks, depending on which one is due a meltdown. <sigh> so tough when you are all on edge and can't defuse stuff before it escalates.

<call the neuro> <- just a little whisper. Do you think the neuro would pay more attention if your mum or dh called and explained the most recent crisis? Especially in a 'I thought she was off her head and she couldn't speak or walk' type of way...

TheLightPassenger Thu 22-Nov-12 20:11:52

I'm sorry Dh is being an added source of stress. I would be inclined to give him benefit of doubt re:medication confusion (on the basis that I am merely mildly tireder than normal on 4 Piriton a day, whereas the rest of the world seems to be utterly non-functional) but sounds like the other stuff. well, you need more reassurance and TLC at the very least. I hope you manage to get some rest this weekend at the very least.

Badvocsanta Thu 22-Nov-12 18:24:04

Hi moose.
Have nothing of any use to say other than I am here and listening (hugs)
Wrt your health I can empathise as you know. Still no answers for me either and I have come it the conclusion that until I have some sort of major attack/crisis I will get no help. I am so sorry you are no further forward either. Changing your review to yearly is nonsensical to me, but the NHS are running our of money after all angry
Wrt your dh...sigh. It's hard to know what to say. I think I am the one having a Mid life crisis in my relationship! I am unhappy and have been for some time but Dhs standard response is that he is happy, so everything must be ok.
He is working away a lot now which in some ways is good, but of course with my health it's hard.
Wrt your ds...you are right, you have to keep fighting. What's the alternative? Good luck with the AR.
Honk x

PolterGoose Thu 22-Nov-12 11:39:42

Honk, flap and (((((hugs)))))

NoHaudinMaWheest Thu 22-Nov-12 11:21:04

Yes go for it!

moosemama Thu 22-Nov-12 11:17:25

Thanks NoHaudin. I'm fine with talking to myself - it's often my only option! grin

To be honest it's just helping to let the thoughts out of my head and stop them all spinning around in there.

I don't think I will go into town, as I will just stress about getting back in time and have just remembered I have an additional school run today because of cricket club, so need to conserve my energy a bit.

Might order something online for next day delivery instead - now that really is extravagant.

NoHaudinMaWheest Thu 22-Nov-12 11:11:22

Moose I'm just replying so that you don't feel you are talking to the ether.

I'm sorry it is so tough on so many fronts. Didn't know about your back story re head injury but when I was recovering from severe ME 20+ years ago there was a chap at the work preparation unit I attended who had had a head injury and had a lot of help from Headway. It seemed like they were there for the long term so might be worth contacting. But I know its another thing for you to do.

I don't think its daft to buy something for yourself if you can manage it. Why not go the whole hog and get a taxi into town?

I really ought to get back to sorting out stuff for Ds's AR next week. It's an important one as it will decide post-16 provision. I knew my paperwork was in a mess but I am just discovering how much of a mess.

moosemama Thu 22-Nov-12 10:42:50

I had forgotten we had that in common as well Madwoman.

I have never heard of Headway, I will look them up.

We had no help at the time. His treatment by the NHS was truly appalling, so there was no chance of them giving us any advice, we just had to muddle through on our own, with me nursing him without support. I was given compassionate leave, but then had to go back to work part time and try and hold down a job whilst nursing him and running the house etc. We were living the other end of the country to both families at the time and had very few 'real' friends up there as we were fairly new to the area. I hate thinking about that period in our life because it was truly awful. sad

I managed a couple of hours of fitful sleep, enough to be able to handle the school run.

I'm worrying about how ds1 is coping today. Apparently he refused to go with the TA yesterday morning and it sounds as if there was quite a battle. He can't stand being alone with her every morning and he loathes Thursdays anyway since the whole maths demotion thing. He still wants to go in, but only because of cricket club. Now Fridays are going to be a similar problem, because a good proportion of his literacy set are being taken out to be hothoused tutored by teachers from the secondary towards level 6 SATs. Of course that includes all his friends and he is left with the children he doesn't get on with during what is essentially the 'fun' part of Friday afternoon, where he usually works with his best friend. sad Of course this has tapped into his self-esteem issues as well as making Friday, yet another 'blacker than black' day. <sigh>

Bedtime last night was awful as well. Ds1 totally lost it with ds2, just because he said 'pardon me' when he broke wind. I was downstairs and it sounded like World War III had broken out up there. Poor ds2 was beside himself, in floods of tears. It was purely a verbal attack, but so bad that it left ds2 shaking. He went to dh, who was putting dd to bed, for help and asked if he could stay in their room with them for a few minutes and dh shouted at him and sent him back to his room. angry It was clear that the boys needed to put some space between them for a while, so ds1 could calm down and ds2 could recover, but as usual these days dh just wasn't invested in what was going on. Fortunately ds2 had the good sense to come downstairs to me - who daftly assumed that dh would have dealt with it, especially as I am not really able to dash up the stairs at the moment.

Then ds1 was an absolute nightmare this morning, which is pretty much to be expected. Poor ds2 caught out badly again. I've had a chat with him and explained that whilst we need to be sympathetic with ds1 because he is having a difficult time, I still won't stand for him upsetting or hurting people and that he should come to me if ds1's behaviour is distressing him and I will deal with it.

Today is odd, I am tired, flat and don't feel like doing anything, but at the same time bored witless from doing nothing. Have read some books with dd and she is now doing her own thing. Hence me being on here.

If it wasn't for this blooming foot I'd get on a bus and go into town when she goes to nursery, but there's not enough time to get there and back and hobble round the shops if I go on the bus. Very annoying, as if I am going away this weekend I quite fancy spending some of dh's money buying myself something I don't need, just so I've done something for myself. <daft I know>

madwomanintheattic Thu 22-Nov-12 01:57:44

Moose, there are a few of us on the brain injury thread in general health.

I know it seems like a long time ago (me too) but has he ever been in touch with Headway? I have to say I had never heard of them before the thread, but they do seem to have been quite useful for silent types...

I had forgotten that we had such a shared history!

Hope you manage some sleep x

moosemama Thu 22-Nov-12 01:40:17

Cross posted maria.

Thank you. You talk a lot of sense.

Part of me knows that dh has always been a reliable and faithful husband and father and therefore my faith in him has been justified, but somehow all this is making me feel like there must have been at least a part of him that I never knew at all and that makes me feel like a fool. Yet on another level I do know that realistically we all have parts of ourselves that we hold back, although I don't think I have with him, because, as I said earlier, we grew up together. We are both 42 and have been together since we were 16 years old - our whole adult lives have been shared and we've been through so much together and survived that for him to screw it all up over a midlife crisis seems ... well I can't even think of the right word for it, but I do know I am hurt, incredulous and angry about it all at the same time. I know things are tough and messed up at the moment, but I still want to know why, why this time, why now. The only thing I can come up with is the mid-life crisis, years stretching ahead of him type thing and him realising that he just can't face it.

I guess it's a reminder that you should never take anything for granted.

Anyway, I am going to try and get some sleep again now.

Thank you for your kind thoughts.

moosemama Thu 22-Nov-12 01:32:07

Can't sleep.

Coff, thank you. I'd like to think this weekend would be enough, but it doesn't feel that way at the moment.

Ellen, I've already been through him changing massively from when we first met. He had a head injury the year before ds1 was born and his personality changed overnight. He used to be lots of fun, very carefree and silly and really open and easy to communicate with. After the accident he stopped communicating, became obsessed with politics etc and really quite militant. He spent much of his recuperation time firing off letter after letter of complaint to everyone from Tescos to the Government. It was literally like suddenly being married to a stranger. We got through it and I thought we were ok, although I will admit to having struggled with losing my best friend after 15 years together, as since the accident he has never properly talked about anything, whereas before we constantly talked things through. In fact we got together after sitting up all night at a party just talking and we carried on doing that for months after we first got together and regularly throughout our lives after that. Now it's a fight to get him to talk and then when you finally think you have, you realise you are actually doing all the talking and he's just sitting there not contributing.

Don't know when the meeting is going to be yet, as she said it will be nightmare to get everyone to commit to going in the first instance and then they have to try and find a mutually convenient day/time.

Lisa, no not really. I spend pretty much all day every day alone at home. I see my Mum most days and she is often a big help when I am ill, but there are issues there (think of the "but we took you to stately homes" threads). Both my sisters live a long way away and don't really keep in touch much. Friends are joint friends with dh, most of whom we met when he was at Uni, so were his friends first, iyswim. We are seeing some of them this weekend, but there's no-one I could really talk to.

In fact that's what I am starting to realise. I really am on my own with all this. I feel like my world has been shaken because the one constant I've had across the past 25 years is that my marriage was strong and that even if dh is be a bit dopey sometimes, he was always there and he did love me and the dcs. Now I don't feel I even have that anymore. I have no clue what he's thinking or feeling - he won't talk and that just leaves me feeling even more unsafe and with no-one at all on my side. Not even counselling would help, because dh would just sit there and not speak. I have often described having a serious discussion or argument with dh as like punching a sponge, you can talk, rant, rave, shout and .... nothing, no response. It is so frustrating. I've tried not to get frustrated with it over the years, because he can't help it, it was the head injury that started him being like this and I knew that in spite of it he was always there, iyswim. Now though, I don't feel either like he is there - or even that he wants to be there anymore.

Oh I dunno, I'm rambling here. I'm ridiculously tired but can't sleep. Think I'd better try again though as I have to be up in 5 hours for the school run.

Thank you everyone for your support. I was really posting to let off steam, as I have no outlet for it in RL. I really appreciate all your support.

mariammma Thu 22-Nov-12 01:19:58

If the current dh situation is dodgy, blindly trusting dh right now would be incorrect. Even if you found out something unpleasant, all your previous years of trusting him were most probably well-founded and appropriate.

mariammma Thu 22-Nov-12 01:09:36

oh, moose sad

1)your health 2)ds and school 3)sort out marriage

Too much for anyone to do in one go. So it's really ok (essential?) to procrastinate, sulk, ignore or try to reduce your emotional involvement in whichever one or the three horrid areas which isn't top priority right now.

Could you enjoy the weekend without simultaneously trying to marriage-mend?

lisad123 Thu 22-Nov-12 00:41:21

Goodness me that sounds tough.
One fight at a time, it's too easy to think we need to fix everything at once, but we are only one person.
Do you have anyone for you? Not ds but you?

EllenJaneisstillnotmyname Thu 22-Nov-12 00:15:07

((((hugs)))) moose. I can't comment on your DH as my views would be really jaundiced. sad I really hope he gets over his mid life indulgence quickly. People can change, though, I'm afraid and the phone secrecy isn't on.

Anyway, when is your school meeting? I'm so glad your inclusion teachers are on side at least.

Look after yourself, moose. X

coff33pot Wed 21-Nov-12 22:48:53

oh moosemama Honks and ((hugs)) x

Maybe this trip is meant to be to get anything and everything out in the open without the DCs being near to earshot or interrupting mid flow as dcs do.

It will be somewhere neutral and unfamiliar relaxing surroundings so you will both be on an even footing and maybe open up a bit on the feelings?

Perhaps its the 1 to 1 time that is needed to clear the air one way or another x

I am sorry you have this on your plate on top of everything else, your head must be exploding on which way to go next. It doesnt help being poorly and having emotional baggage to deal with on top of the school issue. Remember you are not a bionic woman and you can only do one thing at a time.

madwomanintheattic Wed 21-Nov-12 22:39:11

<soothes brow>

It'll be ok. And if they are your friends, they will understand that life isn't perfect 100% of the time, and will be there if you need them. You don't have to play act.

Take the time for the two of you, and see what happens x

moosemama Wed 21-Nov-12 22:35:59

I have been considering that option Madwoman, but I am just so angry and hurt at this point that the last thing I want is to go away with friends and play the happy couple.

Everyone in our lives thinks we have such a perfect strong marriage, they would all be seriously shocked if they knew what a mess we are in at the moment.

I probably will end up going, just because I am too tired to argue about it. The daft thing is, it was me that suggested, planned and organised it. I was really looking forward to it and now I'm dreading going.

madwomanintheattic Wed 21-Nov-12 22:28:58

Then I think you need to spend some time together. Without the dcs. And knowing that they are with someone who gets it. So that you can concentrate on what is going on with you two...

It isn't a dictat, obv. grin but it might help you get your head straighter one way or another.

moosemama Wed 21-Nov-12 22:28:28

NoHaudin, it was video evidence of one of these attacks that launched the whole MRI (which found new lesions), lumbar puncture (which was negative) and evoked potentials (also negative) thing this time last year - although the attacks were actually in the spring and I hadn't had one for months by the time the tests took place.

They told me I was basically down as 'probably MS' and that wouldn't change until either I as dx with something else or there was more definitive clinical evidence for a full MS dx.

Then suddenly for no apparent reason, at the last appointment they did a turnaround, put me on 12 month instead of 6 month review and said def not MS - haven't a clue what it is - see you in 12 months. They did say I should contact them if I have any new 'serious' neuro symptoms, by which she said she meant, weakness on one side of the body or problems with the function of bladder or bowel. I'm guessing that, as I've had this type of attack before and the symptoms are all documented - nothing new, that there's no point in contacting her again. She said if nothing more significant arises, they will look at repeating the tests in two years. Well, actually they won't because I am NEVER having another brain MRI again in my life - two is two too many (seriously claustrophobic).

Lots of people, including my physio have suggested the Complex Regional Pain Syndrome, is connected, as it is a malfunction of the nervous system and that I should inform her that it's happened.

Oddly, when I was in hospital for blood tests during my recent kidney infection I saw her and thought I should perhaps go up and speak to her. Unfortunately I just felt too ill to get up and walk across the corridor to where she was standing. sad

Personally, I have feeling it's all connected to the hypermobility/EDS stuff we have going on in the family. Apparently my lesions are too vascular to be typically MS, but not vascular enough to be TIA or dementia related. confused The vascular element raises questions for me about EDS, especially as some of the symptoms of CRPS are also vascular in origin.

Unfortunately I think it is all such a tangled mess of connections that there's little hope of the NHS unpicking it all and coming up with potential treatment/solutions.

Ineed - he admitted he cleared the cache because he didn't want me - or the dcs to see what he'd been browsing - on the family laptop, while I was potentially seriously ill in bed upstairs! angry

moosemama Wed 21-Nov-12 22:15:47

Kidneys seem ok now thanks Madwoman. S'pose at least something got better! grin

Yep, Mum is supposed to be having the dcs this weekend. To be honest I considered sending dh away, the dcs to mums and having the house to myself for the weekend.

No, I haven't contacted the neuro <I know, I know> it just seemed pointless after the fact. Mum and dh have both told me to contact her, but I just can't face it. blush

Yes, dh's Saturday revelation was a plausible-ish excuse for that particular let-down - sadly not for others.

Ineedalife Wed 21-Nov-12 22:15:32

Because of my age, I know quite a few men who have done the whole Midlife crisis thing.

I am not saying this is what your DH is doing but with the new job maybe he is just feeling like a change.

When I am stressed I see DP clicking off pages on the web and texting/whatsapping more than ususal and I make 2 and 2 add up to 22.

I know I am doing it but I can help myself.

You are under a huge amount of stress ATM pls try not to jump to conclusions.

Me and DP are meant to be together but sometimes we both go into self destruct and neither of us knows how to stop.

Luckily so far we have been able to sort it out before it goes too far but when there are SN's in the family it just makes it all soo much harder.

Please try to be kind to yourselfsad

NoHaudinMaWheest Wed 21-Nov-12 22:13:14

Those symptoms sound so obviously neurological that I'm shocked the neurologist doesn't take them seriously. Any mileage in a second opinion though I can see that that might be the last route you want to take at the moment. It must be so frightening and worse if Dh is unsupportive.
FWIW my Dcs don't seem to really notice my symptoms even when they are bad beyond saying 'Mummy's a bit wobbly' and they are a lot older than yours.

madwomanintheattic Wed 21-Nov-12 22:12:38

I'm thinking possible TIA again - there might be new markers?

madwomanintheattic Wed 21-Nov-12 22:11:21

Ugh.

Kidneys? <dare I ask?>

Is your mum having the dcs this w/e?

I think you should go. It can't get any worse, and it might give you the opportunity to reconnect/ get some stuff out in the open. Might not be as bad as you fear?

Have you let the neuro know about the episode anyway? I think you need to make sure it is all documented. <and you know - call them next time - <weak smile> or make sure your mum and dh know they are to, and where the number is>

If dh did assume you were out of it on cocodamol, his reticence is possibly understandable? <not defending him, he seems to be being weaselly, but his realization on sat seems like a plausible reaction?>

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