Introduction new to this group

Jjm564
Jjm564 Member Posts: 3

My name is Jacqueline mother of 5 .grandmother of 3. All grownup now. My youngest is 19 and she helps me a great deal. I was diagnosed when she 1 so she s never really know me well.

Hi all living with Rhemotoid arthritis now for 18 years. What a journey. It's not been easy. I have tried several treatments over the years that work for a bit then stop working injections, infusions etc. Very draining on my mental health. Recently alot of flares so bad. The pain unbearable and using more and more steroids just to cope, and regularly use morphine.

Housebound don't really go out, no life everyday is basically the same. Get up struggle, give up .spend mist days in bed. What a life!!!! No life.

But I'm still alive and pray that my situation and circumstances will improve.

I think I need to seriously consider getting a carer. Sorry to be so doom and gloom but that's my life atm.

Comments

  • SarahGF
    SarahGF Moderator Posts: 213

    Hello @Jjm564, welcome to the Online Community! It's lovely to have you join us.

    I see that you are living with rheumatoid arthritis and are having to manage worsening flare-ups, which is understandably taking a toll on your mental health and quality of life. There's no need to apologise for sharing the reality of your circumstances, this is the perfect place to do so as you will find many who can relate and offer support.

    I have included below some links that I think you might find useful:


    Hoping to hear more from you around the Community soon.

    Best wishes, Sarah (moderator)

  • Jjm564
    Jjm564 Member Posts: 3

    Morning all its the morning after the night before. Pain still around both knees are very painful this morning and of course my hip is it's usually painfill self. I forgot to mention in my introduction to this group I am awaiting my right hip replacement which is completely damaged. Most days it's so painful. My rhemy team recommendations me to have an injection under local anaesthetic to control the pain. but I've since changed my mind and would rather have the hip replacement instead.

    So I await till it's my turn to have it done. In the mean time I carry on. Any ideas in regards waiting lists and the operation itself.

  • Jona
    Jona Member Posts: 390

    Hi Jjm564,


    Im so sorry you suffer so it’s really tough for you I know 😊 you could ask them to put you on the cancellation list just contact the appointments team at the hospital your having it done at you could ask your gp to write to expedite your operation you could have the injection just to give you some relief I’ve had one in my shoulder and elbow and it really helped.

    Keep your chin up and take care 💐

    Jona

  • stickywicket
    stickywicket Member Posts: 26,619

    You seem to have had an awful 20 years, Jacqueline. To be on either steroids or morphine is not good but both.....! I'm so sorry.

    I'm sure Jona is right that it would be a good idea to have the guided steroid jab while waiting for the new hip as waiting lists are currently horrendous.

    Also, as a long-time RA and OA patient with several joint replacements I'd advise you to get some physio advice so that you can be strengthening the hip muscles while waiting. The surgeons can only put a new joint in place. They can't make it actually work if we don't keep our muscles strong enough to support it both before and after the operation.

    Also I'd suggest you get an occupational therapist to come out and advise you on adaptions and gadgets to keep you mobile. You can self-refer by contacting your local Adult Social Care Dept. I really don't know where I'd be without all sorts of stuff from my walk-in shower to my electric can and jar openers. I'm Mrs Gadget!

    It's very difficult to keep mobile when pain tries to stop us but I've always been taught to do weight-bearing ones when 'good' and just gentle range-of-movement when flaring. The latter helps us to keep the range of movement we have. Not totally, as one glance at me will show😉 but enough to keep going, keep achieving tiny successes and so feeling good about ourselves.

    The hip ops themselves are OK. I've had two and so has my husband. Most people find the hardest bit is sleeping on one's back for 6 weeks afterwards but they don't even insist on that now though my husband did find it best in the end.

    Do you use walking aids? Getting out is so useful and encouraging even when we can't walk far. I fall into that category but have recently found a rollator which will just about accommodate my very stickyout feet, has brakes I can actually use (Yay!) and has ergonomic handles which, though my fingers are far from ergonomic, I can manage to place my hands on. I can't walk far but I try for a little further every day. My aim is to finally reach the local hostelry but I fear that's a way off yet😁 An excellent, encouraging objective, though😁

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