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What would you do?

64 replies

nothingsoextraordinary · 09/04/2012 13:21

This is very long. If nobody can be bothered, I completely understand!

I was lucky enough to have a child seven months ago. I hope what I say next does not offend anyone who is childlesss. If it does, I'm sorry. I really do know what a blessing it is to have a beautiful daughter.

I've not been able to care for her or myself due to spd. Unlike almost everyone else, it is not responding to treatment - it's just getting worse. I'm continuing with therapy and have taken antidepressants - ended up so doped I couldn't be left with the baby even if it was possible to care for her. I can't even do 'sitting down' activities because of the pain and because I literally have to spend every minute in exactly the right position to keep strain off the pelvis. Try communicating with a seven month old in those circumstances!

Nobody I know would be aware that I feel this negatively. I would talk to someone about it, but there is absolutely nobody. I was new to the area just before this condition hit a year ago, and nobody calls except a Home Start volunteer. I write friendly notes and letters that nobody ever replies to. My mother sometimes says something along the lines of 'I bumped into so and so and they said they felt dreadful they haven't been round - so busy - and I said not to worry, she understands people are busy. It's good you have the family support.' She wishes the spd hadn't happened, obviously, but she's very keen to have the baby every minute of every day and you know what? I'm grateful but I'm not that happy about it. She's a baby whisperer but totally overwhelming. When I'm with my daughter in her presence, she keeps up a high-pitched chatter while leaning close into the baby's face. My voice is softer and I think she just can't hear. But if I have a problem with it, my mum is going to say 'Yes, I thought you were jealous of me.' (She did a night class in counselling).

All the books I read about parenting said 'Get out of the house in the early days! Socialise! Otherwise you'll get pnd!' I think of mother and toddler groups and it seems an impossible dream. My daughter doesn't seem to recognise me, although I make a colossal effort to get her attention when I see her. If I say I'm depressed everyone will be like 'Aha! We knew this was a psychosomatic condition! Have some more drugs!' Also, everyone says 'At least you have a healthy baby and that makes it all worthwhile, doesn't it.' I smile and say 'Oh yes!'. But really. What has my daughter's health got to do with this? I can't sleep, make a meal, work, go for a walk, sleep with my husband - and all this is irrelevant because she's healthy? What's the connection? If this level of disability was known to accompany being a parent, let's face it. Nobody would have children. And to be a mother and not be able to hold your child is an insanity-inducing level of pain. There is no way to be ok with it.

My husband avoids me. He's been under colossal strain and I think just looking at me makes him feel guilty because he can't fix it and would like a proper life. Plus our finances and his job are in jeopardy as a result of all this. I've tried saying 'let's have a date night' but they're a disaster because he looks very miserable and says 'Sorry, I don't know how to enjoy this sort of thing' - referring, I think, to time together. Occasionally I think I glimpse how he sees me and it's terrifying. He doesn't see a person anymore. Just a scary thing he can't get away from. I would like to give something to him but I don't have anything he wants.

I have tried reaching out into the community every way I can think of, but it's hard when you can't leave the house. The doctors say this condition should have ended with pregnancy and offer more tramadol. They won't even write a referral letter because it's a condition related to pregnancy (?). Yes, all of them. Physios are hopeful but the backward progress is perplexing and they have started to say 'This is a chronic problem' as if it gets them off the hook (there is arthritis on the x rays). I've been reading horrific stories of failed surgery for spd (low success rate) and the situation does seem to suck. Also, we're in Northern Ireland and the disability charities aren't funded to help people here. I've tried Health Visitor, OT...nothing. Not even a disabled parking badge. When the condition didn't clear up after the birth, I thought 'Well, there will be ways of dealing with this. Others will have done it before.' But that doesn't seem to be the case. It seems like you really are left to rot in a room.

You may say I'm being selfish and ridiculous (I'd be interested) but you haven't spent a long period of time
(1) on bedrest
(2) saying 'no, it's fine, go and enjoy yourself'

(3) trying not to mind that I know my husband isn't calling to see how I'm doing in case I burst into tears and spoil what he's doing. (He texts though, I think because he wants to know I'm ok, even if I have to lie to say it, and that's easier in a text).
(4) Trying to be 'fun to be with' when someone actually comes through the bedroom door because that means they're more likely to return and I'm actually that desperate. (Doesn't work. Sickness scares people).
(5) Talking to myself just to get the chance to talk
(6) Phoning Samaritans when I can't stop crying, only to find everything is exactly the same as it was at the end of the phone call
(7) Trying to remember what day it is and realising I have painkiller head and can't remember
(8) Seeing summer coming and remembering last summer (in a wheelchair with spd) and realising the awfulness never did end
(9) Missing my daughter (obviously the fact that she's happy with my mum is terribly important)
(10) Waiting for a bird to fly by outside the window because it really is exciting in comparison to the blank sky
(11) Trying to stop myself thinking about the future

What would you do?? Really?

OP posts:
MavisG · 11/04/2012 14:04

Really sorry to hear that, nothingsoextraordinary.

I hope things improve for you soon.

I agree with potoftea about talking to friends with older/no children. I look back and see that I didn't ask for as much as I could have. I wouldn't worry about the guilt thing: you're more aware of that than they are, and besides, you're just asking them over, so long as you don't ask, say, 3 times in one conversation ('so can you do the day after then? The day after that? The one after?') then you're not cornering anyone.

You have to give your friends a chance (or two, or three) to step up. I regret not doing this. Some of them will feel awkward, think 'I never want company when I'm ill' etc. And some of them will turn out to be flaky. It's one of the hardest things I've learned from my spd: some of my friends aren't as steadfast as I thought. But two of them, and my husband - I'll love them forever for sticking by me like they did. The others? I'm still friends with them (now that I'm better, and things are easy). But it won't ever be quite the same.

funnyperson · 11/04/2012 14:24

OP I think you are amazing to have written such a long and caring post about your DD.
She is your DD you are her only mum. Your mum is being unhelpful.
You need help to keep your DD with you. I think call on your friends. You need them now to help you look after and keep your DD. You will get better but you need practical help now.
Ask your mum to come and do your housework while you look after and play with your gorgeous DD.

TheUnsinkableTitanic · 11/04/2012 17:04

lol portstewart is not that far away (well not too much)

i'm bound to be due a posh icecream some time soon :)

how is today going?

hathorinareddress69 · 11/04/2012 17:06

Nothingso - you've a pm

nothingsoextraordinary · 11/04/2012 21:40

Mavis and potoftea - Finding out who your real friends are is certainly a double edged sword, think I'd rather not have known! Will mull it over.

unsinkable - I used to make those icecreams! Come by!

hath - Sorry! Messaged you.

funnyperson - Thanks :) My mum needs to be around my dad at her house because he has Parkinsons. We're doing some sums to see if a homehelp would work on a short-term basis.

OP posts:
plantowed · 11/04/2012 23:01

I had similar mobility situation in pregnancy and after. Was at the doctors continually for diagnosis which took them months of me pushing and not accepting no for an answer. I saw all 10? GPs in the practice before a very young locum diagnosed it. Then I took every drug on offer and accepted all possible help. Luckily we could pay so I didnt look into claiming anything but can you claim DLA or similar? During pregnancy we had planned for live in help/au pair but didnt in the end but I would still do so if that was the only option for DC to stay at home with me.

A cheap source of great help for me has been neighbours teenagers for holidays and after school. Then it is on your terms very different to accepting from your mum. I kept babies in bed with me, co slept and breastfed laid on my side but obviously different for everyone as I have permanent and degenerative condition but with some relief from medication, so not same symptoms.

funnyperson · 11/04/2012 23:12

Yes I was thinking about DLA too - it can be given for short periods as well as for long periods and comes through quite quickly and the money comes in handy to pay for help.

FairhairedandFrustrated · 13/04/2012 19:23

How are you today?

I'm about 15 miles away from you on the Ballymena side.

nothingsoextraordinary · 14/04/2012 00:05

Fairheaded - What a small world!
Funnyperson - DLA is next on my to-do list. Very thick booklet.

Update: I've not heard anything from the doctor's surgery about the complaint, and no referral letters either. Re: Home helps - DH is worried about cost as we're burning through our 'house money' (we currently rent but had sold one). We're likely to be totally broke quite soon, unless he can return to work and do a lot while he's there. So more sums needed. In the meantime, it's a good short-term measure and we've put out feelers on that basis.

I have an appointment in England to see a specialist physio next week. Hopefully will also tie in with seeing a surgeon.

My mental state has been very bad today. I can't handle the lack of structure and not looking after DD. DH sometimes brought her in but she's going through an extremely busy stage and finds it a bit of a bad joke to be left with someone who can't even pull her up onto her bottom more than once.

At unpredictable times and only on some days, I feel in the grip of a sort of driven, furious despair. Even before the spd. Back then I coped by walking and riding, good weather and bad. I also did jobs involving children, which was a distraction! Without those coping strategies, and with the situation putting a very harsh spotlight on the marriage, I'm getting hysterical. DH is focussed on fitting in home/baby/work in one long frantic muddle. It seems like we're going down, individually and together. I don't see how we will make it as a couple, at which point DH loses heart also.

DH had a friend come for a meal with us tonight. She hung out with DD, helped DH bath DD and later, chatted to both of us. It was so nice to speak to someone from 'outside', yet I also felt crippled by my own oddness. Does anyone know how to behave normally despite the circumstances?

OP posts:
funnyperson · 14/04/2012 00:53

Dear nothingsoextraordinary you will get better this will pass. Some of your 'hysteria' will be due to pain. Its all understandable. You need your DD and your DD needs you. Your marriage will survive. Your DH sounds great.
I suppose the main thing you can do is stay positive for the sake of your family. Ban those negative thoughts. You can do it. With a bit of help at home you can stay part of your family while you get better. Get regular phone counselling sessions from a helpline somewhere if you can.

MavisG · 14/04/2012 07:57

Agree with funnyperson. Plus, allow yourself to fully feel your feelings. They're valid. Feel them, give them time, and only then start to process them/deal with them intellectually/decide what, if anything, to do about them.

nothingsoextraordinary · 16/04/2012 21:37

Thanks for that.x

OP posts:
hathorinareddress69 · 16/04/2012 21:39

Did I text the wrong number? Blush I did text you meant to pm you and forgot Blush

nothingsoextraordinary · 21/04/2012 15:33

Hi hath...didn't receive anything.

OP posts:
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