Mummy woes -RA guilt

I been feeling a little down and guilty of late. I have a young daughter she's 7 and she's coming to the age where she is very aware that mummy is in pain all the time and not able to do all the things that maybe other mums are able to do.

She was upset last night she said she was fed up of me being sad about being in pain and maybe I should pretend not to be in pain.

I told her it wasn't fair for anyone to have to pretend and she should have a little think about it. She's woke up this morning upset that she said that to me last night and has apologised. I feel awful because she obviously feeling all the emotions about it. Can't be nice seeing your mum in pain when you just want to run around the park with her.

I've had the dmards stopped and I waiting to start a biologic so I'm flaring, and because it's summer holidays she's seeing me struggle more. I feel so guilty. I do my absolute best, I struggle to walk alot so I arrange play dates and cinema and anything I can do that's sitting down, but I can't help it I do say that I'm in pain when it's gets too bad and probably look really sad. It's so difficult dealing with all this 🙁

13 Replies

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  • Hi!

    I completely understand how hard it can be.

    I have 2 boys 2&6, my 6 year old gets very frustrated with me because I can't do much with him. He gets really mad and says things like mummys stupid legs or once when I couldn't take him out he said I'm going to chop your leg off...

    I'm flaring too at the moment and it's harder because you want to rest but you also have to entertain 24/7.

    Please don't be too hard on yourself! You are doing everything you can to make sure your daughter has a lovely summer.

    I think as parents we take on alot of guilt, it's hard enough as it is and on top of that we are also dealing with a long term condition.

    You are doing your best, always remember that.

    Take care, always here to listen. X

  • Its horrible but don't feel guilty devise other games that you don't have to run around. Used to 'play ball' on the trampoline (once I got up there) sat on my bum and rolling or throwing them around - varying size of balls. Reading anywhere different - they will realise it is the time spent with you not what you can or cant do. Used to do a fair bit of crafts - internet or library books for ideas. Card games, dominos, memory (tray of items and take one away) etc. Just enjoy being with them they will soon grow and will not want you. Hoping the biologics will work for you like they have for me and changed my life (took trying a few to get there though). Farm

  • I reckon everyone with this foul disease and who also have children are heroes. I don't know how you manage and I would give you all medals if I could. Parenthood is hard going sometimes even when you're healthy and there are times when all children are going to be unhappy with you and what you can or can't do. You love them and they love you. Everything else is a bonus. Huge hugs

    Jan

  • That is so tough, the guilt just kills you doesn't it. I've got 2 kids, although they're a bit older, 9 and 11. It was hard for them to see me in so much pain (and in tears quite alot of the time!) last year when I was at my worst. I'm now on a biologic and in a much better place than I was. Hopefully it'll be the same for you.

    Just an idea of something you can do with her that'll take minimal effort on your part. I bought some Betty Crocker cake mixes the other day - chocolate cupcakes and milk chocolate cookies - for my daughter to make. They're so simple your daughter could almost make them on her own (with a wee bit of help from you). Get her to lay out a cafe and make menus/take orders/make drinks etc, that'll keep her busy and happy for a few hours!! Take care.

  • oh yes forgot about café and also teddy tea parties.

  • I am in tears here with your post- also a mum and so relate to this. Giant hugs and round of applause as yes it is very hard. What is great is that you are able to talk with her. For me that is the key with my kids. I tell mine I am sad because it hurts and because I wish I could do as much with them as I used to. Also that I am angry, just as they are and it is ok - we are angry with the illness not with me. It's scary for kids to feel angry with their mum so I think it helps to normalise it as part of a normal reaction, to be angry at the RA for spoiling things. Then we are kind of united against it. There are two books mine have found helpful with some of the emotions - What to do when you worry too much, (for anxiety- all the worrying) and What to do when your temper flares - for anger. There are others in the same series. Mine are slightly older than yours but the books work for any age and can be read with you.

    It also helps mine if they feel they can help out when things are bad, like opening things for me or carrying plates etc. Then they feel less useless in the face of a situation they can't control and don't understand.

    For me, my kids were very worried before we had a diagnosis as they just saw me getting worse and unable to dress etc, so as soon as we had a name I told them what it was and explained what it does ( in kids terms) and that there are medicines to help but they take a while so we have to be patient. It helped all of us to have a 'label'. (They were worrying that I was going to die.) We have our own name for it and call it that when the kids talk about it. I let them ask me anything any time about it and that helps as some of their worries can be dispelled quickly ( like will you have to have new metal legs and will they cut your old ones off?!) and once the worries are out of the children 's heads we know what to address.

    I think it is lonely to have a parent who isn't being like all the other parents in what they can do. My hospital is having a get together for parents with arthritis later this year where families meet and there are children's activities. Mine seem very keen to meet others in their situation which underlines that they want to feel less like the only ones dealing with it.

    Have you been able to explain to your daughter what RA is and what you are doing about it? At 7 it must seem very confusing 🙁

    Thinking of you and sending encouragement. Hang in there and remember what matters is that you are there for her, not whether you can jump hurdles 🌺🌸

  • Oh Jenna I so identify with how you are feeling... I feel guilty all the time- I've been dreading this summer holidays- I am so ill on the meds and even though I see some improvements I am so exhausted everything feels like a struggle- I am on my own with my kids 8 and 5 and I am so grumpy and no fun. Yesterday my 5 yr old said it wasn't fair that she has an ill mummy and her brother didn't- diagnosed Dec '16. She is right - she has a crap deal!!! My OT says I try to do too much but what is the option? I hope the flare calms down and the new biologic works for you quickly hon. It's awful that the summer holiday has to feel like an endurance test- it should be fun!!! Take care xx

    Ness

  • By the way I also feel guilty for being moody, limited etc and my children say similar things - my eldest said what your daughter said almost in the same words. You are not alone!!

  • We had a chat a few weeks about about what was wrong with mummy, and I asked what she thought was wrong and she said mummy has cancer. So she obviously had jumped to conclusions in her head and I guess cancer is the only 'illness' that she had ever heard of. I explained her to how what I had was different and that eventually I should find a medication that will make me feel a little better we just need to be patient, but now every time I go to the hospital or docs she asks me am I fixed now. When shes a bit older I think it will be easier for her to understand. I've asked my husband to have a little chat with her and I'll definitely do the baking with her. It so much easier when you have the routine of school because I can rest whilst she there and by the time she gets home from school I can prepare for it. During the summer she's up at 6 and doesn't sleep till 8. I'm so reliant on her playing on her tablet or computer which i hate. Ugh... :( thank you so much for your replies it makes me feel no so alone in this, and really hopefulfor the biologics xxxx Jenna x

  • Your post had me in tears, it brought back all these memories from last year when I was really ill that I had forgotten about. My kids had also got it into their heads that I had cancer and that I was going to die. That was in the early days when they didn't know what was wrong with me. Getting a diagnosis has really helped to explain it to the kids. They're so understanding, bless their wee hearts, and so protective of me. The guilt you feel is the worst though. Take care.

  • Have u tried having a systemic steroid jab just to bridge u over ? Works for me and I'm on my 3rd year of trying to sort drugs. Use it only when I need to. First couple of days on it I flare then it settles and swelling goes down for a couple of months...I've got a 12 year old and also feel bad sometimes that he's got a sick mum .On my 3 rd year of trying to find the right drug. Currently early days with benepali and feeling hopeful!

  • I have three boys and understand. I have had pain for 20 years and finally got RA diagnosis but believe I had it most of this time. I have been leaning on board games and reading books with them (although sometimes books hurt to hold)

  • On the baking thing, Wrights cake mixes are also super easy and the chocolate fudge tastes really good!

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