Looking for parents of young children

c4thyg

Hi everyone,

I'm wondering how many of you have young children and how do you cope on a day to day basis?

I have a 2 year old daughter who is my world but at the same time also the trigger for me getting arthritis and other immune problems. I find it very hard to keep going and look after her. During flair ups my hubby has to take time off work to look after her. I just lost my job through ill health (which I'm actually relieved about for now) but the down side is that I can't afford to pay for nursery for much longer. She is in nursery 3 days a week for now as I'm using our savings. In short, I simply can't cope with an active toddler on my own. I'm waiting to get Humira which I'm hoping is going to be a wonder drug as I'm running out of options.

Do any of you have any coping strategies for dealing with toddlers without them missing out too much? I would love to chat to others who understand my difficulties as my family do what they can but don't 'get it' because they've never experienced it. My hubby is great but he is struggling to juggle things. I need to find a way to take some of the strain without making myself worse. My daughter is very well behaved (for her age) and very caring but I worry that she is missing out because of my limitations. I hate to admit that she watches tv for me to have a rest in the day. I try to make sure she watches suitable things but really she wants to be outside running wild. How does everyone else do it?

Thanks for letting me get that off my chest. Cathy xx

suzster

i have a 2 and a half year old and i know what you mean, my RA came along not long after she was born, i think one good thing is they only know us as we are, i also have a 10 yr old who has known me as an active fun loving mum, adventurous and she gets very frustrated and annoyed because i can't do as much anymore.
i often worry my 2 yr old isn't getting as much out of life as she could with a more mobile mum, especially as i brought up my eldest alone and we were always out and about, going to the park, long walks etc.

it is hard and i think support from other mums in this situation is important, but apart from on here i have not met any other mums with RA, which always seems odd as they say it's common for RA to come after having children, so where are these others?!!!

we have been discussing having a part of the forum just for parents or even starting a web site just for parents both of which could be helpful, as i know sometimes i wish i could ask another mum (or parent!!) how they deal with certain things.
i know the worst thing when my youngest sarah was a tiny baby, was nappy changing, dressing, who invented poppers? they are so hard to do up and undo with bad hands! and holding her, when my hands were really bad i struggled to hold her and had to resort to laying her on a pillow to bottle feed her.
sorry, i have gone on a bit!!

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hi cathy and suzster
i have a 2yr old too, and a 13yr old.
i also work in a playgroup part time with 30 2-4yr olds i am starting to find it quite differcuit some days but dont want to give it up, my daughter loves it there i dont have to pay for her and i get payed for being there, perfect but then came arthur
anyway just added Mxt to the drugs list so hoping this will help me and not give me nasty side effects.
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suziev

hi

am a mum of 2 kids and have ra, your not alone it's not easy though.
with regard to childcare i don't know the ins and out's but social services maybe able to help with reguard to funded places at nursey you would have to look into it but i know that this can happen.
and the plan is a web site for us mums so watch this space
suzie x

c4thyg

Thx for the replies.

I know what you mean about nappy changing. My daughter is getting too heavy for me to lift now. She has learnt to stand up for me to pick her up which helps a bit.

I'll ask my health visitor next time I see her about nursery places. She doesn't get the free sessions until Jan next year and I really need something now. It's odd but there seems to be plenty of support and awareness for parents of disabled children but very little for disabled parents. It's not even as if I made the choice to have a baby when I was disabled because pregnancy was the trigger. In fact I have consciously decided not to have any more because I don't feel like I can cope. I just don't know where to turn and I hope that my daughter doesn't resent me later on.

suzster

it's horrible feeling like that but you are not alone, although i know it can feel that way, there is very little support considering RA is often brought on by pregnancy, hv should help more i think!

c4thyg

suzster wrote:

it is hard and i think support from other mums in this situation is important, but apart from on here i have not met any other mums with RA, which always seems odd as they say it's common for RA to come after having children, so where are these others?!!!

I think the reason we don't meet other mums is because we are all at home trying our best just to get through the day with as few pain killers as possible. I'm trying to get to know other mums at a toddler group but I've only made it once because I've either been too ill, had a hospital appointment or couldn't face it because my self-confidence is totally shot. Also the invisible disability is hard because I always have to explain to people that I'm not being lazy but I have to be careful not to injure myself. I also have a blood clotting condition where my blood doesn't clot so the slightest injury could mean a major bleed and a transfusion. Again it's an invisible illness therefore it can't exist. Sometimes I feel like i need to carry a billboard of explanations with me. This type of condition is very isolating and lonely. Unfortunately it means that it's isolating for my daughter as well as she's an only child.

woodbon

Hello I don't have children - not because of arther, its something else I had many years ago, but I do know a bit about looking after them, as I've had a friends children for 4 years when she had to work. I don't know how you manage :shock: I'm sure I'd need to lie down in dark room after a couple of hours with little ones now.

So just want to say I'm full of admiration for all you girls and boys, out there who are trying to manage. I hope families and friends help you and you get understanding from schools and playgroups.
Love Sue

katekelly

I had my 2 eldest pre-arthur days and my youngest 7 years after I was diagnosed. It wasn't easy and was worried particularly about things I had done with the older ones that I couldn't do with the youngest (bike rides, rolling about on the floor, playing catch etc you know the sort of things I mean). I spoke to the HV about this and as she said my little one won't miss what she never had. So to make up for this I give her lots of love and cuddles, I spend as much time with her as possible and we have found other things to do that I didn't do with her sisters. Being a disabled parent isn't easy but it is just as rewarding if not more so than being a parent without a disability. Every day is a struggle but when you go to bed just congratulate yourself on all the things you have achieved during the day rather than beat yourself up about the things you haven't. You are doing a fab job- don't let anyone tell you otherwise.

mistywillow

katekelly wrote:

I had my 2 eldest pre-arthur days and my youngest 7 years after I was diagnosed. It wasn't easy and was worried particularly about things I had done with the older ones that I couldn't do with the youngest (bike rides, rolling about on the floor, playing catch etc you know the sort of things I mean). I spoke to the HV about this and as she said my little one won't miss what she never had. So to make up for this I give her lots of love and cuddles, I spend as much time with her as possible and we have found other things to do that I didn't do with her sisters. Being a disabled parent isn't easy but it is just as rewarding if not more so than being a parent without a disability. Every day is a struggle but when you go to bed just congratulate yourself on all the things you have achieved during the day rather than beat yourself up about the things you haven't. You are
doing a fab job- don't let anyone tell you otherwise.

Hi all you mums
I just wanted to say be proud of yourselves for coping with your little ones despite being in so much pain and having to struggle with things that other mums take for granted. Thankfully my RA didnt kick off big time until my daughters were grown up. I really feel for you all, I just cant imagine how hard it must be to deal with the demands of a small child and arthur.
Gillx

c4thyg

Thx for all the support.

It seems that there has just been one thing after another since my daughter was born. Before i get to grips with one thing the next lands in my lap, the most recent is an autoimmune disease that we thought was leukaemia. :shock: Turns out that the symptoms are the same but my immune system destroys my blood instead of cancer. And like with arthritis, there's no cure. It means that I can't take my trusted anti-inflammatories without the threat of a brain bleed. I felt so isolated thinking that I was the only person going through this that I had a breakdown a few months ago and then got fired 2 weeks ago because I was off sick for too long. I'm starting to get back on track on but I can't help think what is going to be next. These are only the last 6 months events, there are 2 years worth before this!!

My health visitor has tried to help and I have a homestart volunteer who comes around once a week. I'm still not sure if it'll be a big help but I'm willing to give it a go. The only other support I have is my parents and even then my mother is severely disabled and really needs me. I'm going to ask the HV about nursery places and if they are available before the child is 3. She'll be 3 in Oct so she's not far off. Fingers crossed.

ramummy

Hi there, I was diagnosed with sero+ RA in Oct last year shortly after the birth of my son. He's ten months now and my daughter is nearly 4 years old. I have all the same fears, and worries and feelings of guilt that you do - I don't want to be less of a Mummy just because I have RA. Fortunately, thanks to 15mg MTX, lots of prednisolone and diclofenic my RA is pretty well controlled - I joined a gym this week as I'm feeling that good! I realise that I'm one of the lucky ones though and I really hope the Humira does the trick for you.

My daughter seems to be be benefiting from my having RA as she has a lot of compassion for poorly people - she'll often ask me if my 'wrist is feeling poorly today' and when I have to wear my wrist splints she likes to wear a little tubigrip on her wrist too so we match! Bless her.

Dealing with the baby comes with its own challenges - especially once they get mobile! Mine has just gone into the next size up car seat and with my bad wrists I really struggle to get him out of the car - it seems like such a simple thing but it's not! Fiddling about with tiny milk powder scoops and poppers and sticky bits on nappies and stair gates also gets my goat!

My husband also had trouble coming to terms with my diagnosis - not surprisingly, it;s tough knowing you're going to have to deal with a chronic condition when you're diagnosed young - I was only 32 so he must have wondered what kind of an old biddy he was going to end up with!

Feel free to PM me anytime - I know where you're coming from!

x

c4thyg

RAMummy, we sound like we have had similar experiences. I was 29 when I was diagnosed. I'm glad the drug combo works for you, that can make such a difference. I felt like a different person on Lodine and didn't realise how hard it was until I took it. Of course, now I'm not able to take anti-inflams for other reasons and I'm looking to Humira.

I understand what you mean about car seats. DD is too heavy for me to lift in now so I've had to teach her how to get in herself. It's fine so long as the car isn't too dirty and it's not raining!! The hardest part though is buckling her up and adjusting the straps so that she is safe.

My DD also seems to have a compassionate side to her. Always kissing me better and saying she'll take me to the doctor. She tries to 'fix' my hands with sticky tape because they are 'broken'!! She already wants to be a Dr when she's big. But as much as I love her, I'm glad that she's asleep now so I can put my swollen ankle up.

suzster

carseats and pushchair straps get me to, i really struggle doing them up and undoing them.
as for poppers, milk scoops and stuff, i swear the people that make these items never think that we might fid them fiddley, they are made for 'normal' hands!!!
my daughter is now 2 and a half so i've been through the tough baby times but as they get older there are always new obsticles!!
please feel free to ask if you have any problems and if i'm been through them i'm happy to help if i can.

c4thyg

suzster wrote:

carseats and pushchair straps get me to, i really struggle doing them up and undoing them.
as for poppers, milk scoops and stuff, i swear the people that make these items never think that we might fid them fiddley, they are made for 'normal' hands!!!
my daughter is now 2 and a half so i've been through the tough baby times but as they get older there are always new obsticles!!
please feel free to ask if you have any problems and if i'm been through them i'm happy to help if i can.

Thx Suzster. My daughter is the same age as yours so maybe we can share tips as we discover them. I can't wait until she is potty trained so I don't have to lift her onto her table. I change her on her bed but of course have to be careful if it's messy!!
I'm dreading her out growing her nap time. I need it more than she does!!

suzster

[/quote]Thx Suzster. My daughter is the same age as yours so maybe we can share tips as we discover them. I can't wait until she is potty trained so I don't have to lift her onto her table. I change her on her bed but of course have to be careful if it's messy!!
I'm dreading her out growing her nap time. I need it more than she does!![/quote]


oh yes nap time, i'm dreading her stopping that to!
as for potty training, sarah shows no interest in that, it would be easier than changing nappies, so i hope she starts taking an interset soon!!i have to change her on the bed to, but what i find a real struggle is when we are out as most changing rooms in shops etc have the changing area so high up, so it starts with me struggling to get her up there, then sarah starts panicing as i don't think she likes heights, so she will then grab hold of any part of me she can, usually a big bit of my skin!
i'm trying to encourage her to lift her legs up as trying to grab her legs, lift them up and sort the nappy is a nightmare!!! but as i'm trying to encouage her to lirt hers legs i forget to keep hold a bit and she seems to always kick me, by accident, but oh it hurts!!
i remember when she was tiny i really struggled lifting her legs up to change her nappy, now as she gets bigger it's even harder!!

c4thyg

Suzster, I find that by tickling Meg behind her knees or on the side of her bottom she relaxes and naturally lifts herself up allowing me to get the nappy under her. I've never tried this with another child so I don't know if it works with anyone else. Nowadays I just say 'bum up' and she does it for me!! She does try her best to help.

suncatcher

Hi i have a young child of 4 and i have struggled. I did put him down for free places at 2 but was too ill to take him so with drew application and play groups i missed loads of sessions in winter as dont drive or had anyone to take him for me and people thought i was a bad mom as i dont look diabled. so when i was better i took him to the light house and did a course and the crech was only a pound if i did a course or 350 if you didnt there are only 5 centres in the midlands and ive heard they are pulling away funding so 31 people may lose jobs sich a shame and a life line for me and son.
I used to nap when he naped and when he stopped his fase of napping he was used to his vidio hour and is today so i rest but dont sleep and he is next door and have door open so i can hear him. I take him to wackys and i am there knackered but he is happy and hairing around
I am more sorted with meds now adays so life is better than those bad early days when i was isolated and in pain I was very late potty training as i could not manage to get him on pot or toilet they gave me my first sterod then i was able to do that but my health visiter was vile to me and i told hospital and they give me steroid. the heath perso thought i was not ill evern tho i told her i had ra she told me it was tuff but you have to get on with it she shouted at me. and told me to run grab son and pick him up and put him on pot. I tryed to tell her i struggled withstairs and back hurt and she said it was rubbish. after i had steroid i went to docters and she spyed me takeing son now potty trained over to the toilet of course the steroid had worked brilliantly and i bet she thought i was making it all up and still probably does ignorant cow
any way look out for good equipment and if you have support get help i had none. only hopital that is why they were nominated for an nrass award i hope you have good hospital care and they get your meds working for you and you will get more energy back a bit
have you a home start by you this is a charity who support moms with kids under 5 i was out the area but they are apparently excellant and also i hope you have a good health visiter she may suggest things in the area. sorry for going on all the best joanne

suzster

we have no health visitor, she left last year and the one that covers us is impossible to get hold of, we never had a 2 yr check, in fact i haven't seen a health visitor since sarah was 2 , last feb.
i took sarah to a thing called gym minis yesterday, it's obstacle type course for 2 + yr olds. sarah loved it but i had to explain that i could not help sarah do alot of the climbing due to arthur, the staff were very good but it wasn't just sarah who was shattered afterwards! it's every thursday and costs £4.80 per session, not cheap, but i'll try to keep taking her as she loved it and slept for 3 hours after!!!
sarah is due to start pre school in september but i am worried about getting her there. she will have 2 morning sessions a week 8.45am until 11.45am, much as i know it will do her good to mix with other children i really am uncertain as to how to get her there. it's a 20 min walk, on a good day then i have to walk back home and back later, i don't drive either so i'm kind of hoping maybe i can get help from other mums? but we'll see!
btw, i really appreciate talkjing to you and getting some advice, thank you!
sue

janie68

joanneprice wrote:

Hi i have a young child of 4 and i have struggled. I did put him down for free places at 2 but was too ill to take him so with drew application and play groups i missed loads of sessions in winter as dont drive or had anyone to take him for me and people thought i was a bad mom as i dont look diabled. so when i was better i took him to the light house and did a course and the crech was only a pound if i did a course or 350 if you didnt there are only 5 centres in the midlands and ive heard they are pulling away funding so 31 people may lose jobs sich a shame and a life line for me and son.
I used to nap when he naped and when he stopped his fase of napping he was used to his vidio hour and is today so i rest but dont sleep and he is next door and have door open so i can hear him. I take him to wackys and i am there knackered but he is happy and hairing around
I am more sorted with meds now adays so life is better than those bad early days when i was isolated and in pain I was very late potty training as i could not manage to get him on pot or toilet they gave me my first sterod then i was able to do that but my health visiter was vile to me and i told hospital and they give me steroid. the heath perso thought i was not ill evern tho i told her i had ra she told me it was tuff but you have to get on with it she shouted at me. and told me to run grab son and pick him up and put him on pot. I tryed to tell her i struggled withstairs and back hurt and she said it was rubbish. after i had steroid i went to docters and she spyed me takeing son now potty trained over to the toilet of course the steroid had worked brilliantly and i bet she thought i was making it all up and still probably does ignorant cow
any way look out for good equipment and if you have support get help i had none. only hopital that is why they were nominated for an nrass award i hope you have good hospital care and they get your meds working for you and you will get more energy back a bit
have you a home start by you this is a charity who support moms with kids under 5 i was out the area but they are apparently excellant and also i hope you have a good health visiter she may suggest things in the area. sorry for going on all the best joanne

Hi
You should have complained about the health visitor, they are no way allowed to speak to you in that manner. Just complain about her although it would have to be a formal complaint for them to do anything. Ask the gp surgery that she is attached to who her line manager is and get in touch in them.

I would never speak to patients like that

Janie :x

c4thyg

I do have a HomeStart volunteer who is helping me to get my confidence back and go out places. It's early days so I'm not sure yet how helpful it is but it is nice to have friendly company from someone who understands my limitations. I don't have to hide that I'm in pain or feel bad about not playing football. I have to admit that the hardest thing for me is the loneliness that goes with this. I've lost my job and find it hard to go out places. I cried in toddlers this week because I felt so lonely. It's hard to join in with the dancing and playing and I tend to force myself so that I don't look lazy. I'm not really sure that it's worth it. How do you get out with your little ones to meet ppl? I'm sure I have a mental block now. I'm almost afraid to make friends because I'm unreliable and I often want a shoulder to cry on. That's not fair on someone that you have just met. I feel like Id just be a burden to them.

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Hi all
just wondering is home start the same thing as Sure Start? this company only run in certain areas, and its for under 5s. they run alot of different groups for the kids they also provide a bus service that costs £1 that takes you anywhere in area and if its for hospital appointment its free i think its called Plus bus.
they also have days out to parks ect in summer holis.
i went to a few of the baby and parent groups they were very good, but havent been for ages as i work in a playgroup so i dont get the chance.
My daughter is potty training at mo, sometimes its easier to change a nappy then clean wee off the floor and i nearly feel over on the wooden floor other day, i had cleaned the floor but it was still wet and i skidded. :oops:
its good to hear others stories
if we all lived in the same street it would be great, i would invite you all over for a cup of tea and some pain killers
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tkachev

Hi

I have a 5 year old daughter.When she was born I was so ill She had to sleep in my bed with me and now 5 years later she is still there!I bought her a brand new cot but it was too painful to get from lying down to walk to her cot,she would have starved by the time i got to her.It was easier to have her next to me.

I am better now but she is just used to my bed and wont budge even though she has a new bed and her own room.

I really dont know how I managed but somehow have muddled through.My OH had to give up work to help( our two sons are on autistic spectrum) so he has to do all the club and school runs.We never go to the school fairs etc and I feel the kids miss out.

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Hi tk
my son slept in my bed until he was 7 and there was nothing wrong with me or him, at that time.
my daughter starts the night in her cot but ends up in my bed at some point in the night :roll:
its ashame you dont go to the school fetes, is it to differcuit for you to get out?
other then your OH do you get any help?
best wishes
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woodbon

Hello, I feel quite humble reading your posts and hearing how you cope. I did want children, but at 54, I feel the urge to be Granny is stronger! All the cuddles and love you get must help, but not the sleepless nights and noisy, busy children running round when all you want to do is rest quietly. I'm sure they will grow up to be proud of how their Mums and Dads coped when they were little.

You will all have lots of happy memories as you get older, I expect you will mostly remember the good times! So I'll send you all my love and wishes for happy times with your kids. Love Sue

suncatcher

suzster wrote:

we have no health visitor, she left last year and the one that covers us is impossible to get hold of, we never had a 2 yr check, in fact i haven't seen a health visitor since sarah was 2 , last feb.
i took sarah to a thing called gym minis yesterday, it's obstacle type course for 2 + yr olds. sarah loved it but i had to explain that i could not help sarah do alot of the climbing due to arthur, the staff were very good but it wasn't just sarah who was shattered afterwards! it's every thursday and costs £4.80 per session, not cheap, but i'll try to keep taking her as she loved it and slept for 3 hours after!!!
sarah is due to start pre school in september but i am worried about getting her there. she will have 2 morning sessions a week 8.45am until 11.45am, much as i know it will do her good to mix with other children i really am uncertain as to how to get her there. it's a 20 min walk, on a good day then i have to walk back home and back later, i don't drive either so i'm kind of hoping maybe i can get help from other mums? but we'll see!
btw, i really appreciate talkjing to you and getting some advice, thank you!
sue

The obsticle thing sounds good but it is tiring going and i find am too tired to be sociable in afternoons at wacky they must think im really miserable but dont know anyone there so dont matter it just gets me out and son.
It did bother me going to nursery i live 25minuits walk away from sons nursery and was to tired in morning getting going is hard and toddlers dont always what to get up. I try to get up earlyer to get breakfast ect in mornings and will do this when he goes to school. and i try to pack bag ready with spare cloths. and try to do sandwiches ready for lunch in morning as i am not bothered about cooking some times when i come home with him. A friend who has ra told me she invited her childrens friend to wacky rather than back home in her house as it is less trouble and the parents thought this was good and did not mind not going back. i will try this as i worry about state of house somethimes and it is easier.

joanne