Well I'm so cross, I've been feeling a bit better this week but tried to do a little more today and now feel awful. My knees are really painful and burning hot and I feel so tired or ill or something, but just plain dreadful. I haven't even done that much.
I've taken a few weeks off work at the minute as I had been feeling so bad. I've been resting and I had really thought that with the rest and the steroid injection slowly kicking in I was starting to feel better. I heard a couple of days ago that they are doing a 'lean' study into the role I do, which usually means redundancies, not now but possible in a year, or a lowering of grade and responsibility etc. so I was really hoping that I'd get back to work sooner than I'd first thought. Now I'm not too sure after today, I feel worse than ever.
Hopefully I will get a call on Monday about when I can go for the first visit for my drugs trial ... Yes I decided to go for it ... But it'll be a few weeks before I start any meds and that's assuming I pass the screening. The 'lean' meeting is on 24th March and I know that a while away, but it's actually probably going to be slap bang when I start my drugs.
I've glanced through the posts on here tonight and I'm so tired I can't even read them all, even though I've friends that have posted that I want to offer support to and know what's happening with them.
So, sorry for not quite being there for anyone, feeling fed up and frustrated and just plain pooey, sorry that's a technical term and I think I've spelt it wrong!!
Rosie x
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What a shame, it's so easy to overdo it when you think you're on the mend. I'm sure we've all done it. So it's feet up, and no beating yourself up about what you haven't done!!! I won't say don't worry about work, because it's natural, but try not to get too stressed, because of course that makes the RA worse. You really can't win!!!
So pleased you're going on the drugs trial, I'm sure you will get a lot out of it.
Thanks M, I am trying not to stress about work as there's nothing I can do right now. I am finding it harder to nothing though, thanks for your support Rx
Hi Rosie - I believe pooey is a recognised medical term . Please don't beat yourself up for overdoing it as it'll just make you feel rotten for longer. I bet you'd be hard pressed to find one person here who hasn't done exactly the same as you. In my case, several times as it seems I am incapable of learning from my mistakes. Try to see it as a positive - you were well enough to do so much you wore yourself out. Hopefully this morning you're feeling a bit better but take it easy and pamper yourself if you have the chance. It's all about pacing but I know how difficult it is to stick to that when you have a good day after many bad ones. You just want to get on and do everything you haven't been able to do for a while.
Best of luck with the trial. It sounds both exciting and scary at the same time but that's no different to starting any new RA med really is it? At the very least you can feel that you're doing everything you possibly can do beat the vile disease into submission. Finally, please try not to worry about the work review. Easier said than done I know but stress really will make you feel iller (another recognised medical term) for longer. The fact that you have a long-term condition that limits your ability to work etc affords you some protection under DDA so it might actually make you less likely to be "rationalised" out of a job. x
Thanks Misty, yes like you I never learn from my mistakes, but then I do find it creeps up on me. Some days I could manage what I did yesterday without a problem ... yesterday was obviously not one of them! It's when that happens you realise how much of an effect this disease is having on you and how you just can't escape it, or kid it, or yourself!!
Sadly, I think I pushed myself over the edge yesterday and today I'm still feeling pretty dreadful. Lots of pain and the worst ever fatigue that just makes you feel so ill. Also, having 3 little monsters that need running around etc, shopping that needs doing, pampering is not looking like it'll be on the cards today :(( I'm hanging on to the fact that everyone's back at school on Monday and I'm gonna rest, rest and rest. I've just got to hope I can keep going til then.
Yes I am pleased that RA is covered by the DDA, I haven't had a day off sick for over 2 years so my sickness records should be clear except this period I'm having now which is RA related.
Yes I'm excited, worried, scared about the trial. Worried I won't pass the screening, excited that I'm involved in something that could benefit so many and may give my RA a good kicking, and scared cos, well it's a bit scary isn't it, new drug and everything!!
Thank you for your post Misty, it has really help and made me think about things a bit more. Also, I think it must of been a bad Friday as looking at yesterday's posts I think there were quite a few having a bad day too, but some a lot worse than me and have more to contend with than me. So, onwards and upwards and try and move on from feeling so pooey! Rx
Ditto to everything Hatshetsput and Misty have said Rosie- please take care.
I've been a member of this site for about 3 years and I have to say I've learned so much about RA from everyone, and it's good to be in touch with likeminded people who understand.
Like you, I regularly overdo things and feel totally "pooey", yesterday worse than ever. So your message stood out in my gmail messages.
Misty and Hatshetput have given you really good advice, now all you have to do is be good and act on it. Not so easy I know, but it helps a lot to be aware that you are overdoing things and listen to what your body and mind are telling you. It takes practice, but it gets easier with time.
These days I don't feel guilty about having a rest and regularly take myself off to bed for a couple of hours or go to bed earlier in the evening. I am a carer for my husband who is chronically disabled. That's my biggest problem.
Your biggest problem is work related alongside getting your meds sorted out and I really feel for you because of the situation you find yourself in.
Misty's last piece of advice to you makes good sense to me, because being under the kind of stress you are experiencing will make it more difficult to get your condition under better control. So I hope you can give it some thought. Take care of yourself. June xx
Thank you June, that must be hard for you looking after your husband. You must be a determined and strong lady, but then I think we would all try to do our utmost to look after our loved ones.
Yes I've had great support on here, as always, I can't believe how fantastic everyone is on here. But you're right I'm rubbish at slowing down and listening to my body. On top of the work issues, sorting out my meds is charging around after my 3 children who do sometimes run me ragged, and that was before I got RA !!
Anyway I hope you're feeling better today and are recovering from your overdoing it yesterday. I'm still feeling not good and trying to hang in there til Monday when everyone's back at school!
Oh bless you, your life is just as busy as mine (if not more busy) I remember being run ragged when my three were young. At least my RA didn't start until I got into my 60s, my heart goes out to you younger people. I hope you can manage a bit of a rest over the weekend. June xx
Hi there I know where you are coming from, I get up with all good intentions for they day start to over do it and end up in pain for the next few days, get better then do it all again. I don't think in the last five years that I have ever accepted that I have RA, but when I have a flare up I know I have thou unfortunately my knees are never pain free. Anyway I wanted to wish you luck for your trial I did read your dilemma regarding it. Good luck and keep us posted with your progress. xxxx
Thanks for that Bazzy and I will indeed keep you all up to date with how things go with the drugs trial.
It's funny you say that about not accepting that you have RA. I often feel like that and think, oh no they've got it all wrong and it'll just sort itself out. I battle between that and omg isn't this awful!!
Anyway, got to stay positive, I'm still chuckling at the image of your bath buddy lol so thanks for that. Take care and thanks for replying Rx
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. Please don't beat yourself up for overdoing it as it'll just make you feel rotten for longer. I bet you'd be hard pressed to find one person here who hasn't done exactly the same as you. In my case, several times as it seems I am incapable of learning from my mistakes. Try to see it as a positive - you were well enough to do so much you wore yourself out. Hopefully this morning you're feeling a bit better but take it easy and pamper yourself if you have the chance. It's all about pacing but I know how difficult it is to stick to that when you have a good day after many bad ones. You just want to get on and do everything you haven't been able to do for a while.
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