pregnant and disabled. anybody else??

hello ladies, 

i was just wondering if anybody else out there has a disability and is currently pregnant or trying to concieve? i have encountered all sorts of prejudice and snotty opinions, I've been labelled "selfish" and "stupid" for wanting/having children as I'm disabled people have asked me "how I'm going to cope" and I've even had a midwife phone social services alleging she "had concerns for my babyba  I'm disabled and she believed i wouldn't cope" ( i already had two children by this point and "coped"just fine)  i find it incredibly frustrating sometimes how people judje me based solely on my disabilities and seem to be unable to see my ABILITIES , I'm a strong willed and determined person and have Always refused to let small minded people bring me down but i must admit sometimes it's hard to do. i hate when people feel "sorry" for me and talk to me like im stupid or a child or just plain refuse to speak to me as they "don't know what to say" my disability is physical, there's nothing wrong with my brain!! lol 

i have three beautiful daughters and am so proud of all of them, i am currently nine weeks and  pregnant with my fourth and docotrs aren't particularly happy about me being so adamant that i WILL continue with the pregnancy regarless ,  it will be my last pregnancy as i knowntheres only so much i can put my body through and each pregnancy has left lasting damage to my body which has if I'm honest mad  some parts of my disability worse but i just dontsee why i shouldn't achieve th  things i wan  in life JUST because i have limited abilities. i always wanted a large family an  it's just a dream inrefuse to let go of, I've given up so much else (although begrudgingly lol) why should i not be entitled to this!?!. 

i just wanted to hear your opinions and experiences on how you (or even someone you know) has found pregnancy and motherhood with a disability,particularly the reactions of other people. this pregnancy friends and families first reactions have been "oh no, are you going to be ok" and i find it sooooo annoying, i am happy why can't they be? yes it's going to be a struggle physically getting through the pregnancy but it's MY struggle, the way i see it they either support me or sshut up lol xxxx

Posts

  • Keepthefaith as mother we know what we can handle don't let anyone make you feel like you can't be a good mom because of a disability. I don't have a disability but I have the worst back ever. I've had 6 back surgerys and numerous other procedures. I won't take medicine when preg so people think I'm nuts to put myself through 9 months of pain. I think for some reason that I can handle it better being preg it doesn't seem as bad. Obviously when I'm on my feet all day I was to scream but it will be worth it at the end. People have to much to say sometimes don't pay attention to the ignorance.
  • Good on ya girl I have a disabled friend who has 2 kids n she gets on just fine x

  • I am not physically disabled but suffer from a medical condition that is often grouped as a disability. I must say, it is amazing how as soon as the word "disability" cropped up in my pregnancy, it was treated as a negative by my first mw (who i very quickly asked to be moved from) and I was told all sorts of gibberish how my pregnancy would be closely managed during different stages and I might not be able to go full term or have a normal delivery. 

    My new mw is fabulous, and along with my consultant, wants to keep my pregnancy as "normal" as possible. Amazing what peoples perceptions are....

  • thanks ladies, most days i take with a pinch of salt the small minded wazzocks out there but sometimes it reeeeally gets my goat (maybe hormones and pain) and i wanna give people a whack with my sticks lol. i have spinabifida, scoliosis convex to the left and i have a ruptured l5/s1 disc which puts pressur  on the nerves in my spinal cord, it is excruciatingly painful without pain management as the compression of the nerves affects all of my body meaning i have muscle spasms and my legs sometimes give way. as baby gets bigger it will put more pressure on my spine and as i have severe muscle wastage in my back and legs my spine bears the brunt of that weight, i know it might sound crazy that I'm willing to take risks and i understand people's point of view but when they start calling me "stupid" and judging me based on that it really riles me. i have even been accused of being "selfish" as apparently as someone with a limiting disability i can't run through the park with my kids or do normal things and that apparently means I'm depriving them!! they dont think about or look at the things i CAN do  with them and they love having a ride on my scooter, we are like something out of the hillbillies all piled on haha. i just believe people with disabilities suffer and miss out on enough in life and could do without the small minded A holes out there adding to the everyday torment we already go through.

    ok rant over hehe i love this site as i never feel judjed and everyone is so understanding and supportive  my disability means that one day I'll be in a wheelchair, probably before im forty, so as far as I'm concerned I'm going to do what i want and achieve them while i can and nothing and nobody will stop me image i actually small mindedness should be classed as a disability as surely being that much of a judgemental a hole isn't "normal" eitherimage xxxxx

     

     

     

  • rubbish! My friend can't run thru the park with her kids, she doesn't need to she's got a mobility scooter so she can go much faster! And they love getting a lift to school on it in the morning haha x

  • Keepthefaith how do you manage the pain through your preg my problems aren't as bad but I have 3 ruptured disks arachnoiditus and nerve damage on my right side. Luckily I still function normal just with pain. I only use a heating pad for pain and Tylenol when it gets real bad but it doesn't really help. The fact that your willing to sacrifice being in pain to carry a child says a lot for you don't let anyone take that away from you. People have to much to say screw them image
  • lol lh86 your friend sounds like me, who needs two legs when you have four wheels!! lve had my scooter sprayed candy floss  pink too image  super cool!! haha xxx

    nicole, i usually have morphine (oramorph, oral morphine) amytriptaline, cymbalta (diabetic nerve pain medication to kill the nerve sensitivity) and codiene. I've had all sorts of pain meds over the years including ones that just knock you out (clonazepam) as the pain sometimes can't be controlled even with morphine and being basically made unconcious is all they could do to help me.I've been on antidepressants over the years as living with so much pain on a daily basis, no matter how strong you are can really get on top of you and bring you down. my conditions worsened massively in the last twelve months and im currently undergoing more tests to investigate cauda equina syndrome and arachnoiditis. my pelvis split in my last pregnancy and never went back to normal too. i have to have another mri at twelve weeks to see if i will need surgery which so fa  they've avoided due to the fact my spine is collapsing and degenerative and any result i saw from surgery would last no more than than twelve months and carries an 85_90% chance of leaving me paralysed.if I'm honest most days at the moment i can't see how I'm going to get through this pregnancy as the pain gets so bad it actually has me in tears and throwing up.i cannot sit or stand,it all hurts.I've always been quite tough on myself and refused to allow myself to wallow in self pity more so i dont give the small minded a holes the opportunity to say "i told you so lol" i can realte to you living with a problem with yoir back hun, there's no pain ike it and it affects every single aspect of your life,even the smallest simplest things people without a condition wouldn't even CONSIDER doesn't it. the fact is  i cope because i HAVE to, it's not osmething we have a choice in doing and I'm sure if we did we certainly wouldn't choose this!! 

    how do you find life in pain and pregnant hun? on a day to day basis how do you cope, with your ailments and peoples attitudes towards you? xxxxx

  • I get through the day by counting down hrs sometimes when my backs bad. I kept going to the back room last night at work to get off my feet because at times it feels like snapping in half. I think more people comment the more I want to prove to them that I can do this so go ahead with the negative comments image. You have a lot going on with you I can't imagine how much pain you are in everyday. I'm sending you hug from far away. Pain is the hardest thing to deal with everyday. I thought of going to pain support groups before. My surgeon did a great job on my last back surgery so I do have some relief but nowhere near pain free. I had strange episodes where the pain got so bad at times that I had passed out the hospital said it's your body going into shock to protect itself. Since the last surgery I haven't had that. It was very scary. Have you ever had that happen. At one point they though I had MS because I had a lot of strange things happening I kept saying I'm telling you it's just problems because of my back luckily all test shown no signs of MS. I have a good friend with Ms and she has deteriorated so much in the last 2 yrs it's so scary she is only 36.
  • which form of arachnoiditis do you suffer from hun? I'm currently being investigated for adhesive aracnoiditis and have also had umpteen test in the past for ms as i sometimes suffer a bells palsy wher  one side of my face goes into spasm and the trigeminal nerve becomes compressed and begins to send excruciating electric shocks through my face and head an  literally bring  me to my knees. the first attack i ever had of trigeminal neuralgia i was given brain scans for a brain tumour and suspected ms which was scary but, as terrible as i know this sounds now, i didn't care what the prognosis was as death would bring relief from the  pain and that is literally all I'm able to focus on when it comes. I've been on carbamazepine(tegretol) which is an anti epileptic so try and stop my nerve impulses from going into overdrive but had a massive allergic reaction to this aswell as gabapentin which did the opposite of what itssupposed to do and sen  my nerve receptors into complete overdrive, my last severe attack of trigeminal pain was in november last yr and i was taken to hospital in an ambulance on gas and air and morphine aswell as whatever it was they injected me with (i didn't even care to ask and couldn't as my whole body was in complete spasm from nerve pain) i have been treated for years (the age of twelve) with antidepressants on and off as living everyday with pain can affect the mental state DRASTICALLY!! i tried to take my own life when i was 13 on four separate occasions as the pain was too much. i can honestly say hand on heart that if it weren't for my children I'd have succeeded in suicide by now as it is unbearable to suffer in absolute AGONY everyday,as I'm sure you know, and sometime  the only way out seem  to be the relief of not being here to suffer it anymore. my reason for living, for getting out of bed in th  mornings and somedays the ONLY reason i have to smile is my beautiful children, i think that's how i cope with the pain in pregnancy. i justify it with "I'm gonna hurt pregnant or not pregnant" and at the end of it i get a reason to live!!!  i couldn't ask for more. i usedto get upset when my girls ask me "mummy WHY can't you play tick with us or ride a bike with us?" i felt i was letting them down, but we adjust, it's all we've ever known and i focus on what i CAN  do today and try not to think about what i wont be able to do in the future.hopefully by the time i need a wheel chair my.children will be old enough to understand what's happening to me and it wont be as scary or confusing for them.  if you ever need to talk hun feel free  to drop me a line on her  or by pm, ive never 'met' anyone before with similar problems and it would be nice to share and support image xxxxxx

  • Keepthefaith we have some similar symptoms they originally thought Bell's palsy for me too then ms. I had no lesions on my brain and they have me a spinal tap and I was pretty much cleared of ms. I have had numbing in the face also. The game me gabapetine for the nerve problem but it have me vision problems I had a lot of blurred vision so I stopped taking it. I'm not sure the differences in arachnoiditis I saw it on my MRI chart and had to ask they just told me it's inflammation of the arachnoid lining and it at times can be dabitlitating so they only gave me enough info to scare me.
  • aww i feel ur pain hun, in more ways than one lol. i had bad reactions to gabapentin and tegretol too and had to stop, then they put me on duloxetine (cymbalta) which seemed to be ok, well it didn't make me any worse which is a rarity for me lol. i stopped it the day i got my bfp so not to harm baby. if you ever feel you'd like to read more about the conditon there's an AMAZING article online called "aracnoiditis uk" first time i read it,it was like omg, i could have written this.it was such a relief to have something to relate to. there's also an arachnoiditis support group online which im not a member of but considering joining! I'd never heard of it before i began being investigated for it, i thought i had enough ailmments to be getting on with lol. i hope you get some relief from the pain during your pregnancy hun, i have another mri scan due once ive reached twelve weeks to confirm either aracnoiditis or cauda equina syndrome, possibly both so i shall keep you posted and please,when and if you can find the time would you do the same? image it'll be good to share our pregnancy journey and if u ever need to scream or rant this is deffo the place lol I'm sure there will be times when I'll do the same image xxxx

  • We will def keep in touch I'm sure we aren't the only ones dealing with this too so maybe it can help someone else. I'll have to read that article also. When I saw I have arachnoiditis I thought it was a spider disease lol
  • haha so did i i imagined there being some sort of spider shaped organ or ligament in my spine that had a broken leg or something lol it's name definately doesn't sound as serious as the condition or like it could have such a huge impact on a persons life does it. apparently even the large majority of doctors haven't hear of it as it's quite rare. there's also a lot of conspiracy theories that as it is caused by medical intervention in nearly all cases the doctor's like to keep it hidden even from patients that  the disease for fear of being sued. the other cause (as in my case) is chronic persistent disc rupture which poisons the cerebro spinal fluid in the spinal cord (aka the arcnoid) and damages all of the nerves it's suppose  to protect in the final stage (adhesive arachnoiditis) all of the nerves fuse together and are permanently and irreversibly damaged. if they would hav  operated years ago to decompress the disc rupture it wouldn't ever have happened to me, have you ever had a disc rupture hun or epidural or myelogram(where they put the dye into your back for scan or xray?) these are the causes according to research so it would be interesting to see if it's right. like younsaid there has to be more people suffeing with this out there, are you in the uk hun?  i hope you manage to control the pain during your pregnancy and afterwards too. what is it they have said they'd do for you, i hope they are helping you manage it well xxxx

  • Yea actually I had about 10-15 epidurals and the dr told me it's a big cause of arachnoiditis
  • It sounds like an infected spider bite lolimage not the difficult problem u have to deal with image xxx
  • haha it does doesn't it Samantha, that's what i thought at first or like one of those horror stories where a spider crawls into your ear or skin to lay it's eggs and causes some sort of allergic reaction lol. xxxx

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