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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 89 Location: Braintree, Essex
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Hi everyone, thought I was coping but know im not!!
Iv been trying to carry on but finding that im begining to feel different/left out, Its been just over a year since having R.A and it was really bad to begin with but slowly the meds kicked in and I began to feel better! so ok I can do this, have mum to talk to have you guys too but as I started to get on with working again and trying to be "normal" I find that im struggling as the difference between ME before R.A and after are so much more noticable,and as everyone around me became use to My R.A im not sure that I have!!
Iv been cutting back alot but begining to feel that less and less Im involved in what everyone else is doing, and they have been kind to tell me that "It might be too much for me"
Which I except but struggling to come to terms with. so as everyone else goes about their lives, Im left to do what I can manage and no more.
The R.A has been worse of late so maybe this is why Im feeling it? not sure if my meds are not doing what they should or if some other underline virus etc, did have antibiotics couple of weeks ago for a cough!! trying to see/speak to doc or should I ring rhuemy nurse? any advice welcome.
Thanks for listening/reading
Corinne xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Corrine, If everyone else is looking out for you thats good, It's you letting your mind run away with you, be included get in there are make sure you are included. You can do things but with a little more care. You are probably feeling low at the moment because you are having difficulty accepting things, I have been there too. Your mind runs away with you then the paranoia sets in, its a vicious circle. Don't let it, you are still the same person try to be happy and let people look out for you. Thinking about you and sending a hug to make you feel better. Lorna xx 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Corrine,
Ah bless you certainly are down. I can understand what you are feeling but I am sure it is
you who are a little sensitive . When you are not feeling well and in pain it certainly brings
your spirits down.
Chin up. I would give your Rhummy nurse a ring and have a chat.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Corrine,
Having had RA for seven years now, my personal experiences are of feelings akin to grief. There are the many different stages you go through from anger and denial to, eventually, acceptance. I think the varied nature of the disease makes it much, much harder to come to terms with as, just as you accept your condition as it is, something changes (usually for the worse) and you start all over again.
I don't know what to say to make it easier only that, with time, you will move towards a position of acceptance and that it is a process you need to go through.
The one thing I can say is this: you are different from your friends around you. Not different in a bad way. But your life is not as it used to be and your priorities especially towards yourself are different. That's OK. Those around you worth their salt will adjust, those that are not will move away.
I hope you get that RA under control again and get back to doing some of the things you enjoy!
x x x
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Corinne,
I think you have pin pointed one of the hardest aspects of having RA- accepting it!
Although I am in a very different situation having grown up with RA so not really knowing any difference, I still find it hard to actually accept.
As one passes through different stages of RA i can relate to this- ie I have had it return very severely in my 30s than when i was in my 20s so I do know that shock and fear and the dread one feels of 'what's going to happen to me?'. The meds are frightening as is the illness.
A part of RA can be depression and feeling low, it is only natural such a disease would make some people feel very sad and for this there is help. I have had CBT many times, not just for RA but for other traumas, and it is a very helpful therapy.
Relaxing and resting and allowing people to help is also important, no we're not the same as others, we're special!!
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Corrine Could just be me you're talking about. I've had a very rough couple of weeks ,despite starting MTX I seem to be getting worse, although I lost my dad a couple of months ago and my rheumy nurse did warn me that it could affect the RA- it seems to be a delayed reaction as the grief is really kicking in at the moment. I'm feeling like I was when I was first diagnosed, but things got easier, so hopefully it will settle down again. As everyone else says- it's the acceptance. I am not particuarly patient and don't cope well with change- not good with RA! I was ok for the first 18 months and seemed to take it all in my stride but I'm strugling at the moment.I have a lot of support and love but I get very frustrated with myself and the fact that I can't do everything like I used to. I was always up in London, meeting friends, at the theatre, concerts, shopping, galleries and museums, at least once a week, but nowadays it's a real treat once a month if I'm lucky. And I hate not being able to do it so much!!! On the positive side, I guess it's saving me money  .And I'm gradually starting to use and appreciate local life and amenities more which is how it should be. Funnily enough, work hasn't been a problem for me. I have accepted that there are aspects of the job I can't do any more and it doesn't bother me to have to let someone else do it even though it meant giving up things I enjoyed like putting on the school plays. Maybe I was doing too much before RA??? It certainly seems to have improved my 'life- work balance'! And I've embraced the opportunity to go part time wef Sept. I will be able do things mid week which I have always missed out on- can't wait for the Chelsea flower show next year! I also feel that guilt plays a part- I hate sitting there doing nothing while my hubby has to do everything. It is hard though, to be positive when you're feeling rotten and insecure. Take care- and look after yourself. Love Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 31
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HI Corrine i feel the same i have a young family two young children and my Husband often takes them out all day Sundays saying you wont be able to maage will you!!!!!I have a wheelchair but my arms are so weak and sore i cant propel myself along unlessit is very flat and with a 3 year old as well its not easy so i stay at home and miss out on family sundays.I did sugest buying a mobility scooter as i also have fibromyalgia but he said you are 44 not 94 annd laughed i feel i need one for my own independence ut he just laughs.So i know how you feel i have had RA for 3 years and only just been diagnosed with fibo after 7 weeks in hospital.Good luck to you there are things we can do washing up and doig a little bit of gardening just set yourself one very small task each day annd tick it off the the list this makes me feel as though i have achieved something all my loce Cazza x x x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi ya
just to say that I do understand. I was just 20 when mine started. I was at university then, doing teaching and music and it came on.
My gran has rheumatoid- she got it when she was 15. I think I was so relieved to get a diagnosis because I thought I was going nuts being told it was a virus for ages....
anyway, about 6 months in Gran asked how I was coping now I had been dx and I said "Oh that, I have come to terms with it!"
Grandma smiled.
she said "You will "come to terms" many, many more times that this Jenni" and she was dead right.
every time something else goes wrong, you loose something to the RA monster it is a loss and a grieving process.
I dont think you ever come to terms with the enormity of it all really. Yes, you do get your head round thinking differently planning for disability and fatigue etc and sometimes deliberately ,in my case, push yourself over and over that limit again and again and then mourn that you cant be the same as other 30 something mums.
I do think a lot of subconscious comes out in dreams. I know my ra has reached my subconscious now because I dream about having it.
Sometimes I am walking and then running along a path and then I suddenly remember I have RA and cant walk let alone run!
even at the age of 87 my Gran dreamed when my cousin had her baby she was holding him, soothing him walking up and down and patting him gently. She has not walked for 56 years.
Has she come to "terms" with having RA then? What does "terms" even mean? I don't know!
I think to respect the loss of the life past and the life yet to live the way you thought it was going to pan out and the pain that brings is important. If that is what is meant by "coming to terms" I have a good cry, feel miserable and sorry for myself and then I get on with things a little different from before.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Can I urge you to get a scooter? Maybe you could hire one for a week or two and see how it goes? Many of us (Jenni included) have scooters and they most certainly do give you back a degree of self-confidence and inependence.
Have a go - you've got nothing to loose and lots to gain.
Much love
Jeanxxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/10/2009 Posts: 89 Location: Braintree, Essex
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Wow. Thanks everyone, lots of things to think about.
Jenni, im not sure what coming to "Terms" means either but you have given some good insight.
I saw my G.P today who also said that the serotean in yr brain can get low when you have a condition like R.A and was not supprised as we have alot to cope with and sometimes you just need help to balance it all, she gave me a questionaire to fill out and to speak to rhuemy nurse first to see if maybe need to change/increase drugs.
After reading some post about sulfersalzine im thinking maybe this can be some cause for me feeling low and starting to feel stiff and sore again, wounder if this needs to be changed? Well waiting for call back will let you know.
Maybe if I had a good cry too as Im terrible for holding it all in as dont want to seem like im not coping/or upsetting family, things need to change I thinks!
much love corinne xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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that SLZ can make you feel blue, I didnt realise until I came off it and it was if a cloud had been lifted off.
If it is working for the RA, there may be things that can help with it without stopping the meds.
love Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Corinne
It could be that you are coming to terms with having RA, maybe you've been in denial for a while. It's bound to make you feel down, and realise that you can't do all you would like.
I can definitely relate to feeling different from my friends. They often ask if I would like to go out with them, off to London to see an exhibition or a trip on a bus. I have to decline, I say I would only hold them back, and on top of that there's the tiredness which makes it impossible to do very much in one day. I would feel embarassed if they had to wait for me, or I had to keep stopping for a break.
But on the plus side, there are plenty of other things I can do. It's a case of finding what you can and like to do, for example I knit and sew, do gardening in pots (on a bench) go swimming, sing in a choir and sit on various groups. So it's not the end of life, just having to adjust.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 6/16/2010 Posts: 39 Location: Edinburgh
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Hi Corinne, can I suggest you have some chocolate next time you feel down? Then cuddle up with a cuppa and a funny film. Always cheers me up.
Keep your chin up girl!
Laura
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Rank: Advanced Member Groups: Registered
Joined: 12/10/2009 Posts: 89 Location: Braintree, Essex
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Hi everyone,just an update!
I saw my rhemy nurse on monday, who said I have a das score of 7.1 so now I have to wait another 4weeks so they can repeat the score and discuss
Anti TNF , she says I have a choose of 3 ! she also promised me a steriod injection then!! also need more xray on hands, so lots to think about! we all knew this would be the case, but I had to try the dmrads first... shame could have been well on way to medical remission by now! but hay ,ho
It has helped me in the fact that I dont feel like its just me feeling sorry for myself! so although in pain, Im feeling positive about the out come just need to digest all the info at the appointment and deal with the pain untill then!!
Any advice welcome or just how you have got on with anti tnf???
love corinne xx
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