So I am improving. Moving better, left knee hands and feet still not great.... But I can walk and get around more. Weak and feeble but not the excruciating pain. Pain is there in areas but on a different level. Oh my I knew that I was beginning to flare but didn't expect this as a birthday present... My birthday was on Monday. Still family here and managed a bit of cake Monday afternoon. My poor little girl was so upset because it was my birthday and also it is scarey to see me like that. She sobbed because she has seen me relatively well for the last 3mths and doing so much. It is hard for her to understand why the meds don't make the RA go away for good. It is hard enough having RA to deal with myself let alone loved ones. My daughter is 12 years old and in the last 4years she has seen me ill from RA and allergic reactions. A serious allergic reaction where we had to call paramedics, another time in November when I woke up in a similar situation to this Sunday night. She was frightened and the thing is with all of it no matter how you reassure and explain things... Why Mummy's body doesn't always like the meds, why RA doesn't just get better, why even when the meds work it doesn't always go to plan. I know that for her she is scared. Scared that Mummy can't do things that Mummy will never be better, that Mummy will die. I know many people find that explaining RA isn't easy. In the early days when my symptoms were called low grade and it was hard to explain RA because it didn't effect me as it does now, I would get upset because my diagnosis and the gradual realisation of what RA is was met with people being bemused...while I was scared and felt this sense of frustration that people weren't understanding me..... Well you look so well, why are you doing that strange diet, go on have a cake, just take the meds I would. I have some great friends and family who are bright and caring but I realised that unless people are willing to hear what RA is, to learn about it, and why it is a serious illness that has the potential to stop your life as you know it in its tracks, then people just won't get what you are going through. Once things change and it becomes bloody obvious that you are ill, then people start to realise. As I say the friends and family I have around me are loving and more supportive than some people have. RA is a cruel horrible disease. It is tough to have it, it is tough for those that love you to deal with. I have seen the effect it has had on my, parents, my husband,.... 'We feel so helpless'..... My beautiful, loving, caring little girl sad and scared.
So to all people who have RA you are truely brave. You deal daily with what would floor most if they experienced it for just one day. Thank you to the people who 'get it' on this forum and the NRAS charity.
Most of all thank you to my little girl who I adore..... Your smile lights up my day.
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Mouseling
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I've got tears in my eyes i have felt like you but just remember in your darkest hour it does improve and just when you think it can't get any worse things do start settling and you can feel normal for a while we just have to take the bad first lots of hugs plenty painkillers
Keep on keeping on. You are doing so well. My children were older so didnt go through what you are. Just remember your daughter loves you beyond words regardless of your disease. Its hard. Your amazing doing what you do. Be kind to yourself. 💕
Thank you for saying about my daughter. They just cant work out whats wrong and she has decided till she gets worse she will leave it. Im think maybe thats not the best but its upto her as she is nearly 30.
So she was 28 living at home ( now not) and my son 31 when i was diagnosed and that was hard enough. I think about those with young children and really admire you all. ☺☺☺
It's so hard for our kids isn't it. My daughter is just 13 and had a lil breakdown at school this week as I've just got a wheelchair as I can barely walk at all. Plus my pain levels have been awful. Feel like I've been flaring since after Christmas. I just don't get a break. She's worried I'll end up in hospital and misses our old life. My 16 year old son was diagnosed with Autism last week and I think that scares her too as he's not faking how he acts etc that is him and she has to learn to accept it.
I've got rheumy next Mon and I'll be demanding answers and meds that work!!!!!!
That is ao tough.. I thought I would need a wheel chair on Monday to get to the Dr, but they came out to see me. Do you have the support of 'Young Carers' for your children? They have helped us with emotional support.... My daughter doesn't have to 'care' for me but caring covers emotional, psychological, physical support. It will be an adjustment too if your son is now diagnosed autistic. From my experience you have to really lay it on to get the support for ourselves and family. I have discovered resources that I would not have been told about had I not been searching. I hope you have have some luck with your next rheumy appointment. 🙂
I know this doesnt happen for everyone but I had a wheel chair but now I just need a stick. But as has been said there are things out there. When you have accessed all things that can help your daughter life will get a new rhythm. So hard for both of you. Take care.
Feel emotional after reading your post know exactly how you feel I have a daughter your age but have had ra much longer all her life so I suppose she doesn’t know any different but still feel guilty I can’t be a fit healthy mum for her we just have to do our best and enjoy the good days xx
so sorry to hear your struggling. we all know how you feel, it's such a roller coaster ride with this disease but keep your chin up and remember we'll never be broken xx
Your daughter is here to light your way. Cherish the moments and let her know how brave and strong she is and that she helps you in every way by just being by your side. This will help you not to feel so bad too. It’s a win-win. 💕
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