How do you live/cope with RA?

I don't quite know how to explain how I'm feeling right now - one minute I'm trying to pep myself up and encourage myself to get on with the day and try to ignore the constant pain I'm experiencing and the next moment I'm in tears with frustration with having to live constantly with the pain.

I'm so exhausted from lack of sleep and feel guilty for being so restless at night and disturbing my husband's sleep (Although he never complains, he's very caring and comforting) I'm also feeling physically sick (Probably from the meds and also from the pain) so I'm not eating much at all which doesn't help with energy levels.

I just wish I could have some time off from the constant pain. I'm always trying to be positive by thinking that no matter how bad I feel or how much pain I'm in there are always folks that are far worse off than me - with them having to live through conflicts and war, poverty, terminal illness - and I feel lucky that I don't have to live with that fear and that I have a roof over my head with clean, safe drinking water and feel safe.

I don't even know why I'm writing all of this. I guess it's a way to try to deal with things - and it helps to chat about things with folks other than my family and friends because I don't want to worry and upset them.

I don't want anyone to think I'm feeling sorry for myself because I'm not - I just think it helps to share how I'm feeling in the hope that I'm not alone in feeling this way.

How do you cope with the bad days? What do you find helps the pain? I'm still unclear whether heat pads or ice packs help as they both bring some relief but that relief doesn't last long.

Any tips, advice and help would be very much appreciated and I'm sorry if I've waffled, it's hard to put how I feel into words Xxxx

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  • I cope by doing what you have just done, just writing it down,putting it out there & knowing I'm not on my own because of you lovely people on this site & it gives me some comfort. Hope u have some good days coming your way love Michelle xxx

  • I am with you there. I have found a lot of support on this site. My husband too is supportive and understanding and I try so hard but I cant help taking out my frustration and anger at the pain and fatigue I feel all the time. Poor man. I try to pace myself and do things I enjoy such as sewing though this is short time spent as my hands start to play up. I also miss gardening but have started to get more potted plants so I can at least do something. Everything just takes longer to do now and I suppose I have to accept this. I find keeping a diary has helped in fact I keep a mood diary and a pain diary which I doubt anyone will read but it gets it out there. The thing I get frustrated with the most is health professionals always trying to say I am depressed. Angry, frustrated and of course I get low mood yes, but I am not depressed. just very angry......grrrrrrrrrrrrrr. Gentle hugs to you and I hope you have some good days. Joolz.x

  • I feel just like you I told my doctor what I felt like and he said yes there are people worse off than you but that will not make thing any better knowing that and not to feel guilty about feeling bad ,each of us have our problems and that's why you have come to the rite place my doctor recommended this site and I have made some very good friends that help me, I just get scared of rd and what is to come if its hard now how will it get later on in life ,

  • Your message is exactly how I feel ~ well done for managing to put it into words :)

    Unfortunately I don't have any advice, I just try and muddle on through and when I need a good cry I have one!

    Hope you find a way to deal with it, I am hoping that just comes with time.

    Take care of yourself xxx

  • You describe it so well, I work very hard at keeping a positive attitude but feel feel sometimes that RA is determined to break that state of mind.

    I have been so tearful since at least Friday, I am not depressed, I have bi polar which is controlled by medication.

    I like everybody else on here hurt, just to scratch an itch leaves that spot burning and feeling like it has been cut,( but nobody can see that)

    Today in a cafe I reached up to take a plate of crumpets from the waitress, a normal response by anybody, and promptly dropped it because it was too heavy. I reached out of years of instinct not reminding myself of my RA, but another day I would have been able to do that. However as you all know your body does not give you advance notice of how you are being and when. It would be so helpful if it did, save us all so much embarrassment, we could plan ahead.

    I was only formally diagnosed in July so this journey is like a game of snakes and ladders but mostly ladders ( I like this sentence , I read it somewhere else and it is such a good description),

    I am a manager of a charity with 30 volunteers and we help 250 people a month. But now my volunteers look after me. I don't so much as carry a cup except to drink from it. We all have a great laugh over it, calling me lady muck , sitting down and dishing out decisions, jobs and receiving guests when holding meetings. They do not see what I feel but they are more aware of what I should and shouldn't do and send me home when they see I have had enough. As embaressing as this is I am so fortunate to have a team around me like this.

    As much as I am grateful for their help, for husbands and families support , for all the knowledge and understanding I have of RA. I have seen first hand how much worse I could be but that does not stop the tears from flowing and the craving to lie on the floor any where at any time to rest and I don't care who can see me.

    You ask how some of us cope. I cope by trying to plan ahead with medication, know good days and bad days ( ie before or after medication or certain activity). Communication essential with all around, we use trigger words so that people around me know in one word how I am and what support I need. It saves asking for help and whinging about how i am. I lie on an electric blanket warming my back and with ice packs on my wrists, shoulders, elbows and hands to relieve swelling and heat spots. You couldn't write it in a book it looks so contradictory .

    I read this site all the time but don't often contribute, everybody else is doing such a good job of expressing that you are not going mad, you are not on your own. It is a great space to rant or share in a safe environment.

    Everybody copes in their own way, unique to them, what works for one my not work for another, so pince a few of everybodies ideas and find what works for you. There is not. Right way or a wrong way..

    You wrote your post this morning and maybe now within a few hours you are feeling a bit brighter. Life is full of great blessings and next thing you know you will be posting to help somebody else. I look forward to reading that.

  • Such a good way to describe RA - Snakes and Ladders - so true

  • everyone has given good advice so won't add anyting but just to say you're not alone , I feel just the same.. wishing you well xx

  • I've been doing mindfulness based stress reduction (MBSR) and have found that helpful. Essentially it's meditation. It pulls you out of catastrophizing your life. See if you can find Jon Kabat-Zinn's body scan meditation on youtube. A bath can be nice if the logistics are not too difficult. Are you able to sleep in a different bed so you don't have the additional worry of disturbing your hubby? Keeping positive is better than feeling doomed, but not if your positivity is focused on feeling better down the road. You'll find that this period of your life has slipped past without being aware of it. I know I sound a bit kooky. I feel like I've turned into a new age hippy while learning how to live with RA. But it's important to learn how to be okay with the bad days. You are not your body, and despite your RA, you are still whole.

  • hi karen i have been through a rough time with RA in and out of hosptial operation for joints but i do mediation india and help me with pain and feeling postive you got keep the faith and dont give what ver RA throws at youi have fibro aswell and fractured spine wrists with rods in fused thumbs but im still here fight the disease had reconstruction srgery on all my toes and tendons but that went wrong housebound at the moment but im still positve DONT GIVE UP HOW EVER HARD IT GETS

  • U wrote it because u need to and we understand . Im having a rough time and someone told me its like the beach . Good days u can walk along letting waves lap u but not focusing . Bad days just let the waves crash at u and dont fight it .. works for me . Its crap but it wont kill me and that's all that gets me thru

    . This board helps lots xx

  • WITH RA YOU CANT GIVE UP GOT TO KEEP JOINTS GOING HOW EVER PAINFUL OR END UP HAVING THEM REPLACED I HAVE BEEN THERE BUT STILL FIGHT ALTHOUGH HAVE BAD DAYS GOT TO HAVE FAITH HOPE AND BE POSITIVE HARD I KNOW

  • Hi jc2014,

    so sorry to hear about the way you are feeling just now. This is a terrible disease and you should not feel bad for needing to share how you are feeling. As everyone has said, sometimes it helps just to be able to get it all out and share with people who know what you are going through. I like possitive_attitude's comment describing it as like a game of snakes and ladders. I don't know where you are in the world but if you are in the UK and need to talk to someone please do call the helpline on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Or you can e-mail us on helpline@nras.org.uk

    Hope you feel better soon

    Regards

    Beverley (NRAS Helpline)

  • My limited experience thus far is to maintain a positive attitude, adopt a humorous approach to all you can. I watch african politics on tv.... its entertainment of a simple nature! Seriously I am extremely positive and I figure when I think ive got problems, I look around and im grateful for those I have as others seem to have far greater ones.

    Also dont internalise everything use this forum or other similar forums to vent or gain advice or opinion from people in a similar situation. Not all things can be resolved by those closest to you. Sometimes a fresh perspective helps.

    goodluck and take time to enjoy and appreciate simple pleasures

  • I often ask the same question, I have always had it, my whole life but I don't think I will ever come to terms with it.

    If thinking about other people who are worse off helps you to feel better than carry on but actually I think that might be making you feel worse.

    You seem to be trying to 'guilt' yourself out of feeling bad and that's a huge burden on someone who is already suffering.

    And you are suffering. It's a horrible disease. It's painful and exhausting and the medications are often nasty and painful or have grotty side effects. Allow yourself to feel angry and upset. You are allowed to feel sorry for yourself. You would feel sorry for a friend who told you that they had rheumatoid arthritis wouldn't you? So be sorry for you.

    When I was struggling with depression I read something that really helped.

    "Happiness is not an absence of suffering."

    and the recommendation which helped most is;

    "create a life worth living"

    You can't get rid of the RA. It's there now. That is a suffering, but you can be happy as well. Plan to do things you enjoy. Treat yourself to memorable experiences. I go and see live music, go out to eat. Even planning for a friend to come round for a cup of tea (even better when they bring cake).

    When the pain is really bad I try and find things to make me laugh, watch old comedies, stand up, read Catlin Moran's How to be a Woman (I could quote it now). Oh and (warning) have lots of sex, much to my partners joy. Heck we are all grown ups. The pain needn't stop you as long as you and your husband are gentle. I've actually found gentle sex reduces my pain (probably the endorphins). Sex aside, touch can really help. Inflamed joints can make our loved ones nervous of hurting us, but kisses, cuddles and holding hands is essential for feeling safe and secure.

    Do you have a pet? I have a cat and a couple of guinea pigs. Stroking a pet has been scientifically proven to have health benefits and it certainly works for me. I can't clean out my pigs cages but my partner and daughter are happy to do this and cats are very low maintenance.

    Speaking of low maintenance. If you haven't already stop ironing. I iron shirts. That's it. If you have a good day. That is not your cue to clean your cupboards out. Get your groceries delivered or get someone else to get them. Don't jobs which nobody except you will notice.

    It might also be worth asking for your pain medication to be reviewed. Many people fear that taking pain relief for a chronic condition can lead to addiction but actually addiction to pain killers is pretty rare unless you have a history of addictive behaviours.

    I feel sorry for you. You're in pain and struggling. But feel optimistic for you too because you will find your ways of coping. xxxx

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