Buggies and the harness.

[StrangelyBzar]

Hi all,
As a long term R.A. case with both mobility and dexterity problems, I have found buggies and their harnesses extremely frustrating.
We have a dd (5) and an 8 month old ds.
Things I could do 5 years ago, I can no longer do, including the dreaded buggy harness.
Who invented these things?
We have just spent £50 on a new buggy, and the harness is no easier than the old one. The shops could not help, and no-one seems to manufacture suitable clips that a baby cannot undo, but that I can!
Is there a niche in the market?
Does anyone have any suggestions regarding making the clips easier to undo?
Thanks.

HELLO THERE, THIS MAY SOUND REALLY ODD BUT I ALMOST CAN'T BELIEVE THERE IS SOMEONE ELSE OUT THERE WITH R.A AND A YOUNG FAMILY!
I HAD ALL THESE PROBLEMS, I HAVE A DD (3.5) AND A 13MTH OLD DS, THE WORST THING I FOUND WAS THE WEIGHT OF THE BUGGY ITSELF AND LIFTING IT IN AND OUT OF THE CAR!
SINCE MY SON 6 MTHS OLD I USE MCLAREN VOLO WHICH IS THE LIGHTEST AND THE STRAPS SEEM NOT TOO BAD, DO STRUGGLE SOMETIMES BUT I'M USED TO IT! I HAD TO GET BEAKERS WITH SCREW LIDS ETC SINCE I HAVEN'T GOT THE STRENGTH TO GET THE OTHER LIDS OFF!
THERE HAVE BEEN NUMEROUS PROBLEMS REALLY, BUT THE WORST IS NOT BEING ABLE TO GET ON THE FLOOR (KNEE JOINTS) WITH THEM, THEM EXPLAINING TO OTHER MUMS, I ALWAYS FEEL IF I DON'T SAY SOMETHING THEY PROBABLY THINK I'M BEING "SNOBBISH" NOT GETTING ON THE FLOOR!
ANYWAY BETTER GO FOR NOW, MAKE THE MOST OF MY SONS PM NAP WHILST DD AT PRE-SCHOOL, AND CLEAN THE BATHROOM!

Hello Happyface
I can fully understand everything you said.
With my dd I used Tommee Tippee mugs, for exactly the same reasons, and then went onto Anyway Up Cup with the screw lids. The problem I have there is I don't always do them up tightly enough and they leak.
Then my dh sometimes forgets(??!!??) and does the bottles up so tightly, I am unable to loosen them to transfer the milk into the cups! My poor ds doesn't know wetjer he's coming or going!
My ds has just started crawling this week, so I'm hoping I won't have to keep picking him up quite so much - he is at least 25lbs already! (And I'm only 9 st)
Anyway, I can hear ds calling - catch up soon.

I don't know if this would help

I use a thing that's for climbing as a keyring (it might be called a carabina(sp) it just clips on to things - i don't know but it might work for fastening buggy straps?

HELLO STRANGELYBZAR, I THOUGHT THINGS WOULD BE BETTER WHEN DS STARTED CRAWLING BUT HE BUM SHUFFLES AND INSTEAD OF WALKING LIKE MY DD WAS AT 12MTHS, HE'S STILL BUM SHUFFLING AT 13MTHS!
HE IS VERY HEAVY TOO, BUT MY JOINTS SEEM TO BE BETTER THIS TIME THAN THEY WERE AFTER MY DAUGHTER, BUT I'VE STARTED TAKING METHOTREXATE AS WELL AS MY STEROIDS.
HAVING SAID ALL THIS I'M HAVINGA BAD FLARE UP TONIGHT AND MY LEFT SHOULDER WON'T MOVE!!
HUBBY PRATICALLY BATHED AND PUT TO BED BOTH CHILDREN ALL ON HIS OWN, A FIRST SINCE WE HAD DS!
HE TOO FORGETS THAT I'M A WEAKLING AND UNABLE TO OPEN THINGS IF HE DOES THEM UP TOO TIGHT!
I COULD KEEP ON GOING BUT THEN THIS WOULD LOOK LIKE TOO MUCH TO READ!
SEE YOU LATER

Hello.
Thanks Katy for your suggestion, I shall investigate that further - you might have something there.
Happyface - I started methotrexate a couple of months ago,having stopped with the breast feeding, and quite sure we are not having anymore children - to be honest I have not noticed a difference. Well, actually, I feel slightly worse - like I have a constant dose of mild flu, but GP not worried, and blood tests OK, so I'll give it a bit longer.
My mum was started on the Anti TNF injections, and they were having a positive effect - not on them at the mo as she has just had surgery.
I also take salazopyrin and have been for many, many years.
My dh gets the children up in the morning, bathes and puts them to bed of an evening - so no complaints there .
My R.A is worse this time around, but since there is a 4 and a half year age gap between dd and ds, most of the week days, dd is at school, which does make things a little easier. My dd is fantastic though, and I think my ds thinks he has two mums!
Hope you ease up a bit.
TTFN.

It's a c shaped peice of metal which becomes a ring with a hinged bit......that doesn't make much sense does it? Sorry

Hi there Stragelybzar and Happyface,

I have got Lupus and Sjogrens, not too disimilar to RA, and yes, I find the pushchairs and harnesses a real pain too.

Also, because I am tall, I had to look around for a pushchair with extendable handles as if i stoop, i pay dearly for it the next day(s). I had to think carefully about the price too, and ended up with a McClaren XT Techno. It is not too heavy without the cosy attached, but the weather is getting colder now, so I will have to fix it back in soon. At least my older boy is a tall 11 and can lift it out for me when he is around.

Do either of you have blue badges? If you do, have you ever been moaned at by an OAP because you have young kids and 'you shouldn't be parking here' as if disability and parenthood are mutually exclusive? I also almost got knocked over by an old gent in Bury St Edmunds, who huffed and puffed passed me, knocking the pushcahir out of my hands as he was so close. I started waving my badge around but he just moaned even more, as if I was using my mothers!

I get real fed up with people who assume you cant have disabilities, especially 'invisible' ones like RA or SLE, if you are young.

..............I have had my rant now and feel soooo much better!

Oh and I also use screw up beakers, and mine also leak as I cannot do them tight enough. I have tried snap on, but if I can use them, they leak. If they dont leak, I cant get them open.

I also have to do nappy changes on the sofa or poofee as I can't manage the floor. I used to use the dining table until he nearly rolled off .

For daytime naps, I put him in a babyden, as I can't carry him up the stairs. This has worked out really well, as he can now sleep through anything. I have it set up near to the computer where I work from home.

Perhaps we could start a hints and tips thread for making life easier. What do you think?

hi everyone, just logged on and thought i'd write but ds has juat started making noises so i've got seconds now!!
firstly re methrotrexate my consultant said it can take up to 6mths to take effect and i think i'm better on it it took 4-6tmhs i started end jan, trying to reduce my steroids now, i've benn on them for 7 yrs with other stuff alongside every now and then to see what worked: gold inj, salazopyrin, hydrocloxichlorine.
my mum has had joint problems for years too but never diagnosed! now she has been referred to pain clinic and on some new tablets which she seems to think are maybe finally the answer!
right after all that i've got to go so questions i wanted to ask everyone will have to wait! oh and quickly whereabouts in the country do you all live? i'm in east surrey.
bye ds calling!

Well, hello all
How wonderful to share experiences and hints and tips - don't know why I didn't try it sooner.
Yes, I have a blue badge - now 3 years since my first badge, and at first I felt awkward because I thought others thought I was a fraud. Now I get quite belligerent about it, although I am not rude to people, I just think it is none of their business and they can think what they like.
As you say allboys, the disability isn't always obvious at a glance, and because you HAVE to lift your baby, pushchair etc, it is assumed there is nothing wrong and you're pulling a fast one!
Let them live a day in our shoes....
I cannot get down on the floor - if I do manage it, it is one enormous task getting up - I do nappies on our bed and then have to put ds in his cot while I wash my hands etc - he thinks he's been put to bed, poor boy - but it's not forever, is it? My ds is a fantastic help, and at 5 years old, is at an age where she is keen to do so - I have been saved going up and down stairs on many occasions by my little helper.
Do you find your children have a greater understanding of life in general, and are growing up as especially loving, caring children? (as a result of disabled parents.)
Happyface, I am in Dorset, although I grew up mainly in Watford. Love being by the sea. I will give methotrexate longer then, based on your experience - I'm in a hurry for it to work - got a lot of stuff happening at home, and I cannot afford to be rendered more out of action than I am!
Anyway, take care one and all and look forward to hearing from you.

Hi, I am from Kent originally, but am now in Suffolk, not too far from Cambridge.

I do agree with you in thinking our children will grow up more caring because of our limitations. I am not wheelcahir bound, but another parent at DS1's rugby club is, and like us, DS1 chats away quite happily to him. It amazes me that some of the other children, and more tellingly their parents too, will avoid eye contact or talking to him. 15 mth old DS3 tries to push him forward, but he is not strong enough yet.

That reminds me of a funny story. When DS1 was about 4, we went to the zoo. He spotted a lady in a motorised wheelchair, walked up to her and "I like your wheels, how fast does it go?" she chuckled and started talking to us all. After a while he said "can you get out so I can have a go?" Out of the mouth of babes huh? He couldn't understand why we fell about laughing. If only everyone grew up as oblivious to peoples differences as a 4YO....................

I am on a combination of Hydroxychloroquine and Etoricoxib for the Lupus, which works fairly well in keeping it reasonably steady. Unfortunately I may have to come off the ECB as it is a similar drug to Vioxx which has been withdrawn. I am a bit worried, as I cannot take most of the OTHER NSAIDS due to a platelet condition (most of them cause stomach bleeding). i have an appt on the 17th so I will find out then.

As for hints and tips, I have a 'helping hand', which is my best used bit of kit. It has saved my back no end of times in picking things up off the floor. I also have 'coilers' in my trainers, as I cannot bend to do up laces. I bought them from the USA, as they have more cool colours than here (I got 8 pairs to save on postage), and my 11YO uses them in his trainers too as they dont get tangled in his bike chain.

Hello

very interesting Allboys - I am just wondering what coilers are?
We are going to have to make a concerted effort to teach our dd how to tie laces, as I tend to go for velcro on her shoes, which means she has been able to do her own shoes for some time. Now that she is 5, I think we could have success with laces.

I don't like going away because of all the difficulties that arise in hotels etc, such as taps that I cannot operate, no comfortable seating - that sort of stuff. As it happens, I am very much a home bird anyway, and we would rather spend on our home rather than holidays. We live 3 minutes from the beach, so I don't feel the need to travel - our children are happy with the local beach.
Talking of Suffolk, I lived in Keddington, near Haverhill when I was 11 (a long time ago!) I think our nearest big town was Ipswich.
Right, I'm off now, so will catch up soon.
TTFN.

ALRIGHT EVERYONE, YES I TOO HAVE BLUE BADGE AND GET ALL THE SAME LOOKS ETC!
ANYWAY, NEED TO ASK A QUESTION IF EITHER OF YOU HAD ANY PROBLEMS FINDING A PRIMARY SCHOOL?
I'VE GOT TILL THE 20/10 TO GET MY PREFERENCE FORM IN AND ALTHOUGH I'VE BEEN THINKING ABOUT IT FOR YEARS AND DONE SOME RESEARCH IT NOW SEEMS HARDER THAN I THOUGHT!
DISABLED PARENTS, NO-ONE SEEMS TO HAVE THEM, NEED A PRIMARY SCHOOL WITH A CAR PARK, VERY FEW AND FAR BETWEEN.
THE ONE WE'VE FOUND THAT IS IN OUR AREA TAKES 30 CHILDREN PER YEAR AND HAS 22 SIBLINGS THIS YEAR! WE COULDN'T BELIEVE IT! ALSO WE ARE AT LEAST 3-4 MILES AWAY FROM IT! SO UNLESS WE CAN PROVE EXCEPTIONAL CIRCUMSTANCES WE FEEL WE WON'T GET A PLACE.
I HAVE A LETTER FROM MY CONSULTANT SAYING I NEED TO BE ABLE TO PARK ETC, I JUST WONDERED IF YOU HAD ANY EXPERIENCE AND KNEW HOW MUCH THEY TAKE YOUR CONDITION INTO CONSIDERATION ETC?
THANKS

Thanks to everyone discussing their blue badges and looks they get. I have CIDP and my muscles in arm and leg are wasting plus I get very tired very quick so have been issued a blue badge. Because I look healthy, have a 6 year old son and occasionally my 2 year old neice in tow, I have felt embarrassed using it and worried what people think ( as you can be sure to get the odd stare when you park). I will now hold my head high and enjoy parking with ease. Thanks all

Hi all,
Great that we have all helped in some way.
Happyface, fortunately, the primary school my dd attends does have a car park, but I feel I had to battle for our "needs" to be highlighted.
We now have two marked disabled bays, which are in constant use - it proves to me the need is there.
Quite often, grandparents pick up children from school (one's to which they are related of course!) There are a lot of blue badges out there!
I personally feel it should be taken into account, otherwise, is it not a form of discrimination?
I think being a disabled parent to young children is an "exceptional circumstance", and other than disabled children, I am struggling to think what other exceptional circumstances there are.
When we applied for my dd's school (outside our catchment area), I wrote a letter with the form explaining my circumstances, and added that there were several/many children attending whose parents were friends of mine and had already offered to take/collect my dd to/from school on those days I couldn't.
Go for it - it might be easier than you think.

Sorry StrangelyBzar, I have been offline for a while.

Coilers are curly elasticated laces that do not need to be tied, and therefore do not come undone (no tripping/catching up etc). They convert shoes and trainers to slip-ons

Website:

NoTieLaces
Coilers

Both these sites will post to UK which, believe it or not, is cheaper than getting them from disabledaceessories.co.uk or medisave (nearly £6 per pair +p&p and poor colour choice)

I had a quick look on ebay as well, and they have some in the UK by the name or "springers" or "springs" by Doc Martens, with various prices from £1.50 a pair, but again the colours are limited.

I have raspberry/silver/white striped in my blue trainers, and DS1 has fluorescent yellow in his black trainers, and black in his school shoes. (Ok, there is no accounting for taste!!)

Hope this is of some help to you.

can't believe I may have found people to talk to as have just had RA confirmed after 2 years real ill health. have new dd, 3months and dd22months, dd nearly 7 and ds 9. gp just got me a blue badge after me spending ages in total denial and trying to pretend could manage. I'm on plaquenil and arthrotec but gp wants steroids for me - are they a good thing?
all baby items nightmare but i use a volo and a changing table - can't get on floor at all.

Hi Allgrownup. Sorry to hear of your recent diagnosis - at least now you can move forward. I always think waiting and not knowing is the worst.
I never had steroids - I decided not to take them as my mum, who is v. bad with RA, took them and did not help her. That's not to say they would not benefit you.
My mum now suffers with an ulcer on top of everything else, and it seems that certain things she tried had similar effects on me, so I avoided steroids! We are all different, and with RA, what works for one doesn't necessarily work for another.
That's not much help is it?
I have since been told that today's method is to try and hit the RA hard once a diagnosis has been made, so perhaps that's what your GP is doing for you. I expect you would be closely monitored too.
Good luck!

My ds (10 months old) has discovered standing up and cruising within these last two weeks, so it has been hectic. My poor back is suffering, as he is a stocky boy. He is already 2' 7"! Lots of things are within his reach! We've experienced many banged heads as he's toppled backwards, but he seems to be baring up better than me!
I am looking forward to the day he starts walking!

Hi Strangely bazare - thanks for your message - you're rigt about the relief of diagnosis, I've been worried sick is actually MS as have some of those esymptoms also......was very frightened and unable to talk to dh as adore him and don't want to lumber him with a sickly wife.
Have just got some blood tests back and still pretty high inflammtion (so not totally lazy but actually unwell then!)........am trying steroids for a few weeks to try to wallop it.

re growing babies and illness - my nearly 2 yr old seem to realise I can't do everything and is responding brilliantly to 'training' - helps me help her dress, get in pram, cot and up on table etc. Is an absolute monster for dasd when changed and really good for me (don't tell him this or he'll stop doing it!).
If all else fails I bribe with favourite stories or even sweeties.........does this qualify me for bad mother thread (hilarious by the way).