Trying to remember to breathe

I helped out with some summer student interviews at my volunteer organization, and loved it. It was hard, though, to feel my energy drain, and then not be able to help today. I'm in a lot of pain (hands and knees especially) maybe because the weather has been so unstable. I hate this. I hate feeling like I am less than I used to be. I'm too sore to play piano, and even typing is pushing it. My only pain medication now is the last of the prednisone taper, and my gp is away until the 12th. I put a call in to rheumy, but the office is closed now and I haven't heard back. Between RD and my last stroke, I feel my life narrowing down. I've only just hit my full dose of sulfa last Friday, and though there's definite improvement in the swelling, my joints feel like they're on fire.

I can do this, right? I don't feel able. I feel reduced to a set of raw nerve-endings and equally raw emotions. Breathe. I can breathe.

9 Replies

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  • As long as you're breathing you're alive Bat. Low eb I think it's called, due to overdoing things. Much as you wish to do what you'd like your body to do it's yielding. Try to rest up, you've already let go of some of your more satisfying responsibilities in order to do the ones you have but now you need to pace yourself, you know that though I think.

    Keep on to your Rheumy office & hopefully you'll be seen soon. Do you not have any pain relief or anti inflammatory prescribed? If not ask your team what will help to enable you to ease things. You can't control the weather, we're having weird weather just now so I know what you mean, my scar is definitely predicting rain!

    Course you can do this, you've got through worse.... you just need a little bolstering & lots of rest inbetween volunteering. x

  • It is hard work just to breathe isn't it and i also feel whats the point if i am going to be like this for the rest of my life,but here we are and yes we are still breathing,sometimes i wonder why. There is a reason we are suffering maybe because we are such strong ladies and gents(i know there are some gents on here) thats why i believe.

    Hugs darling.xxxx

  • Poor you Bats. I sympathise, nay empathise. I can't even hold my iPad this morning . As for breathing, I can do that too, so That's another thing we gave in common! Yippee!

    I'm hoping I can get to the Hospital today, somehow, for a steroid jab. I swore I would never have them again, but the alternative is rotting in my bed.

    You have so much talent and humour and a brilliant support duo. Keep reminding yourself of these positives. It's not easy, I know, but I know that some good things come out of adversity , though not necessarily when you feel you need them or from the direction you anticipated. Take great care

    Jo

    xx

  • It is so difficult learning how to pace ourselves!

    Because our condition is so variable, some days we can do this amount and others almost nothing.

    And doing something (pushing ourselves a bit to do it?) so often results in feeling totally wiped out the following day.

  • Hi azabat,

    I have just received the go ahead for Tocilizumab. My Rheumy nurse called me yesterday to say she will write my prescription on Thursday and arrange for the infusions to start. I was told at my last appt that I will have to be on the infusions for 12 weeks before I can start to reduce the prednisilone. Did you have to do the same? I need to come off the steroids as soon as possible to get the swelling down in my feet and legs. My granddaughters are asking when I will come over to Canada.

    Good luck with getting the medications you need. I understand how the weather effects the RA as I had a bad flare up over the past weekend. Also, when I am feeling good I try to do as much as I can then suffer the next day.

    Take care, wishing you well.

    Sue x

  • How are things this morning Bat? I hope your body allowed you to rest last night & your knees & hands are at least a little less painful. x

  • Just popped in to commiserate. It's tough. I've lost the plot re. where you are with treatment, but I'd have thought you could realistically expect / hope to be a lot better RA-wise in time.

    You're very bright, lively ..... that's great. Except everything has its downside ..... sometimes thinking is not good, I doubt I need to tell you that. Then there's the upside - thinking your way around and past and through this. And you are doing that. Wishing you success in battle!

  • Thank you all, yesterday things got worse still, but I did hear from the rheumy and we're upping the prednisone again. I'm still ridiculously sore but should be feeling better soon. Sorry I can't reply individually, but I appreciate every word you've all written to me. Hands just hurt too much still. xx

  • Don't you be worrying about replying to each post, we know what it's like when your hands are sore. Take care & rest up, hopefully the steroids should do their work quickly & you'll be more like your old self soon. x

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