I am fed yup with it, when isit going to end?

[misdee]

just dont know where it all started and where its going to end really.

eczema and heart problems are ruling my life. i dont know what is worse at time, seeing my dh on a LVAD or seeing my children desperatly tearuing at their sore painful skin, and in tears because of it.

I am fed up of health care professionals, of being told i am over-anxious, being told to chill out, being told to communicate better our needs, being told i need to do xxx and zzzz before xdate so that xxx will be sorted. I have piles of forms to fill in, stuff to sort out, people to call. I am completely snowed under.

[misdee]

dd1 just got up cos she is itchy.

oh i hate this. its breaking my heart to see them suffer so much.

[spacedonkey]

((( misdee )))

I don't know what to say, except no wonder you are feeling snowed under! You are doing brilliantly to cope with such a difficult situation, but do you get enough support, that's what I'm wondering?

xxx

[bunny3]

can sympathise on the eczema front. Ds has been tormented by it for 6 years now. He also has other problems and I feel it is all so f*cking unfair. Yes, heartbreaking, definately.

[misdee]

tbh, no i dont get much meotional support. because quite simply after all is done in the day i dont have time to sit down with a preofessional about how i am coping. days start at 7am, kids at school for 8.45-9-15, dash to harefield, dash home, pick up kids, make their tea etc, put them to bed, then try and catch up at home.

[noddyholder]

Misdee you poor thing I have been in that tunnel and come through it but I know at its peak I thought it would never end.Is there anything I can do to help?Do you fancy a free holiday in Brighton?I am serious if you fancy a cheap summer holiday let me know xxxx

[gothicmama]

write a list of what you need to do - can you copy info form one form to another- have apiece of paper /pen with you and if something happens which is aneed write it down , when you have a list of needs priotise them and then presentthem to a professional hth

[misdee]

i'd love one noddy, but do you fancy being vad trained as well? are you within an hour of harefield?

my life is f*cked.

i m so peed off that dd3 now has eczema, i did everything right with her, she has an egg allergy as well. hayfever is through the f-ing roof here, dd2 is nightcoughing now. we are keeping piriton in business i think.

[noddyholder]

I could come and help you for a few days I am serious Let me know.My dp is at home for 10 days and I could go.Could you not tell someone you just can't cope with Peter at home with all the other problems you have to deal with.You need help.What about asking social services to get you some practical help?

[noddyholder]

I am in Brighton Misdee so great for the kids and you could get some rest too Think about it if you need a break

[misdee]

social services are providing us with carers. funding still hasnr bwwn approved (been almost 2months now).

am hoping to get dd3 eczema under control as quickly as possible. it took almost 3years to get dd1 under reasonable control, i dont want that to happen again.

[gothicmama]

if youneed help talking to ssd let me know or with form filling

[misdee]

peters sw is dealing with them. she is calling the pcp/pct (i cantr remember which) every day to find out about funding.

peter is coming for an overnight stay at the weekend. am dreading it but also happy.

we've come so far in the last year, he was dying this time last year. but i still cant let myself hope. i dreamt he died last night, iam so scared of transplant, what if we;ve done all of this for it just to fall apart and he doesnt pull through?

[foundintranslation]

If it was doable, I'd help you long-distance with any of the practical stuff misdee, make phone calls for you, etc.
Did you say on another thread you need a T-shirt for dd1? What kind?

[misdee]

its an eczema mitten t-shirt. i didnt get the older 2 theirs till they were bigger, so dont have one to pass down to dd3.

[gothicmama]

misdee has peter's sw offered you a carers assessment to look at your needs etc. If not ask for one and also look at claimin carers allowance

[foundintranslation]

can you email me? sparkly has my address. (it's very identifying so I won't post it)

[misdee]

i'll CAT you.

[noddyholder]

Misdee can you email me too Thanksxx

[mixedemotions123]

misdee, I really feel for you. Don't lose hope, you are the cement holding everything else together. I know that doesn't make it any easier as the pressure must be unbearable, but you will get through it all I am sure. Even Strong people have to have a scream now and then. Really hope you feel a bit better today, and wish you and your family all the love and luck poss.