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So utterly fed up

(13 Posts)
FairytalesAreBullshit Fri 28-Apr-17 10:21:59

I have a multitude of congenital issues, one of them affects eating and my digestive tract. I can be hungry, but as soon as I contemplate food I start to feel crazy sick. Like today I was thinking of what I could eat, only looked what was there & had to lie down. With fluids it's hit & miss if they stay down. This has been a life long issue. I don't eat out or really order food or even get a portion of dinner as we know I can't eat.

Specialists have said apart from the meds I have including ondansetron which is a strong med, they can't do anything more.

I sleep like crazy too, as I have next to no energy.

With all the pain and other symptoms, I feel like I'm failing the children. As I'm just so lifeless.

It's known I'm not going to live to a ripe old age, I feel sometimes like I'd be better off that happening as it's not really fair on anyone. I've seen professionals about it, a psych said your life is shit, you're going to feel like that. Which was strangely reassuring.

I love them to pieces, but cant help thinking because of what I can't do I'm failing them. I love Nando's but DH will take DC's with other families as if I get too overwhelmed I panic about being sick in restaurants.

I'm known to heave for hours on end. I've a friend in the same boat as me, she's in the US though, they've been honest with her and said she could get worse and die at anytime. I've sought help from specialists who look at my diagnosis' and basically go, no nothing I can do.

It's almost like purgatory, having a drink then having to wait 10 minutes to see which way it's going to go.

It's a mopey post I know, just so fed up of how things are.

itsmine Fri 28-Apr-17 10:29:35

Message withdrawn at poster's request.

Cantthinkofadecentusername Fri 28-Apr-17 10:40:49

" a psych said your life is shit, you're going to feel like that. Which was strangely reassuring. "

I get this someone told me something similar once, that if you're in a bad situation, and have tried what you can to change it and it hasn't worked, you're going to feel shit about it. Strangely liberating and made a change from the endless advice and being told to think positively.
I'm sorry you're in this situation, and sorry you feel the way you do.
I'm not going to offer words of advice, other than to say that I think the biggest gift you can give to your children is your love and belief in them, and that you sound to me like you do that.
I'm thinking of you and wishing you well, take care x

FairytalesAreBullshit Fri 28-Apr-17 10:43:41

DC love me being an inpatient as it means a trip to the shops & a Costa to spoil them.

I've reached the end of the line treatment wise. I listened to people's assertions about benefits, but oh the forms.

I get in trouble with DH as when I have money I do like to treat them. He thinks I'm over compensating. Which is probably true. But at the same time I think of when I won't be able to do that. Like I might never see them married or have kids.

DH and his attitude to me in general is far from pleasant. Luckily seldom in front of the kids. He moans about my spaz chair, or calls me a spastic. Then in his next breath he'll be having a go saying get a job. Christ I would love to work, but shifting from being supine on the sofa is a challenge in itself.

DS came down the other night, angry at his early bed time, so thought I'd be honest and say oh it's because Dad has gone to the pub. When I mentioned DS thought his Dad that he liked a friends Mum, DH said that's wishful thinking for DS & DD as this woman includes them as she's got an only child. I was left thinking he really is fed up of this after 15+ years.

There's been so many near misses where I've been really ill, I think he's just got really matter of fact about it all.

My time with DS the other night was so lovely.

Like Monday coming up they're going to a beach which I loved doing. But DH says I'm better off at home. I'd like to watch them play sports but it's inaccessible.

The nauseation and vomiting is so draining, I would love just to be able to eat like a normal person. Now it's got to the stage where fluids are becoming an issue, it really concerns me.

itsmine Fri 28-Apr-17 10:51:09

Message withdrawn at poster's request.

FairytalesAreBullshit Fri 28-Apr-17 10:51:10

CantThink sorry you've felt similar. I get all the time that they should give you a hyst, they should do this, they should do that. I even had a letter from a friend saying you're existing not living, the surgeons said it's just too complex.

If there was this ultimate magic cure I'd go for it.

I hate the assertion that it's laziness.

I hate that I get this feeling that when DH leaves, there'll be super Mum taking my place.

I'm lucky that DC value me because of liberal parenting methods. Also because no question is too stupid. They know I try my best. I don't shout or smack them, I explain why not to repeat a negative behaviour. The chat with DS was honestly so lovely, especially when he said that Dad had said something to someone, about how isolated I am. DS said I'll always be your best friend. Which from a teenager is pretty cool. DD I worry about her getting my health issues.

FairytalesAreBullshit Fri 28-Apr-17 10:57:36

I had a welfare check a few weeks ago as I think neighbours were overhearing DH talking to me & weren't impressed. They're putting in support and sorting stuff. They said I shouldn't tolerate it because I feel guilty I'm not this all singing & dancing Mum.

So they're looking at Direct Payments as if anything it'll give me support. Plus there's a charity called Leonard Cheshire who do their hardest to get you into some kind of activity, so you have something to do. There's also other charities that can help. Ironically I feel guilty about that in case someone misses out because of me.

My family seem obsessed about me dying and who it's going to be billed to.

Badweekjustgotworse Fri 28-Apr-17 11:00:44

fairytales just wanted to respond and say that your dc sound amazing and it's sounds like you have a really great relationship with them. I've been ill on the sofa for the last two days with my toddlers at home and it's no picnic, I'm in awe of you dealing with chronic health issues for years and still managing to bring up two children and not only that but have such a healthy relationship with them both.

FairytalesAreBullshit Fri 28-Apr-17 11:00:55

I don't know if I'm just being daft but the nauseation and sickness is getting me down most. An example, earlier I was thinking about food that can get delivered. 2 minutes of looking at sandwiches, I thought, noooo I need to lie down. Then daft breathing exercises. All from looking at some yummy sarnies.

FairytalesAreBullshit Fri 28-Apr-17 11:11:23

Badweek - I am truly blessed, I had a wee argument with school as they were saying that DS had said for something he enjoys, and gave an example of helping me. Which started support Dec time at school.

DS since a toddler would get so upset if excluded from helping. I don't see it like he has to do it, more that he's really on the ball. An example I got rushed into hospital, DS was the one saying Mum you need to go to hospital. Paramedics have been more of his life than DD's.

DD likes playing nurses. DS even joins in, we do operations where you like blow their belly to stitch it up. All their idea. They'll just lie next to me and say let's play operations. Or I got the red noses, DS invented a 3 way game of throwing the red nose between 3 of us.

You might find you can coax the toddlers into something simple but fun. I don't envy you being ill with toddlers, I'll hold my hands up and say I wasn't really into the baby/toddler stage with either DC. But I insisted on BF & forgoing meds to do this. But it's hard work if you're reasonably well, so really hope you feel better soon.

In hospital DS & DD love being on the wards as I'm usually the youngest there, they get made a fuss of as I'm quite chatty so I've made friends in hospital.

One old lady was really quiet, she surprised me by talking to me once, she was saying how you could tell there was a bond and acceptance of things with DC. As they climbed on the bed for a cuddle. It usually ends in the electric beds getting broken as buttons, oh the buttons. But even visiting others in hospital, it's like a home from home.

Do you expect to be better soon? Will DP/DH take over for the weekend?

maras2 Fri 28-Apr-17 12:08:09

Is this so called DH the one who threw water over you because you had a cigarette?
Bastard! angry
Surely he knew about your illness and prognosis before you married.
Plough through the bloody awful 'war and peace' forms to get some financial help.Apart from that I have no advice and as much as I'd like to say LTB, it'll be hard to cope but if you have an extra bit of money it may help you to start forming a plan to kick him out without you losing the kids.Good
Oh, about the nausea,have you thought about using cannabis or asking the doctor for artificial and legal cannabinoids?

ChestOfDrawers Fri 28-Apr-17 12:27:45

Hi Fairytales. I don't really have any advice, other than to encourage you in getting any support, money, or help that might be available. I just wanted to post to say I'm thinking of you.

FairytalesAreBullshit Fri 28-Apr-17 12:48:11

Can they prescribe them on the NHS? I told the pharmacy certain brands of tablet don't work that well, apparently they get what they're given, so you can't specify a brand unless on a prescription maybe. But I only know what the box looks like not the name of the company.

Ironically that's another lot of forms to fill in so I can have social housing. It'll be sad for DC, but H is going to be doing his own thing. I was ill when we dated, but I don't think when you're given a prognosis you never can fully predict how bad things will get.

He does his own thing pretty much. I'm just annoyed that I'm not allowed to do certain things. I know it's about removing power.

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