Parenting Forums

Posted: 01 October 2006 at 2:59pm | IP Logged

Good afternoon everyone.  Just wondering how many other mummies out there in the madmums community have disabilities and how you are coping.  As some of you know, I have, and still am having a bad flare-up of hypermobility ehlers-danlos syndrome.  I have had my home specially adapted, I am no longer at work, and on Tuesday I discovered that I now have Osteoarthritis of the spine.  My husband also has a severe back problem and has been warned that he could end up in a wheelchair.

The good thing, though, is that Lewis is beginning to learn things our way, he can now climb up the stairs, with either myself or my husband behind him, although he is carried down the stairs.  We have a chest of drawers downstairs which has his changing mat on so that we dont have to bend and Lewis has learned not to move whilst on it!!! 

I thought it would be hard, but Lewis learns as we do, so we are all still adapting and he's young enough so that it will become second nature to him that it takes mummy and daddy a bit longer to do things. 

The one thing I'm still not happy about, and I really need to get over it cos its never gonna go away, is that my house is starting to look like a nursing home, I have one of those high-backed chairs - it is really comfortable for me - and I have had to put foam around my cutlery and my toothbrush so that I can grip them properly.  Other than that we are trying to get on with things and I really love being there for Lewis, watching him develop and grow.  He's changing every day and every day he does something new!!! Awww, don't you just love 'em!!!!!

Posted: 01 October 2006 at 3:11pm | IP Logged

Hi Funchick, you are not alone and it's great to hear how others cope with what life throws at them.  Keith and I also both live with disabilities.  I am still working full time which some days can be a real struggle.  I have Ulcerative Colitis which not only gives me days where I live in the bathroom but I also suffer from severe joint pain, mostly in my hands and knees.  I take medication to help my bowel not get inflamed.  I suffer from severe mouth ulcers also to the extent that sometimes I can not eat or drink let alone speak.  I mostly try not to let it affect my working life but they are pretty good and apart from a few comments from ignorant people that is ok.  Keith can not use his left arm very much and carrying Ols can be a problem.

Kids are so adaptable, Ols also climbs the stairs himself with us behind him.  We have all his changing stuff downstairs on a box and he even says "stay" when we put him on it as he knows he isn't allowed to roll off. 

I find pushing the pram the most painful thing for my hands as gripping it isn't very comfortable.  Not sure how to get around this one though, how do you find pushing a buggy?

I think mostly my kids keep me going, on the days when I would rather not go to work I think of them and why I am going to work, which is to provide for my family.  One smile from any of them makes it all worthwhile.

Hope you are not in too much pain.

Posted: 01 October 2006 at 3:28pm | IP Logged

Hi sam

When I'm not pushing the buggy, I have to walk with crutches, I am hopefully getting new ones - the ones that look like ski poles as at the moment I have crutches with cumfy handles - but they not that cumfy!!!  I also wear hand and wrist supports, that were issued to me by my Occupational Therapist, and wear those when pushing the buggy and they give me a bit of support.  I do sypathise alot with you, hand and knee pain is horrendous, like you want to chop them off - though you would do badly without them!!!!

If it wasn't for my husband and my son, I would be wallowing is self-pity, but they are keeping me going, that and being maxed-out on painkillers everyday!!  Life is definately worth living and I'm not ready to give up without a fight just yet!!! Pain-free hugs to you all xxxxx

Posted: 01 October 2006 at 6:56pm | IP Logged

Do you have problems gripping things?  This is the thing that I probably find most frustrating, gripping things like the buggy for me is very painful.  I have wrist supports but it doesn't help my actual hands and fingers that hurt the most.  I try not to take the painkillers I have as they make me feel woosey.  I did cut down on the medication for my bowel which helped reduce the joint pain.  There is another older medication I could take but as I am still breastfeeding I can not take it at the moment.  My GI says once I stop messing about with babies she will be able to help more lol.

Oh well life goes on and like you say no point in wallowing in self pity.

Posted: 01 October 2006 at 7:18pm | IP Logged

OMG yeah!!!!  Gripping things is a big problem, I have foam pipe lagging wrapped around my cutlery and my toothbrush!!!  My fingers get sooo sore, like yours, and some days I cant even hold a pen.  My handwriting looks like scrawl now and I find putting my hands in water - as hot as you can stand it - for a couple of minutes helps a little bit.  However, not a solution if you're out and about!!!

I just take every day as it comes and try to rest when I can, if that is possible!!

The most frustrating is if I need to go out and take Lewis and the bus isnt easy-access.  Being disabled AND having a buggy and getting on an old banger is my idea of hell - especially if the driver is Polish and doesnt understand a word that you are saying - and the other passengers just look at you and sit there like stuffed ducks!!!  I thought having a bus pass would give me more freedom - and its just the opposite.  The bus company know me on first-name terms as I've complained so much - but still nothing is done about it!!

Sorry to rant - OMG I really let off steam there lol Do you have any rants about unsympathetic people and situations?

Posted: 01 October 2006 at 7:28pm | IP Logged

funchick i met a lovely lady last week at toddler grp who has a 14 month old and she was saying shes been in a wheelchair since she gave birth

she didnt say what was the poblem but she cannot walk and her dh came to collect her

she was lovely and said she takes things a day at a time

her lo was v clever and knew where to stand so mummy could pick her up

it makes my moans seems so petty

Posted: 01 October 2006 at 7:35pm | IP Logged

I feel really embarrassed for ranting there    because there is always someone worse off than yourself - and I keep telling myself that every day!  I really shouldn't moan at all as I am very lucky to have what I have.

Just need to keep positive and keep normality for as long as I can!!!

Posted: 01 October 2006 at 7:55pm | IP Logged

I am so glad that I do not have to cope with public transport, I don't think I would go out if I did.  Lifting the pram in and out of the back of the car is painful but I just get on with it.  Keith can help with one arm lol you have to laugh sometimes.

Yes there is always someone somewhere worse of than you are but it doesn't always make it feel easier.

I think my biggest gripe is getting around the shops with a buggy which I am sure every mother has a problem with.  Trying to move out of the way of people that are ignorant with the buggy when you have sore hands isn't my idea of fun.  Oh and toilet ques because there are not enough public toiltets.  I have a card that says I need to go to the toilet urgently so please get out of the way, you are meant to be able to show it in any big department store or public toilet and it's meant to save embaressment.  I have never used it because I would die of embaressment, I normally drag one of the kids with me and blame them for needing urgently lol.

I try not to think about the future at all.  I know all the things that could happen to me with my illness in the future but I can't afford to sit and wait for that to happen otherwise life would pass me by.  I do what I can now before I become ill again or need surgery again.  I figure I am really no worse off than anyone else because who knows what is around the corner for anyone.

Posted: 02 October 2006 at 9:16am | IP Logged

Hey Nikki. It sounds like Lewis is doing really well hun!

I am not 'offically' disabled but my spd means I am very limited in what I can do. I cannot drive because sitting in one postition and having to move my legs independently is painful and I sometimes gets cramps and spasms which is dangerous.

Edward can go up and downstairs on his own and is so good we dont always have to follow him now. I do still change him on the floor but struggle to get up. DP does bath time most nights as I struggle to lean over the bath to wash him.

I find life can be very lonely as I struggle to leave the house. I also have to nag dp to do housework for me like hoovering as I cant do it. I hate that as I am supposed to be the 'housewife' and yet I cant keep the house as clean as I'd like to.

However I am getting better at the moment. My chiropracter is great and has really helped me move on. I have slowly been able to start walking further and I may even be able to restart my driving lessons soon.

Posted: 08 October 2006 at 2:13pm | IP Logged

Hi everyone,

I just want to say thank you for all of you support - most important, however, is that we are all here to support each other, and there has never been a time where there has been lack of support - which is truly fantastic!!

Maddy - hunny, pain-free hugs to you darlin, my thoughts are with you as I have some of those dilemmas too hunny and if you need a chat sometime - hey I'm around. xxxxx

I'm sure with the support of friends and family and our own determination, we will get through this no problem.  Thanks for listening peeps xxxx

Nikki xxxx