Does anyone have any helpful hints on how to fasten a babies nappy when you have crippling ra in your fingers? X

[Kat89]

I am a single mother of 2 small boys and have been recently diagnosed with RA. It affects all my joints but is most severe in my hands and life has become extremely difficult. I can barely get myself dressed never mind my boys any help or ideas would be greatly appreciated kat x

[Hidden]

Poor you, that sounds like a really difficult problem. My first thought is to use stick-on disposable nappies, but actually you need some help and support from maybe your health visitor, or your GP.

You can also get "training pants". Sorry I wish I had a better answer. I hope someone turns up soon with a better idea!

[hamble99b]

disposables or traditional? I'll have a think.

one useful idea for clean up is too use nappy liners in either.

[Kat89]

Thanks n they are the Disposable ones but the problem I'm having with them most is un sticking them from themselves to fasten them as my grip is not very good and getting hold of the tiny little bit is difficult thanks again kat x

[earthwitch]

Ask an occupational therapist - they are the ones who help you figure out how to do practical stuff like that, or provide you with aids to do it. They can come up with some really great suggestions. Rather than waiting for a referral to go through, I'd just phone your hospital OT department and say "I have RA and a baby in nappies, and I can't fasten them - can an OT phone me back with some suggestions for what I can do?" and see what happens.

[Kat89 in reply to earthwitch]

Thanks very much I didn't realise I could do that I'll definitely be doing that first thing on Monday. X

[Terrpist in reply to earthwitch]

I am an occupational therapist assistant for fifteen years I would add Velcro circles if someone could stitch them for you

[lbtabby]

Kat, I have a 2 year old and I know what you mean !!

What I do is on a good day I will undo a batch of nappies , or if someone comes to visit ask them to do that for you, it works for me, Karin x

[Kat89 in reply to lbtabby]

Thanx Karin I wouldn't have thought about asking someone else to open a batch but il ask my mam when she visits tomorrow. This is all so new and scary for me that just getting clothes on my boys atm is a blessing lol x

[Kat89 in reply to lbtabby]

Allanh just made a great suggestion about getting a cello tape dispenser and using cellotape to fasten nappies, I'll definately be trying that, thought I'd share it with you x

[lbtabby in reply to Kat89]

Thanks kat x

[ellybw]

I have the same problem. I just can't grip the tabs and pull them off. I've tried pulls ups on my 3 yo but I find to grip them and pull them up is just as painful. I can't wait until mine is in pants (though helping them into them also hurts) but they'll be able to go it themselves soon (hopefully).

[Kat89 in reply to ellybw]

Allanh just made a great suggestion about getting a cellotape dispenser and using cellotape to fasten nappies, I'll definately be trying it and thought I'd share it with you x

[Kat89]

That's exactly my problem I've been using my teeth to open the clean ones but its not quite as easy when they are dirty lol my eldest son dresses himself completely at 4 which helps me as I can concentrate all my energy on the little man I have the same problem with press studs on sleep suits do you Ellybw? X

[Hidden]

This post has made me realise how much easier my life is now to when I was first diagnosed 15 years ago as a single mum to 2 children. They were a little older than yours so I really admire you for the way you manage a couple of toddlers with your hands being so sore.

One of the things that I regret, in retrospect, is the amount of time I struggled on my own thinking that this was just the way things are. I now know, through sites like this, that there is help out there but that often you have to seek it out and ask for it and for that you first have to know that it exists.

Earthwitch's advice is spot on. There is a whole team out there who can be called upon to help. OT's, physios, social workers support groups etc. etc. They will advise you on equipment, get hand splints made, make sure you are getting the correct financial help. Don't wait for them to come to you. Initiate it yourself and get the help that you need from the offset.

It makes me furious to think that there are still young parents (single or otherwise) out there who are not automatically referred to these services as a matter of normal practise. Oooooooo I'm on my soap box now!!!!!

Good luck

Judy

[Kat89 in reply to Hidden]

Thank you very much Judy I will definately be contacting my doctor or someone else who can help first thing on Monday morning and I wouldn't have even known about this site if it was for my aunty doing all the research for me. Thank you again for your support kat x

[Terrpist in reply to Kat89]

Single Mom is hard enough without RA, I was a single mom befor I was diagnosed,it was so hard. I remarried and it worked out great hope you are as lucky. Thing about you

[allanah]

Get a cello tape dispenser and use small strips of tape instead of the nappy ones. Sometimes it's easier ? And defo see your OT . Also have u tried you know winter gloves some of them have bob boy grippy bits on the palms, I use them and they work.

[allanah]

Bobbly gloves that should be!

[Kat89 in reply to allanah]

Thank you Allanh that is definately something I will try when my hands are at their worst kat x

[Hidden]

My heart goes out to you, goodness only knows how you cope with all the other things, besides nappies, bathing your boys, picking them up etc etc !! You need urgent help and I pray you can get it!! I feel embarrassed I moan on about my problems,when there are young mums out there like you with his wretched disease and little children to bring up. As other members have already said please ask for urgent help and advice from your GP, Health visitor, OT etc. I am thinking about you and hoping you get the help you need, Lynda x

[Kat89 in reply to Hidden]

Thank you for your kind words Lynda they are greatly appreciated I use my arms hooked under their arm pits to pick them up as its easier on my hands and as for pretty much everything else I have an amazing mam who comes most mornings before work and after to help me dress my boys and bathe them and put them to bed. If it wasn't for her I would be lost. I'm having a good day today and not in much pain I hope you are too. Thanx again kat x

[Hidden in reply to Kat89]

God bless your mum!! I can't stop thinking about you, please let us know what happens and if you get any help. I have very painful hands/wrists and find thermoskin gloves help me, they are very close fitting and fingerless so you can do jobs without taking them off all the time, they give some support and the warmth helps me, they are £18, I got mine from Lloyd's chemist but I have seen them on ebay, they might just help you a little bit. Please take care, Lynda x

[jazie]

Hi Kat

I'm afraid I havnt got any new answers, but the sellotape sounds a good idea.

My children are now teenagers but were 2 years old and 3 months old when I was diagnosed.

It has got so much easier as the children got older.

Like you I remember picking them up with my arms under theres. It used to be particularly hard getting them in the bath and in their car seats.

Take care

[fastball]

I did training to look after children and babies, when i was younger and where i trained wanted me to work with Home Start as they do go in and help mothers with young babies if they are having difficulties. They go in and help with twins and multiply births. You would have to ask your health visitor about this. I am going back to when Home Start started they now have day care and nurserys, so its worth asking. Hope you find help it would make things a lot easier for you. XXX

Chris

[sandraw21]

Went through all this years ago with my two. I did use disposables, but there times when I used terry nappies. My daughter had chicken pox, and disposables were no good then. I had large nappy pins, don't know if they still do them. But with that I could go slowly through the layers with my finger inside to prevent baby being pricked ! Also had tape at the changing table.

They do get used to how you do things, and just because it is different doesn't mean its wrong.

When she was a toddler we developed a way of picking her up while sitting which she never did with anyone else.

She stood in front of me facing away. I put my arms under hers and joined my hands together on her chest. I could then pull her up onto my lap safely. Whenever she wanted to be picked up she would stand like that.

You don't have to do things the way everyone else does, do what is right for you.xx

[justlizz]

I have a pair of tweezers that look like sissors(spelling)that come in very handy for undoing tabs they also help with the bottles that have a seal on them

lizz

[Kat89]

Thank you all for your suggestions they are all really helpful and I will try all of them thanx again kat xx

[Pands]

Hi Kat, I have had RA for 15 years - so before and after my twins were born (they are 8 now). My RA came back with a massive flare about 8 weeks after the birth. Like you I used to lift them using my arms not my hands as it was so painful. I had to call my mum early one morning to come over and stay as it was so bad (she lives 90 miles away!).

From what I remember I was given a steroid injection to try and dampen down the inflammation and pain while the drs adjusted meds up asap. I can't remember what I did about the nappies etc - I do remember having massive problems getting sleepsuits on them and fastening any of the poppers! It also sounds like your medication needs reviewing - what does your rheumatologist say? Best wishes.

[Kat89 in reply to Pands]

Hi Pands I'm at the moment trying different medication to try and find what works best for me and I'm on quite a high dose of anti inflammatories and painkillers but these just seem to take the edge off and not really ease the pain. I'm seeing my consultant again on Tuesday morning so I'm hoping for more answers then. I hope your feeling well and having a 'good' day. Thanx again kat x

[wiliby]

Hi, some great advice so far, like you my RA kicked in when my daughter was 6 weeks old. When she was around 12 weeks my GP suggested I needed some support as like you I couldn't cope with nappies, getting dressed ect, the health visitor came and arranged for someone to come in every morning to help. This lady would help me get dressed, make me a cuppa, toast and saw to my daughter until my tablets took effect. I think she was through a charity for vulnerable adults, although I wasn't,t under this category they were able to support me when I needed it.

It was really hard accepting this help but it took away so much worry with mornings being so much worse.

Can I just add as you say you are newly diagnosed, what you are going through now is the hardest, it will get better now you are hopefully starting treatment? I never dreamt for one minute that my then diagnosed 'severe aggressive' RA would be under control. By the time my daughter was 1year old I was in remission (medically induced) and have been ever since. She is 3 years old now. I am working and run around after her the rest of the time! If anything I am more active now than I ever was. But the difference is now I appreciate every day that I can run, crawl around and be the mother I never thought possible.

I feel so sad for you right now but please feel free to private message if you need a shoulder xx

[wiliby in reply to wiliby]

And, just remembered, the physiotherapist also helped me with tips on handling baby!

[Kittykatxxxxx]

Hey Kat I don't have any advice but I hope you have found this advice is helpful.Also hope you can get good control on the r/a and soon. By the way I am also Kat ans was born in 89 XX

[Kat89 in reply to Kittykatxxxxx]

Kat as in Kathryn?? N where r u from?? N yea all of the advice has been useful. I can't believe how many people have taken the time to answer my question it's really heartwarming xx

[Kittykatxxxxx]

Yup kat as in Kathryn and I am from surrey ( Woking) How about yourself xx

[Kat89 in reply to Kittykatxxxxx]

Kathryn from newcastle how's ur day? U havin a 'good' day or a bad day? X

[Victoria-NRAS Partner Moderator NRAS]

Hi Kat

Glad to see you've had such a large response on here. Thought I'd just add a quick link to an article on our website called 'Tips for mums' which was developed by a healthcare professional along with her patients who were mothers with RA, in case there's anything useful in here:

nras.org.uk/healthcare_prof...

Kind regards

Victoria

(NRAS Helpline)

[Kat89 in reply to Victoria-NRAS]

Thanx

[Chrissycl]

Not a hint just a suggestion, look on netmums there may be other mums that can help and or in the same situation.

[Kat89]

Thanx Chrissycl I'll have a look x

[lbtabby]

Hi kat, how are you doing , poppers etc are a nightmare I agree, I don't use sleep suits as pjs are easier, for me I have to be as organised as possible I never change nappies on the floor as I can't kneel or sit on the floor ! So I have 2 places in the house one upstairs and I down where I have everything to hand at a comfortable height , safe for toddler ( of course)

In the mornings I make sure I am up before she is so I can get myself moving and ready for the day, getting her in and out of the car seat is awkward and lifting her into a supermarket trolley can be a proper pain as I can't lift her high enough to get her legs in the seat, lol, Sainsbury's trolleys are the worst as they are higher than other supermarkets, and I'm only 5 ft 2 , nightmare , x

[allanah]

Just wondering if any of the tips worked? I know Ruth at NRAS is compiling a leaflet of tips , u might be able to tell us and her if anything helped for you ?

[Kat89]

Thank you all very much! Some of you tips have really helped me to realise I'm not alone and don't have to cope on my own. Unfortunately nothing has really helped with undoing shortys nappies but I've had my first MTX injection and on hydroxychloroquine sulphate which seems to be helping if you ignore all the crappy side effects. The one thing that has really helped is to set my alarm 2 hrs before I'm due to get up and to keep my tablets and a biscuit with a drink beside my bed to take my tablets then go back to sleep and give them a chance to get into my system. So when I get up I can actually move. Hope your all having more 'good' days than bad x