Feeling battered emotionally, after 27 years with RA

jojo03 Member Posts: 77
edited 31. May 2013, 14:32 in Living with Arthritis archive
Hi All

I've had RA since I was 18 - I'm now 45. I had two TKR's in 2011, which thankfully have left me mostly pain-free in that area, but with very poor bend, due to muscle wastage and tissue damage over the years. I haven't had the benefits I expected, which has left me a little downhearted, although grateful for the lack of pain. I've been back in touch with the hospital physio, and had a further 6 weeks of hydrotherapy, which doesn't seem to have made much difference. I'm now thinking of seeing a private physio just to try and get a bit more bend going.

Also, I've been on various meds over the years, am currently on Sulph, Hydro, Naproxen and paracetemol. We tried for a baby for years, had fertility tests which came back ok, took myself off the Naproxen for as long as I could, as I know this affects fertility, but still nothing, and at my age, I'd be lucky to get pregnant now even if I was fit and healthy.

I've been to see my GP, as I've felt so emotional and tearful over the last few months. She said how well I've coped over so many years, and she knows I have the strength to keep getting on with it. It's nice to hear someone saying how strong you are, but when you're not really feeling that way yourself, it's like banging your head against a brick wall, asking for help and not getting anywhere.

I don't feel depressed as such, and don't want to add anti-depressants into the mix - it's just that I feel so much has been taken away from me with this awful disease - I can't have my own family, I can't have a full-time rewarding career, I can't even ride a bike, which is something I'd imagined I'd be able to do after the new knees.

Sorry, this is a really big moan, but I'm guessing I won't be the first or only person to offload on this forum in the hope that it will make them feel a bit better! Family and friends understand up to a point, but there's only so much complaining you can do when you know you should really be grateful for what you've got.

Thanks for listening,
Jojo x.


  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Being grateful for what you've got will help enormously in the daily battle with arthritis, jojo03, but sometimes we all have to just put our heads down and weep for what's been lost. It doesn't mean that you're giving in. It doesn't mean that you're going to remain in a 'poor little me' state. It just means that you're being human and realistic and need to acknowledge the cr*p.

    Are there friends and family that you can talk to? I think it's good that you can share your feelings with us and certainly we can identify with so many of them. I've found, though, that it's good to keep Mr SW on board rather than trying to protect him from my pain. He suffers from my RA too, albeit differently.

    I was a bit disappointed after my first two TKRs in 1981. I'd fondly imagined that my legs would be straight but, apparently, the ligaments were so shot there was no chance of that. I soon realised that lack of pain made up for that, though. The good thing was that, by the time one was revised 3 years ago, techniques had advanced and he was able to 're-wire' some stuff which made it straighter than it had been in years although it would still win no prizes for it :wink:

    I'm sorry you didn't manage to conceive. I wonder how much of your current sadness is due to acknowledging that. It must seem quite final. Would you want to consider adoption or fostering?

    Have you thought of voluntary work? It can be very rewarding and nowhere near as demanding as a career.

    I guess I'm just chucking thoughts and ideas at you. I'm not sure you need them. You've obviously coped extremely well for many years and are quite capable of formulating your own thoughts and ideas. I suspect all you really need from us is a bit of space in which to acknowledge the bad bits and some sympathy and empathy. I send you a lot. ((()))
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
    Hi JoJo,
    Sorry you're feeling glum, Arthur is so waring it takes so much of us, I can't imagine what 27 years of it must be like, I feel run down after 9!
    I know its hard but please try to think of all the positive parts of your life, maybe try to find a hobby you can do that's not too affected by your Arthur at least that way you can do something consistently and maybe it would help give a little focus away from all the c£%p.
    I think extra physio would be good if u can afford it as they should do a bit more for you.
    Don't give up hope of the bike yet is still quite early days.x
  • jojo03
    jojo03 Member Posts: 77
    edited 30. Nov -1, 00:00
    Thank you, both of you, for your replies.

    Sticky, yes I think a lot of the current sadness is due to not conceiving. I just feel like I've been limping along for all these years when friends have been living their lives to the full, having children and energetic holidays, etc. Perhaps now is the time to recall how much they moan about their kids sometimes!!

    You're right Lizzie, a hobby would be good, and I have been looking into a couple of things, although not with much enthusiasm. I think I should give myself a shake and get on with things.

    Thanks for letting me have a moan. I do have a fab family who have put up with my aches and pains and moans and groans for years, but sometimes it's just nice to talk to people who get how I feel.

    Thanks xx.
  • Misssweden13
    Misssweden13 Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi jojo03

    I totally understand and It's OK to moan! It's like grieving sometimes having this disease especially after turning 40. There are so many things that others can do but you can't.

    I am myself 45, have had RA for almost 25 yrs. I have no family of my own.
    I get sad sometimes and I think you have to let it out!

    Take care
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi Jojo

    You moan anytime you like I am sure you will have felt a wee bit better after you had written things down. It is no wonder you are feeling the way you are after all the years of living with RA, I personally don't know what it's like living with RA as it is OA I have, but, I also have a neurological condition which affects a lot of my body so know what it's like living with chronic pain. I never had any children myself the reason I will never know but I focused on all my lovely nieces and nephews also now the great ones, I do occasionally get a wee bit sad but I always think it was for a reason. Focus on that fab family of yours and come on here and tell your extended family how you are feeling, that's the way I feel about this forum................take care Jojo hope you are feeling a wee bit better now...................Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Jojo,

    I just wanted to send some hugs and encouragement (((((( :) )))))). this disease robs us of lots of things that others will never understand and it's good to share them with "those in the know". I would encourage you to share honestly with the other half, they live it with us- but sometimes it's so hard for us or them to find the right words to express what we feel.

    Keep plugging away at the physio, and try out some hobbies to enrich your life. Years ago before RA crept in I dreamed of retiring from teaching and learning to play the piano and to paint- well the bent and sore fingers have put paid to that :? - but having plucked up the courage to take early retirement I am so enjoying the freedom to read a book, take a stroll in the fresh air and generally take time to "smell the roses". I hope you find something that will enrich your days too.

    Deb x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello jojo03, I have read your post a number of times but not replied because I didn't know what to say, until now.

    I am childless by choice so that aspect of your sadness doesn't affect me but, on thinking about your words, it sounds to me as though you are grieving for what could, should and might have been. Grief is a natural emotion and response, arthritis robs us of so very much (my keenest loss is not being able to walk hand-in-hand with my husband thanks to my needing crutches or a rollator) but why should you keep up the brave face? There's nowt wrong with letting that slip every now and again and that's where the forum comes in useful. We are good listeneners / readers and we understand the pain and turmoil that this disease can bring. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • jojo03
    jojo03 Member Posts: 77
    edited 30. Nov -1, 00:00
    Thanks so much to you all for your responses - it really does help to talk with people who understand. Yes, the doctor mentioned that I'm going through a kind of grief for things I haven't achieved. It seems silly to miss something you've never had!
    I do sometimes feel alone with this disease, family are sympathetic and supportive, but it takes people who have experienced it for themselves to really understand, and that's what's so good about coming on here.
    Thanks for your kind words and support - I really do appreciate it xx.
  • Tubby
    Tubby Member Posts: 177
    edited 30. Nov -1, 00:00
    I have been having a bad couple of weeks and you have had the good ole moan which I have wanted to have for ages (although not necessarily for all of the same reasons). I switch from grief to frustration to being happy with my lot and all the way back again. It's good to let it out -thank you for sharing it with us all as it helps us all feel less alone with this disease. (((()))),sent your way.
  • barbara12
    barbara12 Member Posts: 21,102
    edited 30. Nov -1, 00:00
    Hello jojo03
    Don't you apologize for the long moan ,it will do you good to unburden yourself.
    You have had so much to contend with in your young life...like you say its not always easy to talk to family, has for the as for the ADs they can help short term , you don't need to stay on them, but I understand you not wanting more meds..
    I do hope you came through this bad patch very soon...but dont forget we are always here ((((())))xx
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    jojo03 wrote:
    Yes, the doctor mentioned that I'm going through a kind of grief for things I haven't achieved. It seems silly to miss something you've never had!

    I don't think it's silly, jojo. I suspect it's probably not so much missing something you've never had as acknowledging that now you probably never will have it. That's tough and not something that one can just snap out of easily.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran