When I asked for luck I didn't mean the bad variety!!!

beanielou

SA~Prepare yourself for a very long wait re PIP.Sign.

brizzledfw

They are v good quotes MIT! Made me smile. Think that last line of the movie is a bit odd but then other than that an awesome movie:)

PLMBL..hope weekend is going well. Yes get the MP properly involved. This is ridiculous and just adds to your stress...put the boot in

please-let-me-be-lucky

Busy weekend but none of it as planned! DH's best friend was supposed to come round early yesterday morning to change the brake pads on my car. He didn't arrive until 12 noon and then he didn't leave until 3pm, so we missed the time for meeting my Grandma etc.

We then went food shopping to Mr A's, went to Arg0s for curtain poles for our room (found out that they and H0mebase are owned by the same company so the poles are exactly the same but less than half of the price, so £20 each not £45 :eek:) and then agreed to get the boys a McD's for tea. DS1 always has his burger with nothing but cheese on, so that's what I ordered. He took a big bite and then threw up all over . They'd put some kind of sauce on and it literally made him sick. The manager was very good about it though and replaced the whole lot for free, as well as ice cream sundaes for the boys. So what was supposed to be an extravagance ended up being a brilliant MSE treat (except the sick part!!).

This morning we collected a free single bed and mattress for DS2. The elderly Auntie of some friends of ours passed away before Christmas, and they have sold her house and are in the process of clearing it out for the new people moving in next week. The bed had been in a spare room and never been used, so we were thrilled to be offered it. DS2 was still in a toddler sized bed so it saved us having to buy a new one :T. Amazingly, it fitted into our car with all the seats folded down so we got it without needing a van either. We then spent several hours rearranging his room though! We still have nursery furniture in his room though so we will have to spend on some new furniture and some paint. Looking forward to him having the big boy room that he deserves though.

We then went to meet Grandma etc for coffee, but I didn't feel well all of a sudden so I didn't have anything. MiL paid for what DH and the boys had, but it still wasn't a NSD as I bought a new bottom sheet and valance for the new bed while we were out. Total spend £13.

Pleased to have had a busy weekend, it's taken my mind off the sinking feeling I've been having. It's obvious I just need to keep busy!

beanielou

Not too sure about this sinking feeling that you have been having
Great news on the bed though.
Take care xx

Sun_Addict

Hi Lucky - hope the sinking feeling goes soon but sounds like you've had a very productive weekend (apart from the sick bit!).

chevalier

Hi lucky
I have just read the last 12 pages of your diary, to catch up with you. Oh boy, what can I say, you are truely amazing. You COPE with SO much. But I also get the feeling that it is all getting a bit much.

I was wondering whether there is any respite care available for DH? So that you knew he was safe for a few nights, and you could relax? The reason I suggest this is that you and you mum and MIL all do the best they can, but the only way you will have a relax, is if you know DH, is safe and under medical supervision....

Sorry if I am speaking out of turn, but the last thing your family needs is for you to have a breakdown from all the stress and worrying.

chev

brizzledfw

Good idea Chev..give it some thought PLMBL..

Good to hear your news and good fortune..around free Maccy D's..beds etc etc..you deserve the small breaks (whilst you're waiting for that overdue large one!! )

Hope this week is less stressful

x

*Robin*

Hi Lucky, :hello:

Just catching up.. Must say I share Chev's concerns about lack of respite for you, so have made a few behind-the-scenes enquiries. Turns out my biker mate used to spend time at the local branch of a rehabilitation charity to give his wife a break:

http://www.thedtgroup.org/

He went there between hospital and coming home, and then for regular shorter visits over the next three years, until he was [literally] back on his feet.

That particular organisation doesn't have a branch very close to you, unfortunately, because they seem to be easier to deal with than NHS facilities. But perhaps another charity covers your area?

My main thought re following up the possibility of an assistance dog, is that it would relieve you of the responsibility [and worry] of watching for seizures, plus ensure regular healthy outdoor exercise of course..

Good news about free new bed for DS2; sounds like a great opportunity to create a 'big boy's room' for him.

McD's... Yuk but at least it was cheap yuk; poor DS1 for his experience which resulted in the freebies.
My kids only went there once; never asked to go back lol.

please-let-me-be-lucky

Thank you everyone for your support and suggestions. Chev, you certainly aren't speaking out of turn (and wow to reading 12 pages!!). Thank you once again Robin for going the extra mile to give me information. I have to say I've been feeling the need for respite.

I'm feeling quite good today (and for once I actually feel proud of myself as I ran on the treadmill for a whole 5 minutes :rotfl:), but I will try to explain the imbalance I've been feeling recently.

I'm thrilled DH survived the accident, obviously, and that his injuries were not worse than they are. If someone said they could wave a magic wand so that the accident did not happen, I'll be honest and say I don't think I'd want them to. The accident may have damaged DH, but it actually made him into a better person and I believe it saved our marriage. His drinking was getting out of hand and I'd already decided I wouldn't end up like my Mum did with my Dad (who was also an alcoholic). I'm extremely thankful that the accident was nothing to do with alcohol, as I may not have been able to commit to being the carer, knowing that alcohol was the cause. Due to the accident the boys get to spend a lot more time with their Dad and that on it's own is worth it.

However, sometimes the enormity of "this is probably how it is going to be for the rest of my life" starts to engulf me. Knowing that it's doubtful he will improve is very sad, for all of us. I put a lot of effort into making new memories and they are cruelly erased a few hours/days/weeks later. I hate the 'benefits' label and I hate not having any money to speak of. I get annoyed and short tempered when I have to say the same thing for the 50th time and then I am consumed with guilt for feeling that way. Even small tasks like bringing the washing in get forgotten and then I have to get it in at 9pm in the dark when I realise he hasn't done it (can you tell this happened tonight?!). I'm tired. I can't just go off and do my own thing. Sometimes I feel trapped.

So, lovely friends, I promise to phone up and book myself a hair appointment in the morning. This is the first step to getting some me time. I shall then take bigger steps to getting everyone looked after while I take some time just for me. Xx

PS, today has been a NSD :T Getting quite good at them now

Chocforever

De-lurking to say your feelings about the situation seem perfectly understandable and I agree with others saying that you seem to get little respite care. I admire your positive view and tenacity.

In the event that DH's epilepsy remains uncontrolled, a last resort can be a visit to the Gower centre residential unit at Chalfont. I don't know if you are aware of it, but it is an offshoot of the Neurological hospital in Queens Square and is used for difficult to diagnose/difficult to treat epilepsy. For example, it is a place where new medication can be tried out in a safe environment if the person's seizures are severe.

Spaces there are limited because patients are under close supervision 24hrs a day but it can be a worthwhile use of everyone's time if seizures are relatively frequent.

Best wishes