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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:
MrsKittyFane · 09/04/2012 13:32

I'm so sorry OP. Your illness is making you depressed not the other way round. You are in a terrible situation but you are doing the best you can by allowing your mum to help. Your mum is undermining your confidence though and you feel pushed out. Your DH is in a stressful situation at work.
So, what can you do? Be kind to yourself. You can't help what's happened. Talk to your GP and tell them that your situation/ illness is starting to get to you and you are finding it hard to be positive.
All the best OP, take it one day at a time. Your baby loves you because you are her Mummy.

MrsKittyFane · 09/04/2012 13:35

Could you let your DH read your OP so that he know how you feel? You sound lovely and you deserve some understanding.

everlong · 09/04/2012 13:36

This reply has been deleted

Message withdrawn at poster's request.

footflapper · 09/04/2012 13:41

I don't think you've said anything offensive! I really don't know what I can say to help though. Are you with the mumsnet group local to your area?

footflapper · 09/04/2012 13:41

I don't think you've said anything offensive! I really don't know what I can say to help though. Are you with the mumsnet group local to your area?

MrsKittyFane · 09/04/2012 13:42

nothing have you phoned/ e-mailed/ joined forum on this?

footflapper · 09/04/2012 13:43

Sorry, thats my mobile phone posting twice

Sarcalogos · 09/04/2012 13:45

Keep going back to the doctor, demand they take you seriously, just painkillers isn't good enough.

It is to your fault. You are not selfish.

Console yourself with knowing that in time your daughter will know damn well who her mother is and will be proud of your strength in dealing with all this.

everlong · 09/04/2012 13:46

This reply has been deleted

Message withdrawn at poster's request.

Sarcalogos · 09/04/2012 13:46

*not your fault, not, not not.

(see Im the stupid one who can't proofread... You can even write in actual sentences...)

cansu · 09/04/2012 13:49

You are absolutely NOT being selfish and ridiculous! I am having a bad day myself (nothing to do with spd) but feel awful for you. I think that whilst the people around you think they are supporting you, they are not supporting you mentally. Is there anyone who can help you communicate what you want from your family? Obviously you need to spend more time with your daughter, with someone on hand to help when necessary. This shouldn't have to mean your daughter being away from you all day. You sound very much like you need a second opinion on your spd. Have you heard of the charity pelvic partnership.org.uk? I don't know if this would be any use to you? You ask what would you do? I think I would:
Move myself downstairs even if that meant having a sofa bed / daybed down there so I am visible and exist outside my room.
Speak to my mother and explain how important it is that I have time with my daughter and that I get a chance to bond with her
Apply for DLA or try to because whilst you are in the state you are in you need help and support
Look into whether there are any support groups for parents with disabilities. Whilst there's every chance you will recover at the moment you are in the same boat and need some bloody company.
PS I am sorry for sounding a bit ranty. I am really pissed off on your behalf that you are being left in such low morale. If I lived closer I would be round myself!

MrsKittyFane · 09/04/2012 13:56

I second OP asking GP for more help. Groups for parents living with chronic pain. People/ groups are out there and they care. You just haven't found them yet.

amicissimma · 09/04/2012 14:01

This reply has been deleted

Message withdrawn at poster's request.

NoMoreMarbles · 09/04/2012 14:04

OP sounds like you are in an impossible situationSad

WWID? I would Park myself in the GPs office until I was referred to a specialist! Call PALS or the equivalent and complain! Those who shout loudest and all that! You CANNOT carry on like this!! Show your DH this thread. You need the support to battle for the care you deserve.

Hope you start to feel better very soon.

nothingsoextraordinary · 09/04/2012 14:09

Thank you for all this support and advice. Very much appreciated.

cansu: Wonderful idea about putting a bed downstairs. Thank you! I wish you lived closer too :) Yes, Pelvic Partnership have recommended a physio I am going to try. I wondered about taking their newsletter into the GP but it seems like an act of war!

Kitty: Will ask about chronic pain groups.

everlong and footflapper: Thank you for the flowers! Will look into mumsnet local.

Sarca: Such a relief to think DD will know who I am in the end, thank you. Had visions of her just totally ignoring me except when her father drags her in here.

OP posts:
potoftea · 09/04/2012 14:29

I've no idea of what you are going through medically so have no suggestions there. But its so clear from your post that you are very clear thinking and see all the problems at the moment and are terribly frustrated that there seems to be no solutions to work towards.

The thing you say about friends not calling--- could you email one with what you said in your opening post. From my point of view if I had a casual friend who was ill like you, I might think they didn't want the bother of me, and would rather whilst ill, to have only their dh and family around as they could be themselves with them. But if I got an open message like that I could then do much more without feeling like I was interfering. I would suggest a friend who isn't as tied with young children if possible.

pinkappleby · 09/04/2012 14:42

Poor you.

I have had a period of bed rest with something that I didn't know if it would get better, impaired mobility and caused severe pain. I had a small baby (my condition was caused by the birth). I set up camp (well my husband got all the stuff) in the living room, I could just about care for the baby, I couldn't hold him other than to lift tiny distances so he got put into the car seat for feeds and then back to playmat. I watched a lot of tv. PC caused pain so didn't do that. Actually baby was content and no adverse effects. Until children are about 2 all they want is attention from an adult and a few toys.

I did however have lots of visitors, I asked people to come and warned of the mess/me lying on the floor and everyone was fine, glad to be asked to come I think.

Have you considered any alternative therapies, I found accupuncture theraputic and I am the world's biggest sceptic of anything like that. I also second trying lots of physios/other types like that who could help, they vary a lot in effectiveness. Once I was on the road to recovery a pilates teacher speeded my recovery significantly and seemed to work magic on me.

Good luck.

ImperialBlether · 09/04/2012 15:49

What an awful problem. I agree that I would park myself in the GP's surgery and not move until I was given an immediate referral.

You know something? Your daughter knew your voice before you were born. You say you have a softer voice than your mum's - it must be lovely for your daughter to hear you. You need to speak firmly to your mum and tell her that you want some time alone with your daughter, without her interrupting or even hearing. Does she have to be in the room with you when your daughter's there? I can't understand how often you see her, but surely your mum doesn't have to be in your face the whole time she's there?

I don't know what SPD is I'm afraid - it sounds incredibly painful. Whereabouts are you?

nothingsoextraordinary · 09/04/2012 17:34

Thank you Imperial and Pinkapple. I'm in Northern Ireland, right up at the top. Pelvic Partnership have recommended a new physio so hopefully that will make a difference. I'll try and reassert my mummyhood with dd. It is an encouragement to think I have the right to do that, which probably sounds very strange! Thanks again.

OP posts:
gafhyb · 09/04/2012 18:02

nothing - your post makes me feel very emotional. You have absolutely nothing to berate yourself yourself for. I am so sorry this has happened to you.

Good luck to you x

fedupofnamechanging · 09/04/2012 19:02

You poor love. I cried, reading your post.

This might be a really stupid idea, but would it be possible for your husband to give up work and look after you and your daughter? He is struggling to stay on top of work and must be desperately missing your baby too. Or for your dd to be in the house with you, perhaps with some paid help - if not full time, then for half of the week. I really feel that she should be with you, rather than your mum, if that's at all possible.

Please keep on badgering the GP for some proper help.

Groovee · 09/04/2012 19:08

I sympathise. I had backache constantly with dd's pregnancy and afterwards and was told it's just your previous back injury. Turns out my pelvis had separated.

Have you had an MRI to check everything? It took me around 2 years to fully recover and I promptly fell pregnant with ds. I saw a physio from day one of that pregnancy. I still get niggles but it is better now.

lashingsofbingeinghere · 09/04/2012 19:20

Massive sympathies. I had post-partum SPD and could not walk at all for 3 weeks so heaven knows how you feel after 7 months! I used to come downstairs on my bum and then park myself on the sofa for the whole day, using a zimmer frame to painfully hobble to the loo. I had a nanny as I also had a 2 year old to look after. No way could I have coped on my own!

I think you need an urgent referral to a specialist, as others have suggested.

FairhairedandFrustrated · 09/04/2012 19:38

When you say NI what county are you in? I'm in NI too and happy to visit/lend an ear xx

BlueFergie · 09/04/2012 20:35

You poor poor thing. Yes absolutely kick up a huge stink at the GP until they refer you. Show them this post. They will refer you just to get rid of you if you become a big enough inconvenience. Do some research first and get an idea of the best specialists around. Specify who you want referring to.
Talk to your mum. Tell her how you are feeling. How grateful you are but how you want the two of you to work together to mind DD but her in a role of facilitating and supporting you to parent as far as possible. If she says your jealous, agree with her. Of course you are who in their right mind wouldn't be? She is doing all the things you should be doing. There is nothing wrong in being jealous that she can do it. She should be sensitive to those feelings you have.
Can you work out a routine with your mum that builds in time alone with DD every few hours. Maybe just cuddling and making funny faces, looking at picture books or baby DVDs? Just for 20 mins or whatever you can manage. Or if you need your mum there that she agrees to sit quietly during this time. Then she can do something with her give her lunch, take her to park whatever and then back to you for another period of mummy time.
I hope things get better for you. Where in NI are you. I am in Dublin but I do go to Newry or Lurgan every now and again. Are you near the border?

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