Rheumatoid arthritis … A few weeks in !
tanyakent
Member Posts: 23
Firstly I’d like to apologise for my absence been a roller-coaster of a few days, up-down-up-down-up-down
Seem to be having more bad days than good lately, and admittedly it’s defeating me, don’t seem to be coping with the pain or the exhaustion. I really feel like people are not understanding which makes me feel like I’m in this alone. My family seem to think there is an easy fix and that if I just eat the right foods (I don’t eat allot) ill somehow have a miraculous recovery, it like they need me to be fixed for their own acceptance. Today I wanted a cup of tea for my breakfast (What a fail that was) my hands are rather bad today and I didn’t have the strength to pick up the kettle to pour into my mug, so I shouted my mom for some help, she just kind of looked at me with a blank expression and said what you mean you can’t do it? And all she seems to keep saying is I don’t think you have RA and you might get to see your rheumatologist and they may say it’s a mistake, it’s like she doesn’t believe the pain I’m In, or I’m exaggerating it or something. I think it’s because it’s all happened so quickly and I’ve gone downhill so fast she doesn’t seem to accept it, maybe it’s just me but I get the feeling she doesn’t believe me.
I’m doing my best to look ok and to seem as though everything is fine but the pain just gets so bad some days I break down, I almost feel sorry for my partner Dave because he gets the runt of it all.
University: So I’m back at uni now and it just shows how fast my RA has developed. Writing is proving to be very problematic 4 hour seminars are just writing is not something my hands seem to be coping with.
Pain: I’m not going on go on about pain today as its depressing enough coping with it but todays a bad day. Me and Dave were meant to be going out for a meal later .. I doubt that’s going to happen.
Tattoo: I had a tattoo a few years ago of a humming bird.. they are symbolic for good health or so they say, and I had keep fighting stay strong wrote alone side the bird, though it may seem strange to have a symbol of good health imprinted on my skin for the rest of my life I had it to always remind myself to never give up and to stay strong and keep fighting. I always look at this tattoo to remind myself of this, normally I smile and I pick myself back up and fight on but the last few days have proved hard, I almost want to just hide away in bed and feel sorry for myself ha ha.
I would like to apologise for a not so positive post today, im sure I will cheer up and man up over the next few days.
Just again a couple of questions: does anyone on here get sever chest pain ? and I’m seriously suffering with my ankles at the moment and I’m not seeing my rheumatologist until march 5th .. is it worth popping around to see my GP?
As always thank you to you all and I hope you are all doing well !
Seem to be having more bad days than good lately, and admittedly it’s defeating me, don’t seem to be coping with the pain or the exhaustion. I really feel like people are not understanding which makes me feel like I’m in this alone. My family seem to think there is an easy fix and that if I just eat the right foods (I don’t eat allot) ill somehow have a miraculous recovery, it like they need me to be fixed for their own acceptance. Today I wanted a cup of tea for my breakfast (What a fail that was) my hands are rather bad today and I didn’t have the strength to pick up the kettle to pour into my mug, so I shouted my mom for some help, she just kind of looked at me with a blank expression and said what you mean you can’t do it? And all she seems to keep saying is I don’t think you have RA and you might get to see your rheumatologist and they may say it’s a mistake, it’s like she doesn’t believe the pain I’m In, or I’m exaggerating it or something. I think it’s because it’s all happened so quickly and I’ve gone downhill so fast she doesn’t seem to accept it, maybe it’s just me but I get the feeling she doesn’t believe me.
I’m doing my best to look ok and to seem as though everything is fine but the pain just gets so bad some days I break down, I almost feel sorry for my partner Dave because he gets the runt of it all.
University: So I’m back at uni now and it just shows how fast my RA has developed. Writing is proving to be very problematic 4 hour seminars are just writing is not something my hands seem to be coping with.
Pain: I’m not going on go on about pain today as its depressing enough coping with it but todays a bad day. Me and Dave were meant to be going out for a meal later .. I doubt that’s going to happen.
Tattoo: I had a tattoo a few years ago of a humming bird.. they are symbolic for good health or so they say, and I had keep fighting stay strong wrote alone side the bird, though it may seem strange to have a symbol of good health imprinted on my skin for the rest of my life I had it to always remind myself to never give up and to stay strong and keep fighting. I always look at this tattoo to remind myself of this, normally I smile and I pick myself back up and fight on but the last few days have proved hard, I almost want to just hide away in bed and feel sorry for myself ha ha.
I would like to apologise for a not so positive post today, im sure I will cheer up and man up over the next few days.
Just again a couple of questions: does anyone on here get sever chest pain ? and I’m seriously suffering with my ankles at the moment and I’m not seeing my rheumatologist until march 5th .. is it worth popping around to see my GP?
As always thank you to you all and I hope you are all doing well !
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Comments
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Hi Tanya. I’m sorry it’s hard going for you right now and it’s tough when those around don’t get it although it’s very, very hard for people with no experience of it to get a grasp of just how difficult ordinary life is for us, especially at first. I noticed in an earlier thread of yours Dreamdaisy recommended googling The Spoon Theory and There’s a Gorilla in my House. If you haven’t already done so, these are very good methods of helping people close to us to understand the impact of RA. They, too, are having to come to terms with things. It’s different for them but still hard.
As for foods, many of us have foods which we feel help or hinder our joints but, officially, Arthritis Care simply recommends a normal healthy diet. You say you don’t eat much so do try to ensure that what you do eat has good nutritional value. You mightn’t notice it helping but, if you don’t get all the nutrition needed from your diet, you will feel worse.
As for uni, do you have any help? You can get it. Most of our students do. Check it out with whoever is responsible for your pastoral care.
Severe chest pain should never be ignored. If necessary contact NHS Direct. You’re not taking anti-inflammatories without a stomach-protecting med, are you? That could be a cause. As for ankles, your GP can prescribe pain relief which might help the ankles. Worth a try?If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi Tanya , sounds like you need to be fast tracked onto some nice meds , had RA 17/18 years but the outlook is so much better & so many new drugs around they should be able to get your RA under control
as stickywicket said contact your GP , some of us take omeprazole for this reason , as for ankles dont be scared to make a fuse when you see the rheumy & try get steriod injection into them & maybe into the heel joints as well0 -
Hi Tanya
Family's can be like this,it is hard for then to understand when they aren't going through it, but you have us to talk to, and hopefully it will help you .
Take care xLove
Barbara0 -
Hello, you are not alone in being on the arthritis roller-coaster, this is exactly what it does. You have the rising days of feeling better then the sudden downward swoop of feeling not so good. The meds are partly responsible for this as is the disease but, as time passes, you will learn to recognise when the down times may be coming and what to do to ease them. Everyone has their own way of coping, it takes time to develop your personal strategies but you will.
Please try hard not to vent too much on Dave : to be blunt this is your problem not his, he is there supporting you and this is not his fault. It's not yours either but you are the one who is bearing the brunt of this - he knows that and probably feels helpless (I know my bloke does). Arthritis sends its stinking ripples out across the life pond of our friends and family and they struggle to cope in a different way to us. Come and moan to us, that's why we're here. Take care. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
They've all said it before me but I do wonder if your mum is like she is because its easier than facing the reality, I know my Mum can do that. It hurts but it's not that she thinks you are rubbish, just that she can't accept what is going on. Arthritis is sneaky like that, there's no big sign saying to the world 'mind out disease on board' so it's easiest to believe there isn't. It does get easier to face over time though and you will find yourself getting through it all easier, small comfort I know but when I look back at how I was at the start and how I face things going wrong now, I can see it's very different. I guess the big thing and it can't come straight away is acceptance, once you accept it you lose lots of the emotions that go with it so it is less tiring and overwhelming (it still pisses you off like nothing else at times) and it makes it easier for everybody else to get too.
Treat yourself well, plan something good, not long after my diagnosis before I was settled on meds that worked, I had the mother of all flare ups. Lying in agony one day I decided I would get a tattoo if I got through the flare with anything like my dignity in tact. I did and duly got inked. I have been inked since for reason and whimsy alike but that little flower kept me going, it was a promise to myself and it meant so much. Good luck sweetie and DD is right, let it out on here, not on Dave xxHey little fighter, things will get brighter0 -
Hi There,
I have RA, first symptoms march 2010, diagnosed nov 2010. my symptoms started with severe chest pain (GP said it was muscular) but was refered to Rheumy (couldnt sneeze for a few months because of the pain ) mine also then went to hands and feet, feet looked bruised at one point. i am now on methatrexate, hydroxychloroquine and folic acid. these are working well for me.
yes, life does not go back to how it was before RA but....you can learn to live 'a normal' life. the spoons story is spot on...you can do most things but you may 'pay for it' the next day.
i work full-time, dance a partys and enjoy holidays
could you take your mom to your next appointment? its a learning curve for your family too
before my metha kicked in and took most of the pain away i had steroid injections.....they worked for me. is it worth asking for more pain relief?
jo
sending gentle hugs xxx0 -
Hi tanyakent
Uni: get a recoding device for your seminars. Most universities supply these for people with writing difficulties. If they don't, they're not mega expensive to buy. Tell your lecturers, they may have some pre typed notes they can give you at the end of the lecture so you don't have to write a lot.
Pain: we've all been there and it sucks some days. Make sure you relax and take mess. I Find keeping my joints warm can help.
My rheumatologist nurse has an answer phone machine I can call if I need anything. I call her before 1 and she often gets back in touch with me the same day. If you're experiencing a bad time of it and have this facility then call them. If not then yes, call your GP
Mum: just like you go through denial, so do your parents. I accepted my condition long before my Mum did. Its nit that she doesn't believe you its that she doesn't want to. A common argument we used to have was I would tell her she didn't understand and she would tell me she wishes she could have it instead of me, which would frustrate me more. In hindsight I could see she was hurting too, not physically but they feel like they have failed in protecting you and they can't solve this one for you. Show your Mum this website, take her to meet your doctor, talk to her rather than sounding off on her. I'm saying all this from 11years of experience all through the traumatic 'teenage years' ha ha!
Food gives you energy and if you're taking something like ibuprofen you should be eating before taking them.
I hope you start to feel better about yourself soon. Life is hard with this. I've been through so much already and know I still have a lot more to come.
Hope you're ok x0
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