What would you do?

[nothingsoextraordinary]

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?

What I would do? Right now I feel like banging some heads together. Not yours, but some professional heads. You need a referral to an occupational therapist who can help you work out how best to manage in the home, an orthopeadic surgeon and a counsellor. And possibly a referral to social services for practical support - the support your mother gives is messing with the bonding between you and your baby as she takes over. You need the kind of support that facilitates.

You are also entitled to a blue badge because it sounds like you cannot walk more than 50m and that to do so would cause you a lot of pain. For the same reason, if there is no indication that this is going to clear up in the next few months you are entitled to Disability Living Allowance.

I work in a Law Centre (a not for profit solicitors collective) in England and we have a Community Care department dealing with cases as yours. It is worth finding if there is similar. It may not be the obvious route to go legal, but solicitors can force the authorities to take responsibilities.

Thank you madmouse. I will try again since you think it's worth it. The OT said 'Look, there's nothing I can do. We only help with your toileting and personal needs etc. And do try and take care of your baby. You'll never get these days back.' She did give me a bath seat which is great though. The GP said I will never get a blue badge and there's nothing he can do because he doesn't make the rules (In NI any pregnancy-related condition is an automatic no for that). Social services batted us between adult and child for a while before saying that families should be self-reliant and they have no help to offer until we run out of savings, when there might be a place at a nursery available for dd. My dad has just been diagnosed with Parkinsons, so it's not even as if my mum should be a full-time nanny either because he needs her. I can look into a counsellor but with the GP, social services and OT all apparently thinking I secretly don't want to be able to walk and carry the baby, I'm afraid to show any sign of mental weakness. The GP has pointed out there's nothing the matter with my arms and I don't use my pelvis to lift. That whole side of things made it all a lot harder emotionally and I suppose I'd drawn a blank and withdrawn from it.

Seeing that your baby is 7 months it is time to stop calling it a pregnancy related condition. I had SPD and it was gone by magic despite a horrid delivery. Worse cases than mine can take a while to clear but even my friend who was on crutches during her pregnancy and had a blue badge (so it is possible ) was ok after a few months.

Sounds like you could do worse than starting with a new GP. Nothing wrong with your arms fair enough, but until you've had SPD you have no idea what you use your pelvis for.

Madmouse - thanks for your reply. The GPs only know spd as a pregnancy-related condition, so that's their term and they're sticking to it. I've tried five different doctors in the same practice, with the same result. One lady doctor has a sister on bedrest waiting to give birth by C-section, so she does know how bad it can be - she hadn't been aware that it didn't always get better, though. Nearly every woman recovers quickly, no matter how severe it is to begin with. I'm very unlucky in that respect but by no means the only person in this boat. Northern Ireland is a bad place to have the condition though, because their rules about awarding a blue badge are particularly sticky, and they have no disabled parents charity (that I or any GP has aware of).

is aware of sorry :)

Get on the phone to a chiropractor!

Also look at changing your bed,

but get thee to the chiropractor first and let them have a good look

Try and find a MacTimony one.

Ok, why can´t baby be in the room with you?

You can use your arms and I am sorry to give you a bit of a kick, But I have a sever Back injury and I do mean Sever (ie, permanent Crutches, wheel chair), Epilepsy and a couple of other things going, it is NOT easy BUT you can spend time with DD, and you CAN get better.

GP practice not being any USE; MOVE!!!

Yes, move practices - in the same practice they just look at each other's notes. It is bonkers to have a woman 7 months after childbirth unable to move and call it a pregnancy related condition.

mummyinspain - I've been there done it with two osteopaths, both experts in the field. There's a possibility that physio will help though. Baby can be in the room with me in theory, but she is active and busy, and is screaming blue murder after a short period on my bed. I have to let my mum take her out if it's what the baby clearly is happiest doing.

Ladies, thank you for your words. On the strength of it I've written a letter of complaint to the GP...perhaps something will change. Much appreciated.

i had spd with both of my pregnancies and occupational therapy at the hospital made me a custom made elasticated 'brace'. It helped so much to support my hips and back and took the strain off my pubic area. I was so bad at times i couldnt walk, get in and out bath, any scissor action with legs.

I wore the brace round my lower stomache and top of hips. it helped so much. i had a caesarian because of the condition, but i had to electit myself. i was glad i did, a friend of a friend pregnant and birthing at the same time as me had a normal delivery and her pubic ligament was so damaged it snapped when she gave birth. She had to go to the next city for physio for a while and walk with crutches for some time.

Could your ligament be damaged/ripped holding your pubic bone together? Have you been scanned?

Listen - I'm to go for another MRI and see what comes out of that. I'm glad you are doing better now. Sometimes I wear a Serola belt which sounds a bit like your brace. Nice of OT to make it!

Hopefully another MRI will show the condition of the ligament you're talking about. Scary though...

mummysinspain - I really appreciate your encouragment. Sounds like you're having a really rough time and I admire the way you're dealing with it. My problem is the pubic symphysis joint, without which the whole body is unstable. She'll always be my daughter, but I may not be able to hold her any time soon. However, you'll be glad to know I sent a formal letter of complaint to my surgery today. Once they recover from the shock of actually being complained about, they might just be better if we ever try and go for a next time.

If you can't change you situation you have to change your responce to the situation. I have multiple spinal fractures in my neck, torso and lower back.

I have two in the region of my shoulder joints meaning my arms are unstable, I have two in my lower back and tow near my hips, I am also due another MRI where they are expecting at least 2 if not 3 more, the pressure applied to the spine from the exsisting fractured vertebre causes other "normal" veterea to shatter.

YOu would be amazed at how "normal" you can be if you are prepared to throw any sort of preconception out of the window and look for unusal soultions.

Firstly chriopractors and Osteropaths are not the same thing so it may be worth seeing trying a chiropractor.

How are you in water? I find I have greater movement and flexability in water than out. Can you find a water babies class locally they tend to have the water warm and being "weightless" may give you and DD some special time together.

Are you doing phsio? If so get DD involved in a game so she and you are participating together at getting you better.

Lastly best piece of advise I ever got

"depress is a abnormal response to normal circumstances, not a NORMAL responce to abnormal circumstances" of course you are miserable but you have to be part of the solution, Stop thinking I can't do that, and start thinking I can't do that that way but i could do this.........

PS. well done re the complaint and be prepared to take it further.

Thanks mummyinspain. I really take your point and would appreciate more information about how you have dealt with a situation that seems very challenging to someone on the outside. For example, how you are managing with feeding, naps, socialising baby, getting to the swimming pool and getting in and out. Water can work both ways with me at the moment - short term pain relief but the greater instability can lead to pain afterwards. However I'd love to follow your lead and perhaps there are solutions I could draw on. Doing physio but scared to do too much and aggravate the inflammation further.
Thanks also for that great quote.x

BE THE SQUEAKY WHEEL. You have to keep bothering the doctors even if it goes against your nature. Cry, wail and gnash teeth if you have to. I broke my pelvis in two places a couple of years ago and it took 6 months to finally get it diagnosed ( it was a non-displaced fracture so didn't show up on X-rays). I had to push for the MRI that finally diagnosed it. Don't underestimate the amount that pelvic dysfunction can affect your entire body. I never even thought of my pelvis until this happened and now I think about it every single day (two years later). I will never take for granted again the ability to put on trousers, sit without pain, walk my children to school, get out of the car without assistance. I cannot imagine having to do all this with a new baby (mine were 8, 5 and 3 when it happened).

Good Luck and Unmumsnetty hugs X Keep us posted.

I can't help but think that the key to you getting what you need is to get rid of this ridiculous 'pregnancy related' label as it simply no longer is!

messyterrier - lol, thank you for that. I'm encouraged that you are better again. Like you, had never had a clue about the pelvis until now.

madmouse - I agree about the pregnancy related label. Hopefully the letter of complaint will do something. Will let you know!

Ok, I will rake my brains and come back latter with some blow by blow this is how I did stuff (DD is now 4) and I have been like this since 2003. My way of doing things may NOT work for you, but it MAY prompt some thoughts about things that would work for you.

Thanks!

Ok, here goes,

Feeding, I breast feed for the first 3 months and then combined feed (had no option as I had lost so much blood during birth and was so badly anemic) The best solution I found, was a hgh backed chair, foot rest, and a Chair with arms. Then LOTs of pillows, you want to prop, wedge and general surround your self into a position that means baby is at a good height, to Feed and your arms are secure. ALSO I used a Pillow to feed baby on, so when she went to sleep after a feed she could be picked up and moved (Normally by someone else)

Nappy Changing, I tried lots of different combinations but had differing levels of sucess, I found crutches very hard to use when trying to change a nappy. We brought a high (I'm tall) baby changin unit with a baby bath as well and lots of front facing pockets, we then removed the changing mat and replaced it with like this one Meaning that if I had a fit DD was safe, and if I needed to keep one hand in my crutches I could. The we put the baby changing unit in the hall. Which meant that DD was on the changing mat and I could wedge my back on the wall behind. Also fixed the changing mat to the wall, and put in grab rails.

When DD got a bit older we installed a set of steps so she could "walk" up to changed.

The changing unit was the same height as my pram, which meant I could sort of slide DD over onto it.

Naps, I had a pram I used as a mosses basket for the first 3 months, and then we co-slept for the next 2 years, ok word about cosleep if you have a seizure disorder which causes night fits, it can be done, but MUST be done dafely for DD. we cheated, I used bed gaurds and 2 single beds, DD bed was against the wall, and between the two we fitted a modified bed side, which meant that I could after feeding flip the rail up, and DD was totally safe from a fit.
When she was in a cot for aboout 3 months, we wedged, lifted, prompt the matteress upto just below the hight of the sides, as I could not reach in any lower, then we blocked the feet up making the cot the right waist height for me.

Ok, I will come back to anyquestions and to post part 2!

Thank you so much Mummyinspain. There is a lot here to think about. I'll get back with any questions and look forward to part 2!

Hope your day has gone well.x