My goodness me Paula, I so understand how you feel it becomes really hard to keep positive when you constantly feel ill and suffering pain.

My morning just the same, pain in shoulders down to hands ( usually from a disturbed night of some level of pain which varies at the moment ) the shower etc, getting hair done etc etc the the list is endless as you say. At the moment I have been told I am not under control and it certainly doesn t feel that way either, my ESR and CRP fluctuate all over the place and have just come off leflunomide and trying methotrexate at my request ( have been on infliximab since early November ).

I know others will provide you good advice, just wondering if you could be referred to another consultant following a good chat with your GP about your poor quality of life , the stress of it all does not help either.

Thinking of you Julia x

Hi Paula

Are you me? I say the same things. My hubby must be sick of hearing me say "this is b......y ridiculous"

Poor you. I know exactly how you feel. I would love to be able to say something to give you inspiration and something to look forward to, especially after your consoling words to me today but alas.....It is a pity we can't send hugs down the airways but we can try. One coming your way.

Love Sheila x

I am completely understand what you are saying. I think one of the hardest things is being told it is under control and you haven't got any joint damage BUT your body isn't telling you this. I always feel like a fraud when i go to see my consultant, he's telling me one thing but I'm not feeling that and never feel I can express how I feel properly. I come away feeling like I should be grateful its not worse.....but I'm not. However what does help me is that there other sufferers out there who are feeling the same.......and its not that I would wish this on my worst enemy..... but that I'm not a hypochondriac! Take lots of care.

hi Paula,

totally understand how you are feeling .. do we ever come to terms with it. and you explain it well with the statue being chipped away at.

just a tip on drying after shower .. i was given the advice after my Hysterctomy to towel dry then finish off with the hair dryer on medium heat it gets all the nooks and crannies and places like your back completely dry.

i first was given a Blue Badge 3 years ago because of Osteo in my knee's and i was worried about re-applying in March as i had read of other people having problems getting it. it was done in 10 minutes on the phone and i sent of relevant picture etc. i know i need it as i would be housebound without it unless i go out with Hubby. so don't feel a failure in going for it, if it makes life easier.

i also wear my Fly Flots all the time, i have wide feet and because of difficulty walking i find restricted shoes makes me worse ... they have good cushioning and i definately feel they help me. Consultant understand this when i told her about them.

as others have said i can oly sympathise and understand,

take care

Suzanne x

Hi Paula,

Read this the other day but there was football on and I'm not allowed access to the PC at these crucial times!

Oh yes, under control, this phrase is totally inadequate for how I feel most days. I get the same from my rheumy team, there are people a lot worse, you're not that bad etc so how is that actually meant to make me feel better? Only tip I can impart which seems to work for me is to try to see the funny side of the spilt milk, dropped cup or banging my head on the wall when stumbling. My mantra is always pick up your pint with 2 hands woman and I've always wanted a new set of crockery anyway and that knocked some sense into to me then! These things are not necessarily true but they make me feel better and I've stopped spilling my beer so often!

Some days we all get a sense of humour failure and I'm right there with you on yours. My first question to my rheumy nurse is 'Is this really as good as its going to get? Really, you sure about that?' Not sure I can accept it either but if we do is that the point we stop fighting? Not sure about that one either, being a bit vague today, blame the drugs!

Take care
Sara
x

Thank you all for your replies.

It's good to know that I am not on my own with how I am feeling.

I have been doing some thinking about the undercontrol bit since I posted and have come up with the following:

We all know that there is no cure for RA and the consultants try their best to help us, but there is no magic pill that will make it go away completely. When I first saw my spaciest nurse (6 weeks after being diagnosed), she told me that their aim was to give me enough drugs for me to function on a day to day basis. So I suppose we cannot expect miracles. We often hear on the news when there is a fire somewhere that the firemen have got the fire undercontrol. That doesn't mean that the fire is out, it's still there but they have it undercontrol i.e. it's not burning away fiercely, so I suppose thats what they mean with us. The consultant told me that I have no bone erosion and that was good, so that must be the ultimate goal for them so we don't need to have to have surgery.

I still do get down with it all though. Some days I just think 'Oh get on with it', then I have days when it's the 'Why me'. I know I could be much worse than I am (reading what others have wrote) and I am grateful for that but I do worry how I will be in years to come. I did say this the first time I saw the OT at the hospital and he said if it was him he wouldn't want to know, but I do. Trouble is there is no definite path with RA that we go down, so we just don't know and have to hope for the best. He told me that thousands of people who have got RA, apart from the odd flare now and again, manage to live a normal life. Well at the moment my life is not what I would call normal. To the outside world I may look OK but I know I am far from it.

The problem with me is I don't really know how I should be. I've asked why I am still in pain and can't do without pain killers and have just been told 'You've got RA and it's painful'. I asked the consultant last time if it's undercontrol then why do my joints hurt and he's told me that my body is changing because of the RA. So I'm none the wiser. When I was first diagnosed and the meds started working I was pretty good, but I am nowhere like that anymore. Should I expect every morning to be really stiff and painful? Hobble about because it hurts to walk? It does wear off as the day progresses, but some days it doesn't. It's them days when I could do with a blue badge if I need to go out. I don't seem to have any energy and most things are an effort to do. But feeling like that now seems normal. Have I just been very lucky up to now with it all and I am now experiencing what RA is really like?

I have told my husband Anne that when we change our car I want an automatic, no gear changing and having to put the break on and keep my foot on the clutch when at traffic lights. Sometimes if my fingers are worse than normal it's painful gripping the steering wheel. I have found that the car keys are good for pressing down on the catch to release the seat belt, rather that pressing with my fingers.

Anyway essay finished, but I do find it therapeutic to put it all down on here.

Thanks once again.

Paula x

Dear Paula, you have put so well in to words how it is and I wish we had answers too. x

Thanks again for your replies.

I won't be around much for the next week or so I won't beable to add anymore to this thread at the moment.

I'm off to Warwick later this afternoon for the meet up tomorrow and then we are going either to Wales or Norfolk. Was told not to go on internet this morning because we've got lots to do. (I never do as I am told). But I've been looking at the weather forecast for various places and I can't just jump to it in the morning anyway so here I am drinking my coffee waiting for my body to wake up.

Speak to you all soon.

Paula xx

Dear Paula,
like a lot of others have already put. you wrote what I often think. It is so so hard to come to terms with. Some days I can almost convince myself that I don't have this RA. Then wham it bites back and laughs at me so hard. I sometimes do sit and worry what the future holds but then I tell myself "live for now, I'm here try to do at least one thing today. Thank you for putting into words how I feel. We are not going mad it is an illness after all!
sue v xx