Mum of 2 kids under 3 and struggling

Hi all.
I’ve never posted on here before so not sure who I’m reaching out to or what to expect...I’ve had JIA since I was 7 years old and have always been taught to be brave, get on with things and achieve, which I feel I always have through my life and I’m proud of that. I have never let my arthritis hold me back. Ever. However, fast forward to now, I am 30 years old, happily married with 2 beautiful boys under 3 years old and I HATE to admit it but I’m struggling. My new infusion (abatacept) isn’t controlling my pain and swelling. I’m finding everyday, even just getting up and taking basic care of my boys and family Really really hard work. Emotionally I feel like I can’t keep it together anymore. Today at my infusion where they pumped me with more IV steroids to get the swelling under control, I just feel like I’m failing and I don’t want to be strong anymore.

I guess my question is how do people cope with young kids and the crippling pain everyday when the drugs aren’t working anymore? I’m sorry this is a very mood busting post, this is not me, but I don’t feel like I want anyone of my friends and family to know how I’m feeling as don’t want to put it on them and show my weakness.

Thank you if you’ve read until this far. Kristina.

Comments

  • Al
    Al Member Posts: 169

    Hi and welcome,

    It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis

    There are many here more than happy to share their experience as you share yours.

    This link is for general information regarding any type of arthritis

    About arthritis

    https://www.versusarthritis.org/about-arthritis

    Find out more about the different conditions, treatments and how to manage your symptoms.


    if you have a specific question please post in the Living with Arthritis discussion or for general chat in the Chit Chat discussion. Just join in wherever you feel comfortable

    Al

  • Craig
    Craig Member Posts: 1

    Hi Kristina,

    Sounds like things are pretty tough for you at the moment.

    I'm in a similar position, diagnosed at 4 now 38, multiple joint replacements, active disease and two children, one and five. I'd never let the disease hold me back but as I've got older I've become more physical limited. Everyday can be a struggle at times. My consultant is trying new treatments but at the moment nothing seems to be working. I can find it hard to pick my little ones up and can't do the more vigorous activities my 5 year old wants too. Life can certainly feel like it's getting on top of me.

    On the bright side, as she's got older my 5 year old has become amazingly understanding about my physical limitations and understands that I can't do everything that other dads might. She's very cheeky and makes fun of my for being slow however she's helpful, patient and won't let me hold my self back.

    As for advice, I'm not sure I'll be able to tell you much that you don't already know but here goes. Make sure you let your consultant know how you are feeling. Talk to them about your treatment and drug plan and try alternatives where things are not working now.

    Talk to your children and let them know how you feel (this was really difficult for me at first, wanting to be the strong dad, but it's amazing how empathetic children can be even when they are so young). Ask for help from your husband and family when you need it. (I know you have said you don't want to appear weak, but I'm sure they won't see you that way).

    Also make sure you you take time for yourself. I've always found an extremely hot bath and several glasses of wine when the children are in bed, is amazingly helpful when I'm having a bad pain day.

    I hope this can be of at least some help.

  • CarolG
    CarolG Member Posts: 26

    Hi @Craig and welcome,

    It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis.

    We have a range of forums and there are many here more than happy to share their experience as you share yours.

    This link is for general information regarding any type of arthritis

    Our Helpline is also a great source of advice and information too and their details are as follows -

    0800 5200 520

    With our helpline, online information and arthritis virtual assistant, you don't need to face arthritis alone.

    Call us for free Monday – Friday, 9:00am – 8:00pm

    There are a range of forums for you to get involved with but thank you for such a helpful and insightful first post. Take care and keep on posting - let us know how you get on,

    kind regards

    CarolG

  • stickywicket
    stickywicket Member Posts: 27,224

    Kristina, let's get one thing straight – you are not weak. Not by a long chalk. I got RA at 15 and struggled with two small boys and I know what it takes. It's an enormously difficult and also very lonely task because none of your contemporaries, however kind and caring, can really have a clue.

    It sounds as if your meds aren't really working. What does your rheumatologist say about that? IV steroids don't sound like a long-term solution.

    I'm wondering how much you push yourself normally. I had to learn that a tidy, clean house and a grumpy, achey Mum was not a good plan. I had to learn to do gentle things with them – reading to them, sedentary stuff – and cook simple, albeit nutritionally good meals.

    I'm also wondering how much your husband is aware of your difficulties. We can be our own worst enemies in terms of stubbornly shouldering all the work, grief and pain. It took me a long time to realise that shutting Mr SW out did neither of us any good.

    It also helped me a lot when I finally accepted that I needed at least one good friend who really knew me for what I was and not who I was pretending to be. Good friends are gold dust. They can make that hardest day better.

    Have you thought, for a start, of ringing our Helpline people? They won't judge you at all just listen and try to help. Sometimes all we need is a bit of space and kindness.

    Whatever you do or don't do please remember it's not weakness to acknowledge our difficulties. It's strength. It takes courage and we become stronger for it.

    I apologise in advance for possibly not returning to this thread as I find myself very busy right now but I wish you well and I do hope that, one day, you and your two little fellows will have as much fun together with their own sons as I do with my sons and grandsons.

    P.S. Hi Craig. I like your take on it. Some very good suggestions there. KBO as we say.

  • Mike1
    Mike1 Member Posts: 1,992

    I can't offer any advice from an experience point of view, being a grumpy 62 year old divorced bloke with no kids (I do have a cat though!). Look on the bright side, you are young, happily married with 2 beautiful boys which is a huge positive. You need to talk to your Consultant about your meds asap and also your other half, he probably sees you struggling and wants to help but may not know how to for fear of upsetting you. Also make use of the helpline or simply talk things through on the forum. After 20 years of OA I am starting to learn that there is help out there if you ask for it! I really hope that things get better for you soon.