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See all MNHQ comments on this thread

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:
missmalteser · 09/04/2012 20:45

Oh Op this is such a sad post I had spd when pg and it was hell I can't imagine dealing with that plus a newborn, I am also in NI and if I am close enough would also be available to chat, pop in etc, pls pm me if you would like to talk, at the minute I think everyone needs to focus on supporting you while helping you care for your dd not taking over and leaving you helplessly watching on, please do not give up hope expressing your feeling and asking for help is a great first step x

maytheoddsbeeverinyourfavour · 09/04/2012 20:45

Nothingsoextraordinary, I know just how you feel because I am in exactly the same position

I am completely disabled because of SPD and have been for some time, I hope I can help a bit, do you have any specific questions?

How is your pain relief? Constant severe pain is incredibly awful and would make anyone feel depressed, there are lots of options available though. I am still experimenting to find the right combination but at the moment I have morphine patches amongst other things and they do give me some relief. I've also started having injections into my pelvis so I'm hoping they may help a little

Also we have had to change our whole lives to accommodate my disability, I'd be happy to chat about how if it might help?

Hang in there , I know it's awful but there is help available

CremeEggThief · 09/04/2012 21:07

I really, really feel for you, without knowing what you are going through. I second the advice of going to see a specialist, as the G.P. should be more supportive than that.
Is there any way your mum could actually live with you for a while, as surely that would facilitate the much-needed contact with your DD (who I'm sure knows you as Mummy)?
Also, get a sofa bed and reach out to your friends, neighbours and acquaintances. Let them know you are up for company.
Please keep posting and let us know how you are getting on.
Thanks

hoppinalong · 09/04/2012 21:23

Seasonal name change for another reason.

I had appalling SPD before and after DS2. Without wanting to be derogatory about your current problems, exercise sorts out SPD in many cases. Pilates is brilliant.

Please try to find an hour a week to learn what it can do to solve the problem. After that all you have to do is practice the same thing at home.

It isn't the solution to everyone's experience of SPD, but it worked well for me and a couple of people I know.

kumquatsarethelonelyfruit · 09/04/2012 21:28

I heard of someone who cured their SPD by accupuncture. Might be worth a try? But I agree with others that going to a physio specifically trained in SPD is your best bet. Don't forget you will still have lots of the hormones floating round in your body that caused the SPD in the first place. Also, are you breast feeding? Do you think that might make it worse?

Whereabouts in NI are you from? I am originally from there and might know someone in your area.

lycheejelly · 09/04/2012 21:30

I had chronic SPD when I was pregnant and for the first year or so after my DD was born. I was also told it would get better after my baby was born and found it very difficult to get help beforehand. Initially I pushed my GP for a referral to physio. I saw 3 different NHS physios and they made very little difference.

The thing that turned my situation around was finding an amazing physio who did manual therapy as well as giving me loads of exercises to do (starting with v basic pelvic floor stuff and moving on to re-learning how to walk). I really hope your physio you have found through the pelvic partnership can help you. If not it is worth asking them for another recommendation. I can't explain the difference it made to my life. I couldn't pick up my DD when she was one, and I know how heartbreaking it is. However I can now and she is twice the weight! I guess what I am trying to say is that for me it has been a long haul, but things have improved dramatically. I really hope the same is true for you and please do persevere with finding a physio who can help. I wish I lived closer so I could be more help. Do pm me if you want.

kumquatsarethelonelyfruit · 09/04/2012 21:31

Another thought - did you have a section with your DD (due to SPD)? It may have affected your bonding process. I have had SPD in both my pregnancies and had two sections. It takes a while IMO for the babies to feel like 'yours' (especially in your case). Reclaim your daughter! You made her, she is all yours and believe me, she adores you! (You just can't tell that yet!)

eggkr · 09/04/2012 21:42

I had spd with last 2 pg but luckily went off afterwards but i know the pain its awfull.
Have you tried osteopathy?
You need to insist on a referal too,the related to pregnancy excuse is ridiculous.
You have done a good thing posting on here,it will hopefully empower you to seek the help you deserve.

maytheoddsbeeverinyourfavour · 09/04/2012 21:48

Exercise can indeed be very beneficial, but please get proper advice on your individual case first

In my case I am wheelchair bound and cannot do any exercise without making things worse, although SPD is fairly common, each persons experience of it can vary wildly. There is a lot of thought that in cases of extreme SPD there might be an underlying condition so it's very important to be properly assessed

Have you had an MRI or bone scan yet op? They can really help, I'm my case I felt I was taken much more seriously after my MRI showed there was structural damage to my pelvis due to the SPD

WheresMrMonkey · 09/04/2012 22:03

Just wish I could do something to help, but wanted to let you know I'm thinking of you x

DollyWobbler · 09/04/2012 22:06

Your post made me cry too, how awful for you. My heart goes out to you. I had a baby eight months ago so can relate.

Please remember that you are her Mummy and NOBODY can take that away from you.

I am thinking of you and hope that you get some help soon xx

ATruthUniversallyAcknowledged · 09/04/2012 22:19

You poor thing. I have no experience of spd, but I do have a seven month old and it breaks my heart to think of how I would feel if I couldn't play with him or be with him in the way you describe.

Please, print out your OP. Take a copy to your GP (so that you dont have to verbalise it) and refuse to leave until they give you a proper referral for both the spd and for pnd. There has to be something that will help you.

If you feel it would help, show DH and DM too. I normally think showing family members an MN post is a recipe for disaster, but here you have explained so well how you are feeling that I suspect it may help them to help you.

Most of all, be kind to yourself.

maytheoddsbeeverinyourfavour · 09/04/2012 22:20

Sorry to keep popping in, but I keep thinking of things I want to say!

I also have a baby, he's a little older than your dd op, I also have other children. I know how incredibly frustrating it is to have to sit back and watch other people do the practical stuff, but the emotional side is just as important. I am often stuck in bed for days on end, but it's still me my children come to when they're hurt or upset, I read with them, help with homework, watch cbeebies, cuddle and chat with them, I am still their mummy and they still need me, no one can replace me and no one can replace you in the eyes of your lo

My lovely DH has made our bedroom a little haven for me as I'm in it so much, I have a tv, digital channels, DVD player laptop etc and the children love to spend time with me there. Maybe there are some little things that would make your life a little better?

If you can try to get in contact with the occupational therapists if you have them where you are, they came to my house and have given me some aids and adaptions that have helped me so much, it's amazing how small things can make a huge difference

TheUnsinkableTitanic · 09/04/2012 22:29

i'm in omagh and regularly goto derry for work
please let me know if anything i can do for you

please don't be hard on yourself - you are having a rough time and need to get more help

i too would recommend acupuncture

hathorinareddress · 09/04/2012 22:32

nothingsoextraordinary - have pm'd you

spendthrift · 09/04/2012 22:47

You poor thing.

My family has been bed bound one way and another on and off for ages. Our lessons, for what it's worth, are

Bed down stairs

Thermos full of hot drink made in morning by dh/me

Get one of those insulated cups with lids

Bed table/lap top table to go over bed
without pressing on you

Radio and laptop

Sets of keys for nice neighbours and best friends

Dh/me to ask friends to organise rota of people to pop in

Friends to do the sorts of things they like doing, for you. One of ours loves gardening so she kept our front garden tidy. Another is v stylish so I was able to ask her to get me some cosmetics.

I rang friends of dh to get them to take him round for a drink to get him out and give him something to think about.

A tens machine , which I found useless in labour but useful distraction later when morphine not enough.

If you can move at all, with your arms, something to do. It sounds silly but embroidery, knitting etc will give you something else to think about. Can you knit for dc? Or is there a charity you could support by knitting or crocheting? Could you do a baby sampler for dc?

Pens and paper and books and magazines.

Get you mother to come round at regular times with dc.

Really feel for you.

MavisG · 09/04/2012 23:18

Tunbridge Wells Osteopath - Quentin. You need to see him. PM me if you need help with the logistics, but you have to see him. I was driven nearly insane by spd & the isolation. No bugger knowing how to treat it. Friends disappearing & depression exacerbating that. Gah. He saved my sanity.

MavisG · 09/04/2012 23:20

Oh shit you already did, didn't you? Didn't help?

nothingsoextraordinary · 10/04/2012 22:23

Thank you for the messages. I can't tell you how much.

amici, lashings and nomoremarbles - Dug deep and wrote a letter of complaint/requests for referrals. Thanks for the push.

potoftea - What you suggested about emailing casual friends. Do you think there's a risk of guilt tripping people into visiting?

Fairheaded - Thanks so much! I'm in Antrim.

Groovee - That sounds quite similar - who knew these things could happen! I've requested an MRI.

gaf and karma - Thanks for caring! Was wondering about a mother's help. Tricky to pay for! DH would give up work if he could.

OP posts:
Angelico · 10/04/2012 23:28

PMed you OP. For anyone else in NI - there is a physio in Coleraine called Janice Allen who does a lot of pelvic stuff - works in Causeway too if you can get referred but can be seen privately at Milburn Complementary Therapy Clinic (think it is Wed morning). PM me if you can't find them / need the number.

And your GP sounds worse than useless. NI can be so crap at times (and so great at others).

Angelico · 10/04/2012 23:31

Link here.

nothingsoextraordinary · 10/04/2012 23:53

bluefergie&spendthrift - thank you for those suggestions. We have been given a raised play area so a little bit of eye contact each day will be easier.

maytheodds - I will message you. Hope that's ok.

Dolly and Monkey, Cremegg, Malteser, atruthuniversally - Thanks for your kindness. Malteser I will message you, thank you for that.

MavisG and eggkr- Yes I've tried a lot of osteopathy without much success so far. Mavis, he seems a bit stumped, to be honest.

unsinkable - We're not so near your neck of the woods but I will remember that, thanks!

lychee, kumquats, hoppinalon - Haven't tried acupuncture but just starting down specialist physio road now. It's good to know it usually helps. The exercises are quite difficult to do just at the moment with the inflammation. I'm also seeing a surgeon so we'll see...

OP posts:
nothingsoextraordinary · 11/04/2012 00:18

Forgot to say, anyone who was kind enough to ask whereabouts we are in NI - Portstewart.

OP posts:
potoftea · 11/04/2012 11:27

nothingsoextraordinary you ask do I think you could be guilting people into visiting.
Well I think you probably know that some people aren't really friends you can call on in tough times, they just don't know how to cope.
But you probably have other people in your wider circle who are happy to help someone in need and I think just looking at the replys you have had here you can see that most people are willing to reach out. People who have young children are often too overwhelmed with life to be able to take someone's problems on board, but older children leave more time and energy to get involved with other things.

KatMumsnet · 11/04/2012 12:16

Hi there, we've moved this thread into General Health.