Any other disabled mums-to-be?

[ShadowRat]

Hey ladies

Whilst I was in First Tri, there was a thread going about disabled mums-to-be. It has sort of died out now, it seems, and I was just wondering whether we have many disabled mummies here in second tri now?
It'd be great to see how we're all getting on whilst we're getting bigger, how it is affecting things, plans we're making for when baby comes etc. I know that I've still not quite managed to get my head around the whole dog, baby, wheelchair scenario, but I think OH and I are hoping to get a sling for me to have baby with me in the wheelchair and also maybe a backpack-carrier thing for OH to have him when he gets too big for the sling.

I'd love to hear from others in a similar boat!


Shadow xx

 

[overcomer79]

Well, I am not quite in the same boat as you but am considered disabled. I am legally blind but I guess I am doing ok.

 

[Jemma_x]

Im considered disabled due to my epilepsy, my pregnancy has been really hard and i know when bubs arrives it is going to be hard and im going to worry so much when im alone incase i have a fit but thankfully with help of my OH, mum and dad things shouldnt be to bad and i shouldnt be alone very often.

 

[Nanaki]

I'm deaf here and I am in disabled category It will be hard for me when my baby gets here because of noises it'll make like wants feeding etc. But will get baby alert from Social Services soon as midwife get things sort out for me.

 

[ShadowRat]

Hey ladies nice to meet you all! (OC, nice to re-meet you! Hehehe)

I'm deaf here and I am in disabled category It will be hard for me when my baby gets here because of noises it'll make like wants feeding etc. But will get baby alert from Social Services soon as midwife get things sort out for me.

That sounds interesting, the baby alert thing, what is it?
I find the one good thing about being properly registered disabled is the help that can be available. I really don't know where I'd be if OH wasn't home full time as my carer, I don't imagine for a second that I'd be able to have kids...

Jemma, do you fit regularly honey? I had an epileptic friend a few years back, but he hadn't fitted in a few years I think, but I'm not sure if that was better for him or worse: He would always worry that, as it had been so long, he was bound to have one again soon! Do you have full-time help at home? I guess you'd have to be very careful with things like bathing baby whilst home alone, just in case? May I ask, do you think your pregnancy has been particularly hard because of the epilepsy, or just generally a tricky pregnancy? I guess it would be hard to know the difference really!

Ooooh, Nanaki, I hope you don't mind me asking this but I am really curous: Do you wonder about whether your baby will be deaf too? Do you think it would be easier for you to bond if you had a deaf child, or do you hope for your child to have hearing?

ladies! Nice to find you all!

Shadow xx

 

[Gabrielle]

Awe, I've never seen this thread. I give you all big props for starting families! Not that i don't believe you can't do it but i know things can be harder. HUGS>

Shadow..if you don't mind me asking..how come your in a wheelchair...i guess i never knew that?

 

[ShadowRat]

Hey Gabs! Nice to see you honey!

I have Ehlers-Danlos Syndrome, it's a semi-rare connective tissue disorder, pretty much means that I get nasty arthritis-type pains (and other pains) in any and all of my joints, which makes walking very difficult sometimes, and also that I have VERY loose joints which spontaneously dislocate any time they feel like it
OH has to reset me when I "pop out" (unless it's a wrist or a finger or a jaw joint, which I can do myself )

I think if I could rely better on my shoulders, for example, then life would be a LOT easier, as I could use crutches more often and avoid the wheelchair! But my hips are the worst really, and have flared up massively during pregnancy *rolls eyes*

xx

 

[babystar]

Hiya I am not in 2nd tri till nxt week so I hope I am not indruding much. I am disabled..although not in the same boat as you. I suffer from psoriatic arthritis, benign joint hypermobility syndrome and M.E.

Because of my joint probs...esp my hips I was induced with Elinor and I see my special care midwife at my nxt hosptial appointment on June 4th to talk over my special care labour wise and after birth for this pregnancy.

to you all

 

[babystar]

"VERY loose joints which spontaneously dislocate any time they feel like it "

shadow me too! It is part of the benign joint hypermobility syndrome... my wrists do it... my hips too and my shoulders. Its a pain in the ass to say the least!

 

[Gabrielle]

Oh Shadow it sounds painful...HUGS> but you seem to be dealing with it very well and positive about it all! Glad your OH is helpful too! So do you always use a wheelchair or do you get up and walk around..? Sorry for the ?;s...

 

[ShadowRat]

lol hehe Gabs, ask away, I wouldn't have started a thread about it all if I wasn't happy to chat about it!

I only use a wheelchair when I have to, which is pretty much when we leave the house. It has only got to that point in the last year, though: Before that I could manage much better on crutches every now and then and just "pacing" as much as possible. These days the combination of everything makes it just that much harder, so I do use the wheelchair more often.

Babystar, you are not intruding at ALL my love!! How is first tri treating you? I think you'd find that we have an awful lot in common in terms of our conditions: The mix of ME, BJHS and arthritis pretty much add up to the same thing as EDS anyway, I'd say! I'll bet if we compared symptoms, we'd be amazed at how similar our bodies are hehe...
Can I ask, Babystar, have you found that your hips have been particularly bad in first tri?? Mine sure were, LOTS looser (especially Scaro-Iliac joints) but they have somewhat calmed down a bit in second tri. I think Relaxin hormone levels are high in first tri, then they come down a little in second (GOOD news for you honey!!) and then flare up again in the final stages of pregnancy.

Shadow x

 

[babystar]

yessss they are real bad just now.. and I am finding they are seizing up more etc. They did that the last preg too. And like you said they were alot better 2nd tri and then 3rd tri they went downhill again.

I use a walking stick most of the time as my right hip is the worst... you see it popping in and out as I walk... But I am out and about alot with the buggy and so I use that as a kind of frame too haha.

OH works one day a week and is classed as my full time carer so I do get to rest up if and when I need to. I am finding with the M.E that this pregnancy is really draining me so far. But I am optomisitc that things will improve and also that things will not stop me from enjoying this pregnancy

 

[Mumof42009]

I had a bad RTA when i was younger which resulted in me having pins and rods in my back this has now left me with a curved spine. I get terrible backache and sometimes find the pain very hard to deal with sometimes my back goes completely numb this is down to lack of nerves i have in my back,its going to affect me more in 3rd tri with the weight of bubs.
Its good youve started this post xx

 

[ShadowRat]

Yes, I'd imagine the ME would be a real energy-zapper during pregnancy
I get energy issues too with the EDS, but lately I am starting to wonder whether there might be more to it: Does diabetes come with low-energy-level warnings?? I'm getting the GTT done this Sunday, but have for a long time had many diabetic symptoms... Although maybe it is all just tied up with EDS, I don't know! The thing about conditions like EDS and ME is that doctors tend to say "oh, that'll just be another symptom of your condition" quite often when something "new" occurs! I mean, of course, sometimes it IS just that, but then sometimes things can get missed for people like is, I find!

May I ask, also, Babystar: Are they very certain of your diagnoses? I only ask because I have more than a few friends now diagnosed with EDS who were previously misdiagnosed with BJHS, ME or both: Do you have very soft/stretchy skin? Or any kind of dizziness symptoms / low blood pressure at all? That was what changed the diagnosis for many of the EDS people I know.

Hope everyone is well at the mo, and enjoying pregnancy so far despite any extra little complications life is throwing your way!

Shadow x x

 

[ShadowRat]

I had a bad RTA when i was younger which resulted in me having pins and rods in my back this has now left me with a curved spine. I get terrible backache and sometimes find the pain very hard to deal with sometimes my back goes completely numb this is down to lack of nerves i have in my back,its going to affect me more in 3rd tri with the weight of bubs.
Its good youve started this post xx

Ugh, I hear ya, honey... Weight gain in third tri is going to be an interesting one for me, too! I've already "slowed down" a lot during second trimester!

xxx

 

[babystar]

As far as I have been told that is my diagnosis. I dont have low blood pressure etc its more just the joint troubles and the over tiredness and flu like symptoms when the M.E takes a bad turn.

 

[ShadowRat]

Ah, cool, sounds like they've got you in the right "box" then hehehe!
It is quite subtle, though, I think, the difference between these conditions!
Apparently lots of EDS sufferers have blue sclerae (whites of their eyes) but I don't! I wouldn't want to be a geneticist or diagnostician for a living, that's for sure!

 

[Nanaki]

Hey ladies nice to meet you all! (OC, nice to re-meet you! Hehehe)

I'm deaf here and I am in disabled category It will be hard for me when my baby gets here because of noises it'll make like wants feeding etc. But will get baby alert from Social Services soon as midwife get things sort out for me.

That sounds interesting, the baby alert thing, what is it?

Ooooh, Nanaki, I hope you don't mind me asking this but I am really curous: Do you wonder about whether your baby will be deaf too? Do you think it would be easier for you to bond if you had a deaf child, or do you hope for your child to have hearing?

Shadow xx

The baby alert is a device that can alert me to the baby's cries day and night. I have a pager that vibrating because I cant hear a thing around the house or door or phone etc.

I dot mind either, Deaf or Hearing. My family all are hearing, myself and my hubby are deaf. Only his twin brother also deaf and his cousin hard if hearing. If I have a deaf child I would be happy but the important thing is baby's health! I will have loads of supports from both families as they have bee thru hard time with us being deaf as a child years ago.

xxx

 

[mordino]

Hey there! I only just saw this and I just had to post! I am not in the 2nd trimester yet but very soon!

I am deaf too. I have a daughter who is 4 and she is hearing, so is my hubby. I was born profoundly deaf and I use sign language as well. I am expecting our second baby in November. I am so excited!!!

 

[Armywife]

I have been wondering whether or not to post in here as after reading your posts i feel like maybe i am a little under qualified to post. I appologise if i am!

I have congenital scoliosis, a curvature of my spine which causes a lot of pain at the best of times including almost constant sciatica. I was diagnosed with SPD at 12 weeks but have been suffering from around week 8. The loosening of my muscles due to the Relaxin has lessened the support of my spine even more. I struggle to do a lot of things at the moment hubby even has to bend my legs for me some nights and help me dress etc. I can't get out of the bath alone and getting up and down stairs is a nightmare - usually done on my bottom.

I'm not registered as disabled and i hope you ladies don't mind me posting x x x