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Living with RA

Hello everyone,

This is the first time I have used an online platform for arthritis support.

I was diagnosed with JIA aged 2, So have lived with it all my life.

Usually I have “ get on with it “ attitude and usually independent & determined.

I have had a flare up, particularly in my ankle for the last 18 months . Scans have shown “loose bodies ” and wearing of the joint.

I have been referred to a surgeon, but due to COVID-19 my appointment was cancelled, and I am awaiting a new appointment which I have tried chasing but completely accept the pressure they are under right now.

Meanwhile , my mobility is suffering and I have started using crutches around the home.

The pain is the worst I have experienced ( I’ve also had several other joints replaced)

I have tried using joint rubs, heat packs and baths with no relief.

My husband has taken on more of the household chores, he tells me to sit and rest, while he cooks dinner etc, but it’s making him so tired, he works full time and myself part time.

It really is starting to put a strain on us both.

I want to be able to do more, but physically can’t.

I wondered if anyone had any tips or going through the same thing? Thank you xx

Comments

  • Aj_xAj_x Posts: 87 mod

    Afternoon @MumwithRA

    Firstly thank you so much for reaching out to the Online Community Forum.

    I am so sorry to hear about you getting JIA at the age of 2 Years. At that age you probably didn't know any better and being a child just carried on with life and going to school and playing with friends etc.

    I totally understand about the Flare Ups. I have Rheumatoid Arthritis and had had it for 10years after being pregnant and having my son. When you have a Flare Up you can't do anything. Unfortunately you have to listen to your body and just rest and let the Flare Up go. It will but if you continue to do things then it will take longer.

    All you can do is keep chasing up the appointment. Have you tried asking to speak to the consultants secretary or emailing them explaining how much pain you are under etc.

    If you can in regards to your mobility try and get one of those roller walkers rather than use crutches. You might be putting too much pressure on your joints using the crutches without realising and making them hurt more.

    If your husband is telling you to rest then please listen to him. I know it will be hard to just sit there and watch but it is probably tiring him out more telling you to go and rest and you not listening. Go onto the forum regarding Benefits as your Husband might be entitled to Carers allowance or something similar. Maybe have a chat with someone.

    I have attached the Versus Arthritis website and the Helpline Number if you wish to speak to someone in person.

    One thing you have to remember though now you are a member of this Community you are not alone, you are part of our family!


    0800 5200 520

    Stay Safe

    AJ_x

  • frogmortonfrogmorton Posts: 25,561 ✭✭✭

    Hello@MumwithRA

    Lovely to meet you.

    It sounds as though you still have a 'get on with it' attitude. You have chased your surgery, but accept with COVID it isn't likely to be soon sadly 🙄

    You also sound as though you have a lovely husband who cares very much, but are worrying he might be overdoing it. At times like these I tend to be a lazy cook myself. These are the times when I buy ready cut veggies onions the lot and shove it all in the instant pot to cook. A slow cooker is also great for this. I have also (post operatively) 'cooked' rubbish like microwaved food for my kids in the past anything to make life easier.😳

    Have you thought about a rollator (I know they aren't exactly glamorous) you can get them with trays and might be easier to carry things around the house. After all this should really only be short term (maybe medium ) but a tray can be such a help.

    Also giving him and you the night off with the odd takeaway does no harm at all I am certain.

    Just try to be kind to yourself and not beat yourself up it isn't your fault and your lovely husband knows this and clearly cares very much for you ((()))

    Love

    Toni xxx
  • SuzieBlueSuzieBlue Posts: 3

    Your comment made me cry. Only because you said exactly how I feel. I am suffering a lot at the moment, work part time and my husband has taken on a lot more. He gets so tired with working full time, we have teenage daughter and my mother also lives with us. She is extremely selfish and expects me to wait on her hand, foot and finger. I feel so guilty if I rest, but some days can barely drag myself out of bed. I am waiting to start my treatment. I feel for you. Sending support. 😘

  • frogmortonfrogmorton Posts: 25,561 ✭✭✭

    Oh @SuzieBlue

    You are just like I was when i first joined the forum.

    I just felt so accepted, validated and supported that I must have cried every day for 2 weeks.😓

    I'm not impressed with your Mum though.....I think your husband and daughter might need to have a word with her😮

    My fingers are crossed that your treatment will work quickly for you and be the right one first go. Do hang about this forum is a fabulous place ((()))

    Take care

    Toni xx

    Love

    Toni xxx
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