parenting with mobility and pain issues...

[Sanguine]

So, anybody got good tips for a new mum? I've got Ehlers Danlos Syndrome (hypermobility type). I have problems with dislocating joints all over, but in particular I have a narky pelvis that hasn't forgiven me for getting pregnant. I had revolting SPD and although it's better than it was I'm still struggling with mobility. I'm also finding that baby care is really hard on my hands and wrists. My wrists pop out every time I pick up the boy, and my fingers are really struggling with things like poppers. My LO is now 15 weeks and getting heavier by the day, I'm accumulating injuries accordingly.

I'd be interested to hear experiences of how to juggle crutches/sticks and baby, also of how best to go about simple baby care tasks like dressing or nappy changing when your hands aren't really working. Can you get baby clothes that don't have poppers, for example? I'd also like to know how people manage the pain in practical terms. I'm thrilled to bits with my lovely baby, I'm just keen to go about things properly so I'm not grinding my body into the ground.

Bumping for you

Congratulations on the birth of your baby boy

Firstly, congratulations!

FWIW, I don't really have much constructive advice. I have EDS III too and I found the first few weeks after the birth to be very hard. I had help close at hand from my mother, which was a godsend.

Like you, I was on crutches with my pregnancy, although it was my hips that were dislocating (which, in turn, gave me horrible pelvic and back pain) and I have problems with my wrist and thumb joints.

I found that after a few months, things got a little easier (perhaps as the Relaxin gets out of our systems after the birth?) and I was able to get off the crutches. As for the pain, I managed quite well (I hate taking pain relief, and have quite a high tolerance). Sleep whenever you can, rest your joints and see about getting some help around the house (a cleaner, someone to do laundry/ironing etc) so that you can concentrate on the important (and much more fun!) task of looking after your wee boy.

Can you ask to see a physio? I'm pregnant again and already having quite a few problems. The physio has been fabulous and recommended Pilates as a way of building up and strengthening
muscles without taxing the joints. I'm having one-to-one classes and I've found them really helpful.

Other than that, I can only say that I sympathise and understand - been there, done that, wearing the t-shirt. Everyone's symptoms are different and only you know what you can cope with.

I'm happy to answer any questions you might have, so feel free to ask me.

I don't know the details of your condition but I have a chronic and painful rheumatic disease which mainly affects my spine and pelvic joints although also affects other joints eg wrists, knees, shoulders...

I can tell you the things I did/have done/am doing to help (my DS is 21months):

Get as much help as you can - we've ended up with an au pair but we have no nearby family. If you are in Homestart area they may be able to help.

Put baby in an extra t-shirt rather than a popper vest.

Move everything you need for day time baby care downstairs. e.g. changing station. Put it at a height which is comfortable. Put the cot up on bricks so you don't have to bend so low to baby.

Buy a hippychick hip seat and wear it when carrying baby - this distributes the baby's weight much more effectively.

Get a referral to your community occupational therapist who can come and make adaptations to your home to help. Mine arranged various things e.g. making my front step in to a ramp to help with the pushchair, getting a ramp made for the car to push the pushchair in to it without having to lift it etc.

Get someone else to bath baby.

Invest in a low chair/stool to enable you to play with your baby on the floor rather than having to sit on the floor. A toddler's chair would be good for this and in time your child can use it.

I'm sure some will tell me it is unsafe but it worked for us: I had DS baby gym on a blanket on the dining table hemmed in by the dining chairs so that I was picking him up/putting him down/playing with him at waist height until he rolled - fortunately for me this was very late at 10 months!

Leave the car seat in the car so you are only lifting the weight of the baby. if you need to transfer it to the travel system have a look around you and ask a stranger - dads are good. Don't be embaressed just say "please can you help me, I have painful joints and can't lift my baby seat". I do this LOADS and 99% of the time people are very willing to help.

Go to a physio and ask them to show you what position to do things in so that you stabilise your joints e.g. changing a nappy/using the car seat/pushing the pram - I had a brilliant physio who just by showing me different positions in which to do things really helped me.

In time:
Use a booster seat with tray rather than a high chair as this is easier for lifting baby in to/out of. Also it's not too long until they can be trained to climb in to it.

As soon as possible teach your child to climb the stairs by themselves and to come down backwards.

Get them in to a bed early as they can climb in/get out without you lifting.

Get a rotating car seat which puts much less stress on your pelvis getting the child in to. And in time they can learn to climb in to it themselves.

But the biggest single thing that will help is not being too proud to accept help. Save yourself for the fun bits e.g. playing but wherever possible get someone else to lift. So at clinic ask the HV to lift. When you have friends round ask them. When in town ask a passerby. People are normally very willing to help if you ask, but would be embaressed to assume.

Hope that helps a bit and good luck!

I echo Weegle about asking for help. I'm pretty much on feet up/bed rest for this pregnancy and I've not been shy about asking for help from family!

We're just about to put our son (who's eighteen months) into a bed, so I don't have to lift him in and out of a cot. My mother and brother help with bathing him and we taught him to go up and down the stairs as soon as we could.

Looking after him got easier as soon as he could walk a little

Thanks everyone, there's some really good stuff there. I always knew that it would be physically hard work, but I suppose I rather naively thought of babies as not very heavy, and failed to appreciate that very quickly they start to weigh more than a stone. Currently my wrists and thumbs are completely dislocating about 6 times a day, I can't seem to keep the flippin things in place. I've had to go back to crutches which is a blow as I was doing so well. I was seeing a physio but I've been discharged. I'm pretty well coached in core stability/pilates exercises after many years of physio for this condition. In fact, when it came to giving birth, LO just kept bouncing off my pelvic floor muscles, and had to be ventoused to get past them!

I have a cot top changer and that helps enormously. I also put LO's baby gym on our bed so that I can sit there and play with him. Unfortunately our families are some way away so they aren't around to help

jscot - I completely sympathize with your EDS pregnancy predicament. I can only begin to imagine what it would be like to go through all that again with a toddler tearing about the place. When I was pregnant, I started out with SPD pain at 15 weeks. By 20 weeks I couldn't walk without crutches, and by 28 weeks I was in a wheelchair. By the time I was due, it was all I could do to get from the bed to the sofa in our little flat! I hope it goes well for you and you aren't in too much pain.

Hi Sanguine - congrats on your little boy!

How brave of you to go through with this, my cousing has EDS and has decided not to have lo's which is a shame but I understand it as I have recently decided not to go ahead with TTC number 3 as I don't want to deteriorate further.

I have a chronic pain condition and can recommend Pilates to help build up muscles which in turn will help to negate the dislocations - my cousin does 2 hours of exercise every day and is managing quite well now.

Since I've been doing Pilates I am off my sticks and can now stand in a queue for more than 5 minutes so it does work for all joint problems.

Hope you

Hi,

I don't have the same condition as you, but have had mobility problems from birth due to malformewd joints, with awkward hands and fingers. I found ds quite a challenge in those first few months.

I couldn't carry him any distance at all, and used his pushchair all the time, around the house, and to get him just from the front door to the car, a whole 3 or 4 yards. If you have bought a good pram or pushchair (I got a very expensive Mamas Papas model, as it was the only one I could manage the catches on to fold/unfold) it may give you enough support without needing the crutches.

I also gave in when he was about 4 months, and put in a stairlift, so I could get him up and down stairs safely, on my lap.

As soon as he could crawl I had to find a very mentally alert joiner, to fit stair gates for me around the stairlift track.

The biggest challenges were the things no one else thionks about. Who the hell invented car seat buckles that have to be held together while you clip them in? I used to cry with frustration at fastening in a wriggling baby.

I know it's difficult to ask for help, I'd always been so independant, and wanted to prove that I could meet this challenge as I had all my previous ones. But eventually I got used to accosting strangers in car parks to help lift the pushchair into the boot (which used to get me if I was really tired).

You will find it hard for the first few months. I had a setback with a broken hip when ds was 3, just as I had thought things were getting easier, and that depressed me for a while, but now ds is 8, and we have a wonderful time together.

Hi - found this thread really helpful as i am disabled by chronic pain and arthritis/mobility problems. Have found fiddly straps. poppers etc total nightmare (ditto jars) and have found all tips useful/ wish I had the guts to ask people to help me with more than just opening doors but find even this hard - I tend to avoid going out when too unwell to manage alone. I do find other people's attitudes hard to take - everything from dirty looks when parking in disabled bay with young kids (despite having badge), to general narkiness when I ask for help in shops etc. I really hate being a disabled parent although would hate not being a parent more!, I want to be able to play in the park with my kids but don't as don't like being watched while struggling. that sounds pathetic which I'm not but I do avoid some situations with my kids because the contast between what I can do, and what everyone does with ease is so big.
I wish I knew other mothers in similar situation.

where do you live, girlymomma?

hi clumsymum - we live in sussex - how about you?

oh, in Nottingham, so a fair distance away I'm afraid.

Take a look at the disabled parents network, maybe there is a group near you?

whereabouts in sussex? I am on the Kent/W Sussex/Surrey border and have similar issues to yours...

I also get the odd dirty look when parking in disabled bay - mainly from older people who think that a 31 year old woman with a baby can't possibly be disabled. It only bothers me sometimes. One lady strode up to me on the bus the other day and gave me a dirty look because I was in the "please give up this seat for the elderly or disabled" seat. She opened her mouth, spotted the crutches, then ran away and hid!

I also really hate having to ask for help, but I'm getting better at it. Having a baby has been such an education in "needs must"! One thing though, my little boy looks at me with such adoration, it completely banishes any feelings of low self esteem I may be harbouring at the time!

OK, grrr. small rant follows.

People got used to seeing me on crutches / in wheelchair when I was pg, and I very patiently explained to each and every one who asked me what the problem was. Now I have a baby, and in consequence, a pushchair. I also sometimes move about carrying the baby because, quite frankly, I have to. And yes, sometimes the pain is horrid, but that's a different story. People keep rushing up to me to tell me how wonderful it is that i am "better". Now, the SPD has improved, but still hurts like hell sometimes, and the EDS that was always there is (not surprisingly) still there, and being exacerbated by all the lifting etc. So last night when I went out to the ascension day service at church, I took my stick (in the absence of buggy to lean on) and was assailed by many cries of "Oh, what have you done to yourself now?"

IT'S PERMANENT, PEOPLE!!!

rant over.

Sanguine, you have my empathy as I wish that people would realise too. I have my Xplory which is my walking frame but if, in the unlikely event that I do go out without the DSs then I too have a stick and have had comments - it does get rather boring doesn't it?

I'm thinking of making t-shirts with yes I am young, yes I have kids, yes I am disabled....with "got a problem with that?" written on the back!!!
I had severe SPD, crutches wheelchair couldn't walk, sound familiar ladies?!? Three years on I am still in constant pain, have wear and tear along my pelvis and now my coccyx is literally a pain in the arse! But I have 2 gorgeous boys, they were both heavy and still are, one is 3 in a couple of weeks and my youngest is 9.5 months. I get fed up of the looks and stares too, and I feel guilty that I can't do things with my boys that other mums can do. I sometimes feel I am a lousy mum, and I hope my boys will understand. It's amazing what we put ourselves through, people think you are well, my so called friend told me to get out more socially of an evening at the weekend, said I', turning into a hermit, but without the pushchair (my walking frame) I looked pissed because I am walking all over the place, I am in pain all the time, so I know I would be exhausted and in agony. SIGH SIGH SIGH!!!!!! MOAN MOAN MOAN!!!! Ah, that's better now, got it off my chest x

Hi all.
Although its unlikely that any of you will have what I have (rare form of muscular dystrophy -miyoshi's/dysferlinopathy...anyone...?), I'm looking for suggestions/stories from people who have handled mobility problems and being pregnant. My leg muscles are severely wasted, but I do walk with a stick. I can't do a stair without handrailing and using both my arms to pull up. I have periods (I think its when a new bit of muscle has departed) where my balance is awful and I fall a lot. At the moment I am pretty good; haven't fallen in ages and am slow and obviously weak in the legs (and arms to a lesser degree) but steady and I feel good. I have benefitted a lot over the years (I'm 31) from swimming, pilates, yoga, acupuncture, and my core strength is good. Perhaps someone with balance issues may be able to help? I'm concerned about the change in centre of gravity as I gain weight - for all I know I could be fine because my balance is so rubbish that I'm used to compensating and being careful, but equally I am aware that there is a chance that I may not be able to walk at all as I gain weight and then not until after the baby is born (touch wood). I'm also expecting my knees and ankles which are very weak and wobbly to be under a lot of pressure, as well as hips.
Has anyone been in this situation and if so what things would you suggest to look out for or that helped you? I am not in a yoga or any other class at the moment because of the cost of one to one sessions and I am intimidated by the thought of joining an unmodified class and having to pass on half of the exercises. My local NHS rehab clinic is as useful as a chocolate teapot, have tried them several times and been frustrated. I'm feeling positive but need to be realistic and prepared if things get very much harder as theres a good chance they will.
All the posts here are very interesting; I can relate to a lot of it and its very encouraging to read other peoples ways of handling the chaos of life with chronic illness.

Polony, firstly congratulations on being pregnant. It can be daunting, but so worth it (says PP who now has 2 DSs)

I would suggest you ask your midwife to refer you to the obstetric physio which should be attached to the hospital where you're likely to have the baby. These are physios who are specifically trained in dealing with problems arising during and after pregnancy and you should be seen pretty quickly with your medical history.

I have bad balance and walk with a stick if I'm out without my pushchair - which was recommended by my physio at the JR in Oxford (Stokke Xplory - absolutely fantastic walking frame as Sanguine will testify). When I was pg with DS1 I was issued with crutches which helped with my centre of balance when I was walking around, especially outside; I also tried to limit the number of times I climbed stairs then.

I also did aquanatal during my first pregnancy and this certainly helped me feel better and keep [vaguely] fit.

Good luck

Thanks, I'll follow all that up. I have to confess that having read yours and Sanguine's and walking up the hill the other day I was wondering if getting an xplory pregnant or no wouldn't be a good idea...
How early on did you start the aquanatal? I'm 9 weeks and still a bit sick to feel like getting about much but am also craving some exercise (my body is all kinds of contradictions just now). I like the idea of it because I think I could do that all through the pregnancy (again, touch wood) etc even if I end up in a wheelchair.

I'd be lying if I said I wasn't scared about having a baby - theres the feeling of something bigger and harder than I can comprehend on its way, for all that I feel warm and happy and that this is how I want it to be. I've spent years thinking about how I'd manage a small child when the time came. You lot are impressive.

Sorry, Polony, this is the second time I've tried to reply, my laptop ran out of juice and shut down on me last time!

I started aquanatal in my final trimester with DS1 as it wasn't available over the summer holidays here (was completely unavailable when I was pg with DS2 though), but I think it would be worth you talking to your midwife about when you can start it as you might be able to start sooner.

I'm sure that you will find ways of coping both now and when the baby arrives, but don't be afraid to ask for help from your DH/DP, relatives and medical professionals. I know that my DH can get a bit frustrated that I don't ask for enough help on occasion so I still have things to learn!

So pleased to have found this thread. I have a form of muscular dystrophy, CMT, and four dcs, the youngest of which is 2, so I can empathise with loads of the difficulties faced here.
Like you Polony, I need a handrail to go up and down stairs and found a baby sling, one of the really simple fleece ones that you just slip them into, a fantastic help to lug baby around. You don't notice their weight as much either.
As far as pregnancy goes, by the time I got to nine months with my last baby I hardly had the strength to walk across the room. Although I am pretty wobbly, I don't think pregnancy affected that very much, it was mainly just the added weight that my leg muscles couldn't cope with. To be honest I was absolutely terrified that my body wouldn't recover after the baby and I'd done myself lasting damage.
Amazingly just a day after having him I was leaping about (well leaping in my terms anyway). The transformation was nothing short of miraculous.
For me, pregnancy has always been the worst bit of having a baby. The births have been okay 'cos I'm used to dealing with pain and fatigue and just gritting my teeth, and looking after the babies has had its challenges but to be honest, when you're disabled you get pretty good at working out your own solutions don't you?

Hi. I can see that no one has posted here for a while, but heres hoping. I am newly disabled (is that a term used?) Well what I mean is a now have a diagnosis. I have limb deformities, and OA.This causes me to have mobility problems and pain. I am due to have 2 or 3 lots of major surgery, starting in a few weeks, and am scared of how I will cope with not being in control. I try not to be too dependent, sometimes I have to give in though!!! But post op I will be totally dependent for months. I dont want my children to become dependent on someone else. I too have had dirty looks from people when I park in the disabled bays. Do they really think I want to park there?? FFS!!!
Sorry to rant!!

Sorry I have no advice but you mentioned poppers and these have zips instead:
www.barnyardkids.co.uk/index.php?main_page=index&cPath=1

I wish I'd known about Mumsnet when I was pregnant. Got RA, which flared up as soon as I gave birth and could hardly walk. Tried breasfeeding but was really difficult to position with arthritic hands and a fused wrist, and having had a caesarian - nearly decked the military midwife who refused to let me have a nipple shield! Coped with night time feeds by buying a small kettle, and taking all I needed (SMA, bottle and a jug) upstairs at night so I could warm it up without having to go back down. Was advised to get 4 door car but having tried one, stuck to a 2-door because doors open wider and you don't have to lift the baby into the carseat - you can get right in the car while carrying them which is much easier. ALWAYS asked for help (at supermarkets someone always put kids in the trolley for me coz I couldn't lift them high enough for long enough to get them in) - people usually love to be asked: as in the Blur song, it 'gives them an enormous sense of wellbeing'!!!