Running on empty-not

24

Comments

  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    hi DD, glad you are feeling a bit better! Like you, I can't manage without the pred either. Keep kidding myself but need to up it tomorrow. It's pelting down with rain here. Do you think that makes things worse?
    xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Not usually, pelting here too! Cold and damp has never affected my arthritis, low pressure weather used to affect my moods tho - moulds are released into the air and they cause all sorts of problems. As my immune system, however, is now dialled down to virtually nothing thanks to the meds, that hasn't been such a factor. I think this episode is due to tiredness ( I cannot remember the last, unbroken night's sleep, tho I suspect it is as long ago as 2005, last op hence GA - unconciousness counts as sleep for me!), various stresses, pred/meth/humira sweats replacing the menopausal ones and a lovely week-end in Cambridge. I was just tired, I still am, but the pred has disguised it beautifully! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi DD,
    What a rotten time you are having again. I do hope you can find the right balance for the preds.
    Try and get your feet up and remember the wonderful weekend you had away. Snuggle up on the settee and get” himself” to order a takeaway. TLC and rest is all you can do at the moment.
    Daisy will be wanting her run out soon, so beep, beep and a double toot from Jesicar. Who is behaving herself beautifully. :lol:

    Lv, Ix
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Took Daisy to the hospital today for her meth jab, but it was a struggle driving. As usual, she brought solace and comfort, and now the pred has kicked in I may well be going for one of my late-night/early morning jaunts, music blasting and windows down for fresh air and relief from pred sweats! There is nothing that beats driving in the dead of night, in one's nightie. Living in the country has its advantages sometimes - I can be noisy and bother no-one. I am glad Jessicar is behaving, little cars are good fun, aren't they? I hope all is well with you? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Not to bad thanks. Looks as if I will be joining the MTX club very soon. :roll:
    Yes Jessicar has managed to avoid the many idiots on the way to work and has out run a few bullies :wink: Radio on and night driving will be here very soon!!

    Glad your feeling a little better tonight. You look after yourself.

    Lv, Ix
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    Hey DD I have been know to drive our car down to the train station first thing in the morning with my PJ's still on, so that hubby does not get wet walking to get his train. Once home I can hop into bed without a worry :wink:

    I used to believe( liked to kid myself) that no-one noticed, but well, who knows .... maybe i'm not the only mad townie driving around in PJs :lol::lol::lol::lol::lol::lol:

    WOnky
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Morning dd

    Just been for mi fix of coffee but oh blast forgotton to take mi meds, will now have to go and get em. The word coffee just reminded me.

    Hope you are feeling much better today.
    And that the meds are working for you.

    Hope you and wonky have good heaters in the car for PJ driving.

    Have a good day. Rest and take care
    JuliePF x
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Morning DD
    How are you feeling today....a bit better I hope

    Love
    Hileena
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Thank you julie and hileena, I would like to say yes, but that would be a fib! I'm very tired, feeling sick and fed up to the back teeth with it all. I am now beginning to wonder if a flare is looming. Deep joy. Cutting edge meds and I still flare. What is the point? I mean really, what is the point? I could save the Health Service shed loads of money and just live on steroids. Ooooh, that doesn't sound like me! And with a newly-refreshed cope as well! I've done the first load of pills, so in another hour or so I will do the pred and that will help, I'm sure. Oh it is such a ****, isn't it? I give up. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi DD,

    Hope your still feeling ok with the preds increase? Hey is the cope holding up ok still? I didn't lecture it in fact I was very nice to it..... I did show it mine as a warning though... Mine won its self a one way tie up with a long anchor chain cus it ran off once and now it can't.......Its got a kennel though and some warm duvets.....

    Daisy did fluff mine up but I will never trust it off its chain...

    Yours was horrified at such treatment so maybe that why its decided to behave better :lol::lol::lol: Anyway remind it I d have an extra length of chain...... :wink: ((( ))) xx
  • frogmorton
    frogmorton Member Posts: 29,336
    edited 30. Nov -1, 00:00
    Good Morning DD

    I am sorry to hear you are still so shift :(

    keep going with that paddle - it IS uphill but we are right behind you. Really.

    Sorry about the singed bits Daiscat finds holding the dryer for long a bit hard :?

    Cris' cope escapes - at least yours is loyal even if it does get a bit dishevelled from time to time :wink:

    You do what you gotta do girl, but take it steady

    the sun is shining here so i am sendig some your way too s025.gif

    warm you up :)

    Love

    Toni xx
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Sorry to hear you are still feeling rough. One day at a time and all that stuff. I don' really understand what you mean when you talk about a flare. I understand the principal but if you've had to up the pred, are you not in one already? Sorry to be a bit thick but I'm someone with constant problems so hard to distinguish a flare from anything else. Is that the case with everyone I wonder?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi salamander, I know what you mean. It can be hard to distinguish a flare from all the other rubbish! I interpret by what is hurting. Constant pain: sacro iliacs, knees, ankles. They never stop. Intermittant: toes. Flare-related: shoulders and neck. Real flare: shoulders, neck and fingers. Today my toes have joined in, they are wonderfully fat and my shoulders are aching, so I am thinking flare-related. Hopefully yesterday's dose of 20mg pred may have taken the edge off, I will have to wait and see. It is such a juggle, God it must be nice to have something straightforward, you take some pills and get better! On the other hand, where is the challenge in that? :D I hope you are feeling a bit brighter, you have been having a rough time too, haven't you? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    hi DD, I get it now. Sounds like you are having a rotten time and hope the pred is doing its stuff. I'm debating on whether to go up a bit as my knee and ankle were agony last night as walked too much yesterday. Got consultant on 13th to see what else he has in store for me. Am a lot better this week generally though.
    Hope you feel the same too. It's boring isn't it? :)
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    How awful for you DD. Totally drained and getting nowhere. I can only hope upping the meds will be a one off. I was told that some people can have Humira once a week, with the consultants permission of course, if they are struggling. I am sure that is what my nurse said.

    All the best,
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Yes, I know that, but as far as I am concerned that will just hasten its failing. I am certain I am already producing anti-bodies to it, as is my wont with these blasted ant-TNFs, as the thin end of the humira wedge is lasting longer and longer! It used to be two days, now it's four. Going to Cambridge finished me off even earlier tho - my fault for having a good time and living a bit! What was I thinking? Anyhoo, I hope you are feeling better now tkachev, and that your daughter is OK. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Hope you are smiling a wee bit today, DD?
    x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Truth? :( Sorry, but that's how it is. How are you doing, carola? Laptop fixed yet? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi DD
    Sorry you are still feeling so rough.....all I can do is send you gentle
    (((((((( ))))))))))

    Love
    Hileena
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi DD

    I'm sorry you're still feeling so empty... despite your cope being given star treatment. :wink::(

    you know the Humira may not be working anymore... that's what happened to me... body produced antibodies that stopped it working. :roll:
    maybe DD you need to be speaking with rheummy? you're on a vast array of meds none of which seem to be keeping the PA at bay and you afloat so maybe it's time for a review? there are other anti tnf's as you know... so maybe you need a change to one of the newer ones that work differently on the body.... target the b cells instead of the a cells (or the other way 'round :oops: ) worth a try?

    you're having these flares so frequently flower... it just ain't fair. :(

    love and (((hugs)))

    Iris xx
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Oh DD
    I am so sorry you are still feeling rough, like Iris says maybe its time to have a complete overall of your meds...I do hope you can get some relief very soon.
    Love
    Barbara xx
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Bless you both, but what can they do? This is my third anti TNF (which I am now thinking stands for totally neutral fluid) and it does seem to be going the way of the others. Drop 'em all (ooooooh missus!) and stick to pred is how I am feeling at the moment. I know they won't let me tho, 'cos my bloods are fine. They don't show inflammation ergo there is none. Not exactly true, both knees are enormous again, ankles very rounded, toes sweet and fat, oh I have had enough of it all! :D Never mind, eh? It is what it is, it will do what it will do, it will all come to an end at some point. I've felt worse, been worse, I think I just need some un-interrupted sleep. That would make one helluva difference. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    DD....... no-one should have to put up with this level of pain, swelling, and continuous broken sleep. :roll:

    If this was someone else on the forum posting the same symptoms... you'd be the first to say don't put up with it... go see the rheummy and tell them it needs sorting!. why then should it be any different for you? you should not decide for yourself that's all that can be done!

    You need to be seen and your meds reviewed. please do consider it.

    love and persuasive (((hugs)))

    Iris x
  • nearlybionic
    nearlybionic Member Posts: 1,899
    edited 30. Nov -1, 00:00
    Hi DD
    Sorry to see you are still suffering. Funny things those blood tests, they can blatantly lie!! There is obviously something going on with all that swelling etc.. I really do hope they come up with a winning formula for you.
    And I hope you get some sleep too, cos things are a bit easier to deal with when rested.
    ((((((((((HUGS)))))))))))))))))
    NB
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Sorry DD ...

    just re-read my post and I'm sounding very bossy. Sorry :oops: well meant but maybe (definitley) too clucky g070.gif

    well meant though :wink:

    take care,

    Iris xxxxx