I'm new here and although I am 6 years along in.my RA journey, I'm only really beginning to deal with the fact I have this condition. My main issue is fatigue and also the MH issues that come alongside it. I have two young children and am.a single mother and I just don't know how I'm supposed to cope on my own. I have some great friends but people without this condition can't really understand the daily grind of it. I would love to connect with some other mothers, ones in the same position as Mr and perhaps ones who have already tried the path and may have some tips for how to survive it. I find the 'mother guilt' crippling a lot of the time and I am sad and angry about how much me and my kids miss out on because of RA.
Any other women out there who are in a similar situation??
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Heraripley
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Hiya Heraripley, welcome. It can't be easy, not quite sure how you cope. I’m sorry I'm unable to help but we do have members who are mothers with young children. Some are single, in fact we have a man who has a young daughter too although I’ve not seen him here for a little while he is normally a regular contributor. As you'll know from experience they'll be busy so may not see this until the evening but I’m sure they'll be along & once they catch up will reply to you. I hope so but I just didn’t want you to think nobody had read your first post.
Thank you, it's nice to meet you and it feels good to connect to this community. I'm six years in to my RA journey but only really just getting a handle on it and realising that I don't have to be isolated as there are lots of us out there, even if we're all stuck in the house!
Hello and welcome Heraripley. I’m glad you found us.
I haven’t got young children any more but I just wanted to say hi until someone else comes along that has more recent experience. I had been diagnosed five years before my daughter was born. I too felt guilty I couldn’t do all the things that she wanted to do but we did do things. Sometimes we had to do them a bit differently. Sometimes she did things whilst I watched. She grew up a very confident, independent girl. She went to school as one of the youngest in her year but she could read and write, tie her laces up, get herself competently dressed etc. None of her peers could do this. She didn’t miss out, but she did do lots of things her friends mums didn’t have time to sit down and do with them. She’s become a great artist and bakes wonderful cakes too😊 these are things we used to do together because we could sit down and do them.
Please don’t feel guilty as I’m sure that you do plenty of things with and for your children. They will still have a great childhood.
I apologise, I didn’t mean to ramble on so much but I just wanted you to not feel as guilty. Hopefully some of the other young mums will be along soon to support you. Do keep talking to us on here though because even though we’re not in your situation we can be a support to you x 🤗
Thanks Kitty that's wonderful to hear about your daughter. My eldest is like that too and on my good days I can see that the independence is a positive experience for them. I'm learning to structure our time around what I can do, and finding little tricks that help us along - I recently invested in a teasmaid and it's a godsend in the mornings as I can't get out of bed without a brew! I guess it's just not how I imagined motherhood to be but I also know that mothers without chronic illness would probably say the same.
It was especially as I don’t drive and I was desperate to keep my job. The love of my children and my job kept me going. The RA lady on their phone like kept me going too. She said,’You may never be this bad again ( I wasn’t) and to walk through the pain.’ It was a 10 minute conversation but it gave me strength and still does .
I too am a single mother of four girls, albeit only two now at home. It can be hard. My youngest was only five when I initially struggled with the condition.
Can I ask, what ages are your children.
For me, the thing that helped most was having good routines for the girls, being really diligent about pacing myself - which effectively meant saving any energy for them and also signing them up for clubs etc- this ensures they were seeing kids their own age and having fun. As they got a bit older, it was easier to explain what was going on for me and I’d schedule two days a week wherein we’d have a game/ dvd night and the other, we would go out.
I also had no qualms about dragging their aunts and uncles into helping when things proved too taxing.
The mother guilt, I get. But remember, you’re a person first and like the rest of us, don’t have untapped resources. Be kind to yourself. You’re doing the best that you can in a very difficult situation and try to remember, your children are safe and loved and that is far more important.
If things become too challenging, there are agencies you would be able to contact for further support.
Don’t know if any of that helps but know that your not alone, people are always here to listen and offer the benefit of their experience.
My girls are 6 and 3. It's the mornings and lack of sleep that really do es me in. Plus I moved house 6 weeks ago and so haven't got the extra help in place that I had before from a woman who came to clean. I also got an au pair for a while but it didn't work out. I k ow I need to be kinder to myself, but I always feel like I'm failing, particularly when the house is a tip and we haven't got out and about for days. It doesn't help that I don't drive so getting to places is tough, although I have set myself the aim of getting them to one dance class a week and then build from there. I have contacted adult services etc before but they don't offer anything to someone in my position. But I know I do my best and that's all we can do in the end!
Absolutely. It sounds like you do everything you can. You didn’t ask for this condition, so don’t punish yourself for having it. You’ve also had a lot to contend with, the stress of moving house is significant.
I’m a social worker and it’s no surprise to me that adult services were no help. Have you thought of contacting children’s services for some support?
I did that too and as all my family are in social work I know that my kids just aren't a priority as they aren't at risk are happy and healthy and fed. At the end of the day the baseline is so low for these services that disabled mums don't figure into it. I think for me I want to thrive rather than just survive...I don't know it is definitely an eye opener becoming disable about how society is for poorly people. I also think the house move has been more exhausting than I thought it would and it's going to take time for me to build up my support systems again. I had a great cleaner before and not been able to find another one who gets it (she had a close friend with RA so she really understood).
I totally hear what you’re saying. What I would say is as a children and families social worker, we don’t just offer support to children who are at risk. Services are also about families in need of support. If a situation didn’t meet the threshold for our services, we would certainly signpost other services that might be of help.
However, it does sound as if you’re more just needing the time to sort things out ( cleaner etc) after a big move. Have you looked in the local shops/ papers for reliable cleaners? It’s such a drain on the energies we need for the day to day things, isn’t it?
I really hope that things settle down for you. If nothing else, keep talking here- it might help you feel less alone in it all x
I have young kids also, mine are aged 8, 7 and 6. It is very challenging but it must be especially hard on your own. First of all don't beat yourself up I'm sure your doing a terrific job! Having this condition is exhausting, I know I'm tired all the time and once I get the kids off to school I must admit I do try and rest a lot. I just do a little housework everyday and then sleep before they come home if I'm not working.
I do feel guilty also a lot of the times. Before I got sick I always done so much with the kids but it's different now. I do stuff with them that I don't actively have to get involved in. The likes of indoor play centres, parks etc, they can play on while I have a seat. I sign them up to after school activities also, they go to art and tennis. We go swimming and if I don't feel up to it I sit at the edge of the pool while they splash around having fun. But there is days that are bad, we just have a movie day at home which my eldest says he just loves (I think it's the sweets he loves).
It is a hard frustrating condition to live with but you are trying your best. Once you get settled in your new home I hope things improve for you.
I know the feeling, I hate when the kids ask to do something and I just have to say no. Mine are slightly older than yours so they do understand sometimes I'm not good and sometimes plans need to change. All we can do is take one day at a time and hope for the best. I do hope you have some family around you that can offer support and help out.
Hey Heraripley, I'm a mum of an 11 yo son with autism and an 8 year old daughter. I was diagnosed when my daughter was 1, when I started getting symptoms suddenly after stopping breast feeding her. At my worst I couldn't even change her nappy or lift her, but thankfully my consultant figured out a good med regime for me quite quickly. Also I was fortunate to be a stay at home mum, so could rest when needed. Fast forward 7 years and I have a term time, part time job, although off sick atm with muscle pains and fatigue. I'd be lying if I said it wasn't a struggle, I thank the powers that be that I wasn't symptomatic when my son was born as he was a much more challenging toddler with his Autism. Now he manages so well and is off to secondary school in September 😢😵. I am married although hubby often works away, so not overly supportive on the whole parenting malarkey. The kids are old enough now to understand when I'm poorly and need to rest. I'm sure you are doing an amazing job. Kids are very resilient, and as long as they know they're loved they are happy.
Hey! I'm fairly new here only diagnosed in August 2019. I'm 28 and have 2 daughters, one is 10 (😳) and my youngest is 4. I'm very fortunate to have my husband but I was a single mum for 5 years with my eldest. I can't begin to imagine how hard it must be to be single and dealing with RA with children. I find the small things pretty difficult and I deal with some guilt because of that. My eldest has taught herself to do her hair for school and this upsets me but it's. One of the things I find difficult especially first thing in the morning. Fatigue is a killer for me too and was always treated with anti depressants until now. I tend to fall asleep on the sofa with them watching TV more than I like to admit, but sometimes I can't even keep my eyes open if I want to. Weekends are better for this because my husband has finally come to terms with the fact that I'm not just being lazy 🙄🙄🙄. I know your friends and family may not understand but if they offer help take it because having time to recuperate is so important and your kids probably enjoy socialising 😊 try look at things from a different angle when it comes to missing out, because it just makes the things you can do way more special. I hope you can connect with another single parent that has RA so you can support each other but until then you have us to off load to
Omg it must be so difficult for all you young mums with small kids.I have 3 but thank god they were older plus you are a single parent so nobody to take over.You can only do your best.Sorry i have been of no help to you but look after yourself and doing a difficult job xx
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