Those four little words say it all, how RA can be so up and down can be quite hard to deal with at times.
I remember in the early years of being diagnosed I would have a good day and think oh I'm getting better, and I really thought I was. Cleaning the house top to bottom thinking I'm going to make the most of this day. The next day, boy did I suffer more than I could ever imagine, but did I learn unfortunately no I didn't.
It took me quite a few years to accept not being able to live the life I once had, I had it in my head I had to fight the disease but the more I fought the harder the RA fought back.
The trouble is it's not an easy thing to accept not for anybody, young or old.
It's a complete life changing illness, we know it affects everybody in a slightly different way and some more than others but at the end of the day it all amounts to the same, accepting what is happening to us.
We will have good days bad days, but speaking from my experience with RA its all about learning to accept the condition and the sooner we can do this the better. Having said that its not easy, even learning to pace ourselves is difficult but it can be done, and pacing ourselves is very important. I've got to know my body and to listen to what its trying to tell me (sorry to sound so deep) and I think that's important not just for me but for the rest of my family too, after all they too are living with RA through me!!
mand xx
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such wise words.. i keep on pushing myself.. then suffer,, maybe i need just to step back... had a mixed day today... negative. on the acess to work and DLA front and from getting warpped knuckles. I mean wrapped!!. they hUrt enugh already!!positive i kept myself very busy...
Hi Alison, warped!! that's about right for mine lol. Must be so hard what with work too, it's difficult at the best of times. Good to keep busy but but not too busy!!
Hope your feeling better today.
Take care
mand xx
mine are mishappen and a little kinked in places, having operation tomorrow. signed off til april 10th think i meant rapped he he x
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Hi Alison, good luck with the op tomorrow.
mand xx
Err this sounds like me... i suppose it is something you have do yourself you can't just read about it and do it. It is so tempting to overdo it when you feel well. Not least is the look on people's faces when you say I am too tired to do this, that or the other. You can see them thinking... yeah right you're just being lazy. It's the same old story.
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Hi Julie, yes it is something you have to do yourself and in time you will,never worry about what other people think you have enough to worry about already.Your family will get to know your RA as much as you, it just takes time I'm afraid. Hope your feeling better.
mand xx
Do you know what? I would miss RA if I didn't have it now! Yes, it sounds silly but I mean it. Had it almost half my life, it's me, it's how I live. And ... I have made some fantastic lifelong friends on the NRAS forum (and hopefully here too!).
Where would I be without it, less stressed at times perhaps, but much poorer for my understanding of life and it's daily battles for those living with chronic conditions. Acceptance is hard, it takes time, but it does come. Having reached that point you don't look back (too often), you look to the future, to living life differently but that's up to you and what you make of it
I got asked yesterday what I saw for my future and I really struggled to answer....after much deliberation I said "that I don't get any worse than I am now (I am being positive), that I'd like to get married and 'walk' down the aisle and that I'd like to go on holiday with my family somewhere sunny". None of those seem too unlikely do they?! x
Wise words indeed they are... Lyn and Mand indeed they are, your advice and support will be with me always, because no matter what the pills potions and diagnosis, you two have lived it. Thanks xx Julie
I wonder though if it is a process that we have to go through to find out just what our limitations are and how much our bodies will tolerate before having to give in to it? If we just said "yes, ok I've got RA so I'll quit doing the hoovering and ironing because it might tire me out and make me sore" we might just not do anything! I really feel that for us to hear what our bodies are telling us we need to find out through experience, through doing and then thinking twice about doing it again. In the early days there is always that hope of 'getting better' but I've learnt that the only thing you 'get better' at is asking for help! x
Hi Jo, I just found that once I came to terms with the fact that I had RA I knew my life would change completely whether I liked it or not.
You do learn a lot as times goes on, when to do something and when not to. Like Lyn I don't do the ironing as both of my wrists have been operated on so my sister does that for me or hubby if she can't. Your partner will also learn what to do without you having to ask, as in picking up heavy things or reaching for something.If you don't feel up to doing it then don't it will still be there tomorrow. Ask for help if you need it I did, not so much know as I have learned more coping strategies. I found the more I felt I had to do things the more pain I had then the more short tempered I got with the ones closest to me, and that's not what I wanted. You will get there Jo.
Take care Jo
mand xx
I find the best forward is to carry on just as before. I don't ask for help (well, rarely, but that's because I'm so bloody minded at times and won't give in!), if I can't do it, it waits 'til I can. I keep a list, to which I add new jobs, large and small and at the start of the day I examine said list and decide what's within my capabilities for that day then once done cross them off.
One thing I don't do is ironing, wrists don't allow for such. However I hang up shirts whilst wet and they dry pretty well without creases. Husband irons his own stuff, kids don't care and my things are mainly non-iron, deliberately. Most other things I am able to do, often taking four times longer than the average person but heyho ... did anyone say stuff had to be done super quickly? I think not
You will improve Jo, things will get better but in the meantime start the list and start to cross things off. I'm pleased with myself today only a couple of things on the list at the moment; I have caught up! Whoop dee doo
Hi Mand. I am new to this site. You have described me and I am sure many more of us. When I am well I can talk quite philosophically about the illness and think I have accepted it and that I will just have to get on with it until..........the little devil gets me again then I think I will never be able to accept it. You just wonder what is next don't you. I think it is because it has a million faces. I have had RA for nine years now and still different things are happening each week. There can't be many places left to attack. Oh! that was good. I feel much better for that. A good moan always helps I find. Thanks for listening.
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Well one good day followed by two bad days....
Good day
My wife is officially in remission
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