Am feeling much much worse - I think the shock is wearing off now

[Mummy2TandF]

I really didn't want to keep posting and depressing people, especially as you have all been so kind but I am having a really bad time atm , I feel so alone and I can't stop crying . All my rl friends have been saying how brave I have been but I am worn out trying not to cry in front of them They all have their own lives and they don't need me sobbing I phoned my bf the other evening and couldn't even talk, just sobbed and she said "what's the matter" I just snapped at her and said - Oh, I can't begin to imagine what could be wrong with me . I feel angry and sad and alone
Toby looks out of the frech doors every night now and says, goodnight Daddy in the moon, I love you - I told my mum tonight that he does this and it breaks my heart every time and she said that I had to tell him to stop because I will turn him into a morbid child .... Honestly, do you all agree with her?

Take care you, hope you can get some sleep, can't help except loads of virtual hugs and caring

Hi Mummy2T&F. Glad you kept yourself busy tonight. Sorry they couldn't help more at the GPs, but it sounds like they were at least reassuring about why it's not such a good idea right now.

glad to see that you saw the better doctor.
and glad to see you had some mates round for company too.
still thinking of you all.

Mummy2TandF - I just wanted to reassure you about the echocardiogram. It's completely painless for them. I'm not sure of the age of your children; the little ones just sometimes get a bit stroppy about lying still for a while but you can be right next to the bed whilst they have it done. Often they will have a DVD player or video so they can watch a favourite film - I used to distract dd by feeding her chocolate buttons. She'd often drop off to sleep as she found the test quite relaxing.

Shout up if you have any questions about it.

You are coping so well with all this and should pat yourself on the back. Hope you got a decent night's sleep last night.

Take care.

mummy2:

I really dont think that your Dc's are to young to be diagnosed if you see my post further down.. i am a nurse so can help you find some more stuff out, should you need to...

I'm certain sure it can be diagnosed in early childhood, as I know it can be neo-natally.

The ECG is not at all traumatic. Its just a bit boring really for children! about 10 stickers on the chest, arms and legs attatched to machine. doesnt even last for very long, if they can sit still for it.

I hop your day is going ok today. thinking of you.

Hi mummy2tand f --did you get my mail? Dont have your number, but give me a shout if you can xx

Im here mummy2tandf...have emailed my brother with what your gp said and asked him where you can got for more support and help. There is a Marfans Society.............google it.

You are doing brilliantly.......well done and hang in there.

xx

Hi all, thanks for your replies - i didn't get to sllep until 4:00am last night and am still up tonight I am sure the lack of sleep will hit me sooner or later! Thanks for all of have said about the ECG but apparently the one the dc's would have to have involves, scans and ultrasounds (like when pg) and it can disturb children, I really don't know what I am doing, just trying to busy myself with all sorts of things atm.
Mummypoppins - Thank You so much for reading this thread, I know that you and your brother could do without me, but I am finding you a support
Have had a bit of set back today, I got the final decision from income support, the law states that a person in my situation should be able to live on £59 a week and because I am entitled to a widowed parents allowance that takes me over that amount by £18 per week I am not entitled to income support, which means I get no help with the mortgage or anything I don#t know what I am going to do Am going to try to get some sleep now though because Toby has playschool in the morning - Night xx

and at what you are expected to live off.

Hope you get some sleep tonight.

That can't be right. Somebody must know more about this. The last thing you need right now is a mountain of money worries.

I hope you get some sleep tonight x

If you have a Welfare Rights office where you are contact them. If not get in touch with your MP.

Google your postcode and MP

Best of luck

This is what my brother replied :

'The first thing to say is that the GP is talking out of his/her rectum (not unusual). ECG's cannot ever diagnose Marfan's. Marfan's is a clinical diagnosis based on family history, features such as high arched palate and long fingers and findings on echocardiography or cardiac MRI.
The issue with her children is straightforward at the moment in that, assuming her husband had Marfan's, they have a 50% chance of inheritance and they don't need to see anyone at the moment. The features of Marfan's are often undetectable in childhood and become apparent around/ after puberty so it's at this stage that they can see someone if need be. They don't need drug treatment and don't need any lifestyle changes.
I think the most important thing now is to make sure that 'suspected Marfans's' is clarified as much as possible for future reference. There are lots of cardiac syndromes that cause sudden death in young people and, for the children in the future, good data now from their dad could help with their treatment.
She could get in touch with the Marfan Association UK (marfan.org.uk/) for support. Hope that helps. '

So you need to make sure the coroner is on the case as far as Craig is concerned. Are there any other members of craigs family who have any physical symptons ??

Right we need to sort your finances at thats ridiculous. You need to find a solicitor who specialises in Welfare benefits. I will post in a bit when I have had a look for you. Can you just confirm you live in Romford ?

Do you have any savings ?? Some of the benfits may be means tested.

mummypoppins - thank you for that, it helps to know that I don't really need to worry about the dc's until puberty (doesn't mean I wont though) I have already been in contact with the Marfans association.
Craig is one of 5 siblings and only 1 other displays characteristics of Marfans, on my request he has been to his doctors and had blood tests that have come back okay (but I didn't think you could diagnose by blood) and has been referred for his cardion MRI and echocardiogram BUT he is saying now that he doesn't think he will go I think he is scared to find out because he is 40 now and is worried that it is too late even if he does have Marfans, have tried to argue with him that he would be getting diagnosed for my children (and his) but he is still unsure - Yes I am in Romford, I agree that the financial situation is ridiculous! I don't even know what I am going to do about the dc's birthdays, they are really soon - Life wasn't supposed to be like this

Oh and no no savings ... we used to have savings but when Craig's old firm went bust we had to use them to live off of We have really had such a bad 2.5 years really, I didn't think things could get any worse, but once again I am proved wrong, I don't think they get much worse than this

Mummy2TandF, Winstons wish are very good. It is an organisation that deals with children who have lost a parent. I have found these very helpful. It is hard to know what to do for teh best as everyone has different opinions-but they have been a fantastic support for me.

Everyone is being helpful on here-but it is soo hard trying to get the strength to talk to people and sort things out. Can you ask someone to do this for you?

ok I am om the case. Sent a message round a legal forum i belong too for a call for a solicitor to help you under the legal aid scheme.I will ring and speak to them for you.

Will post again when I get a response.

I will send you some money to buy DC's birthday presents. People were so wonderful to us as a family when my father died it is the least I can do and please dont worry it will be no hardship to me or mine at all..............email me at doliver@harrison-clarkdotcodotuk with your bank details or address.......now everyone will know who I am I will have to change my name !!!

Oh and by the way.................dont argue ( or cry ! ) you will get through this girl your supporters on here will make sure you do !!!

xxxx

mummypoppins I don't know about M2TF, but you've made me blimmin' cry. How kind are you? I feel I want to thank you for helping her even though its not my place to do so. If that makes sense?!?!

Amen to that Mistypeaks. And my thanks added too.

MummytoTandF - sorry I have been off the thread with RL probs - but I just wanted to say I have not forgotten (it's callmemadam btw) and am contacting you via LittleLapin. I hope that's OK. {hugs}

mummy2tandf - Did you get my mail?? Im away in North Wales this w/e..but definetly meet up next week if you like? hugs xxxxxx

Bump for mttaf. Weve missed you are you ok ?

After speaking to some legal contacts the consensus is that the CAB would be the best place to get some advice on your benefits and also any debts you have.

I will happily ring the local one in Romford for you if you think that would help.

Take care
MP

amazin woman - I am so sorry that you are going through the same as me, it is horredous isn't it
Thank You everyone for thinking of me and mistpeaks than you sooo much for your help, you are so kind.
Beller - I haven't had a recent email from you
mummypoppins - you really are kind, your post made me cry, mumsnet really does restore your faith in human nature, especially when you are feeling so alone in rl, thank you for all your help with the finances - I think I may have sorted something .... I think I mentioned before about the benevolent group attached to Craigs work, well I have contacted them again and they say that the normal procedure for situations like mine is to accept the "no you don't qualify" and then appeal (there is a special hotline number apparently) and although I don't qualify for income support because of the widowed parents thing, I still may qualify for help in other areas, the lady I spoke to told me that they wont re-assess for 39 weeks but she then phoned me back and said because I have been widowed they will re-assess after 8 weeks instead. It is all a minefield to me but at least the lady from BEN is helping. I am going to try to get some sleep now because I have not been to bed before 3:30am any night this week. Once again thanks for thinking of me, Night x

Glad to know that you are getting some help Mummy2TandF. But don't discard Mummypoppins' help.
Also there is a Welfare Rights office in Romford, this is the address and number:-
WELFARE RIGHTS UNIT 16 Marks Road, Romford, RM7 7AB 01708 434444;
I have had tremendous help from them here in Northampton as they know all the loopholes and extra benefits you may be entitled to.
Give them a ring on Monday, they will help with form filling and everything.

dutchoma that is exactly the place to go. Mummy2tandf you must ring them...........there is no way that you are expected to survive on 89 per week FGS.

have just sent you another one, im off tomorow and wondered if it was a good time to pop over and see you? Have left my number on the mail xx