Impact of RA on my daughter..

[Sapphire1701]

hi everyone,

I come here when I need to share my RA journey when others don’t understand..

Alongside the other RA stuff, since diagnosis last year I’ve been having a really difficult time mentally. I live with trauma based issues, which definitely have got worse since RA..

I’m a single mum to a 15 yo daughter - doing GCSE’s this year..

these last few weeks have been particularly bad for me, but I hadn’t really appreciated the toll my illness has taken on my daughter. She’s been crying a lot recently and started hair pulling which I know is her anxiety.. she’s not a talker and keeps all her emotions in, but tonight she finally broke down and said ‘I just wish we could go back to this tine last year’.. which basically is before I got ill.

At times when my ra was really bad in the beginning, my daughter had to help cook, cut up my food, open jars, help when I was walking..even do the gears in the car on occasion when my wrist was really bad. Albeit a year on medication (which I’m currently off due to mental health) my joints are a lot better than they were. But I still get v overwhelmed, and often my daughter has to remember stuff for me, or do directions if we’re out somewhere..

We also had our 3 year old dog pts earlier this year as she developed really bad dog on dog aggression; which I blame myself for (I blame myself for everything) because I couldn’t cope and her behaviour was escalating..

so all in all it’s been a very difficult year. My daughter herself has had 2 spells in intensive care.. and on the while my, and our life has been tough.

Pre RA I was always a survivor; I was quite physically strong and could work and provide. Since diagnosis I now only work 2 days and we rely on universal credit (god knows how I’ll cope when that runs out)

But my reason for posting is I don’t know how to help my daughter.. trying to get her counselling through the NHS would take forever, and I feel so guilty that this is all my fault. I honestly have worked so hard to be a good mum to her and now I just feel like I’m failing, I’m struggling so much myself..

I don’t know if others have been through similar.. I just needed to write all this down I think..

[Madmusiclover]

oh my lovelies! Ok I suggest you ring the NRAS helpline. 0800 298 7650

They will know which services she could access: a young carers group? I found these. I bet there’s more.

barnardos.org.uk/get-suppor....

carers.org/getting-support-...

Have you mentioned how things are to the school? They have counsellors. The situation is NOT your fault! Come back and let us know what you find. Xxx

[Bethany02]

God I feel all the pain of your message and without being pitying I wish with all my heart I could help you more. If you contact the NRAS as suggested also go online putting in benefits advice no matter where in the country you are there will be lots of people who can help citizens advice helped someone I know. You daughter as well as you need as much help and support as possible. Contact her school speak to her year head send them the email you sent us it speaks volumes. Contact your nurse specialist send her this too, your GP same thing. I also seen a message on here about a meeting in December called parenting with inflammatory RA it may help. I think both you and your daughter need support not help your a strong woman to write what you did. I live in Scotland if I could help you in any way personal I would just pm me. Reach out to everyone you can you've obviously managed for so long it's time now to get the help you need. ❤️

[Durrell]

Oh Sapphire, my heart goes out to you, what an awful lot you’ve had to deal with on your own, you’ve done remarkable till now, so don’t be hard on yourself. I think ML & B2 have given you the advise you really need, give Nras a call, they will be able to give you the support & guidance you & your daughter so truly need at this time, You really have faced many challenges with no network support in place, this time will pass but get the help you need at this present time. B2 was right you are strong to have written your post & im sure all reading it will be moved by your story & what you’ve been dealing with, Big Virtual Hugs 🙏🏻

[medway-lady]

But perhaps you’re feeling bad becuase you are in a difficult situation and the RA is simply a hook to hang all the issues on. I don’t know but your situation seems to me to be extremely complex and it would be a good idea to get family counselling. Her school may have a counsellor already so as a starting point ring her school and ask advice.After that go to the GP as a young vulnerable person must surely be prioritised especiallly after being hospitalised. Also do you have any family around? All this is just places to start and then go from there. Exams are important so get onto her school asap. I hope your feeling better soon.

[Sapphire1701 in reply to medway-lady]

I should have clarified my daughter was in intensive care as a baby and then child.. it was just a reference to how much we’ve been through.

I’ve coped incredibly well in the 14 years until I became ill; so whether it’s a hook, a correlation or a causation. This year has been our / my hardest. So perhaps just a coincidence with my RA.

culmination of many things I’m sure.

I will do everything I can for her.

Thank you

[wilbertjellyfish]

Stop blaming yourself. Life has dealt you a rough deal. Your doing your best, no one can ask more.

[Gottarelax]

Hi Sapphire, I have a 15 year old daughter too who is approaching GCSEs. I was diagnosed just over a year ago and was almost bed bound for a while. My daughter also suffers with anxiety. She also has been through a lot with her health/wellbeing. It's so tough! While your health may have played a role in that anxiety I suspect it's not the main cause, a lot of teenagers coming up to GCSEs struggle with it. My daughter's anxiety was a feature before I became ill. I am sure that my health hasn't helped but unfortunately we cannot totally shelter them from these things. I was about the same age when my mum also become chronically ill so I know it from both sides. Did it affect me? Definitely, but not necessarily in a bad way. I hope it made me more independent and hopefully understanding. Happy to talk further in private messages if you like.

[medway-lady in reply to Gottarelax]

That is a lovely post.

[Durrell in reply to medway-lady]

Yes I agree with you 🌸

[Sapphire1701 in reply to Gottarelax]

Thank you for sharing your own situation with your daughter and also about your mum too. This really helped me from a different perspective, so thank you so much x

[oldtimer2]

Just to say that when I was 15 years old my mother developed what was thought at the time to be pancreatic cancer (it turned out to be chronic pancreatitis). It was a very difficult time as she was in and out of hospital . My sister had left home and was living in London, so I was the carer as my Dad was disabled and needed help with some aspects of daily living. We lived in a small village an hour's journey from the hospital and I don't remember any help being offered. I was taking my O-levels then (a long time ago) and, in fact, I think it helped me that I fiercely felt they were important for the future.

It wasn't anyone's 'fault'. These things happen to people and they make you stronger. It may seem the bottom of the pit right now but you have done the right thing by writing about it, the first step for getting some support and help. Concentrate on the now and getting through now. Things will improve with your health and your daughter will be able to see that the bottom of the pit has a ladder out of it!

[marie66]

Hi depending where you are support will be different but I’d start with your daughters school. Here (Scotland) schools have a young carers worker attached who works with schools and families to identify and support young carers. All other good advice has been covered. Good luck 😊 M x

[tyncwmmarchhywel]

Hi Sappire, you seem to have had the best advice from our forum these fellow suffers are brill,sorry cant offer practical advise dont know enough , but my input will be a prayer tonight, a big welsh cwtch. to you and your lovely daughter. xxx.

[BillyJayDuncs]

Hi Sapphire1701,I just wanted to reply to say how difficult it all sounds and that I hope the advice on here that others have given so well is helpful for you. It's hard enough with RA but you have so much more to manage currently.

I am so sorry to hear about your daughter's anxiety but it certainly isn't your fault. Sadly so many teenagers (and younger) are struggling with similar difficulties (part of my job is supporting families around this). My son also did a few years ago, definitely not helped by the isolation from lockdowns. And it's heartbreaking as a parent and the guilt you feel. And also so hard when there seems to be no help you can access from CAMHS etc.

Young Carers sprung to my mind straight away like others mentioned. I'm not sure where you are based, but I also wondered about whether your local Early Help team could provide any support, or whether there would be something similar to Golddigger (an amazing charity based near us) that she could access.

Good luck accessing some support and sending my thoughts

[Sapphire1701]

thank you all for your lovely messages.. sometimes just writing down and sharing helps so much..

and yes agreed I think there is additional background anxiety for her re GCSE’s, the future etc.. a lot of pressure all round.

young carers has already been offered to us; but with a v long wait list.. as are all services these days..

but thank you again to all, I’ve really appreciated the kind words and support x

[Mmrr in reply to Sapphire1701]

You are not alone, the forum gives you space to offload, and receive support. Your story struck me as one coming from a strong woman who needs support over a difficult spell.

There is lots of good advice on your replies remember this too will pass.

[MissMinto]

Hi Sapphire,

Find out if your GP has a Social Prescriber within the practice - they can be really helpful in linking you up with additional support around a multitude of issues.

Writing this down is a great catalyst - there’s nothing like a good ‘dump’ to free up space so some light can get in.

Another option might be to contact The Wren Project - it’s a listening service for anyone struggling with an autoimmune condition. It’s offered in batches of 6 x 1.5hour sessions, over Zoom or phone if you prefer, for you to offload any and everything that’s causing you distress. Oh and it’s free.

wrenproject.org/