Running on empty-not

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  • frogmorton
    frogmorton Member Posts: 29,427
    edited 30. Nov -1, 00:00
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    Hi DD

    My poor poor lovely :(:(:(

    What next?

    Will you try to see the rheumy or rheumy nurse like iris suggests??


    I know you are right and it will pass because things always do, but you ARE suffering more than anyone should be :(

    Be careful or we will need to open up the M.A.S.H unit?

    I for one have been wanting to put my first aid training into action .......
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hey DD

    I reckon Toni's threat to use you as a guinea pig for her first aid training should be enough to scare the PA into submission for now! And as for the M.A.S.H tent, well, nuff said!

    Have you cut the singed bits off your newly fluffed cope yet? If not wonder if they are having a negative effect. Perhaps give that a go eh?

    Thinking of you loads.

    Love Tilly xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh the cope is beautifully trimmed, Daisycat did a good job, bless her, but paws and hairdryers are not a match made in heaven.

    Nah, it's not the cope's fault, it's its owner's! I need to get to grips with myself and wake my ideas up, that's all. I think I am just feeling too tired, too resentful and too ungrateful. The meds are doing their best, so I should settle for that. There is not much else to try, I think it went for far too long untreated, and that was my fault too. I believed the docs for far too long. Can't change it now, water long gone under that particular bridge. I will give myself a good talking to. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • psyart
    psyart Member Posts: 600
    edited 30. Nov -1, 00:00
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    HI DD

    Sorry not written in before now - and so sorry to read you are having a bad time again :cry:

    Sometimes we are allowed to feel sorry for ourself arent we :?: . From what I can remember - you have had a really tough time over the last few months - not sure if there have been worst times as only 'known' you for a short time :!:

    With that in mind and not having a full night sleep for - how long :?: - then its no wonder you feel resentful :!:

    I dont really know how to 'help' you - just send you loads of (((((hugs)))))) and hoping this is not a flare up - just a blip :?: :?:

    please take care of yourself

    Louise xxxx
    e050.gifo050.gif
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
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    Hi DD,

    sorry you have had to increase the pred. Though it is good that it has got you mobile again. Are you on the top dose of humira?

    Did you enjoy your drive in the early hours around the country lanes?!

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Didn't make it, alas. Couldn't get down the stairs. That pleasure will be there another night! How's your cold? Better, I hope. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
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    Hi DD

    I do hope you got some sleep lastnight and didn't keep waking up.

    How are you feeling today? a little better I hope.

    Sorry you didn't get down the stairs to your car but hopefully you will today.

    Wish I could send a magic wand (wish I had one) and banish your pain.

    Anyway you take care our lovely dd and try to rest as much as poss so that you are recharged for the week end

    Thinking of you
    JuliePF x
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    hi DD, how are you this morning? Hope you got some sleep last night. Seems you are in a bad flare. Would getting a depo injection help get you out of it? Maybe you don't have them....I find them useful at times. I do sympathise as am going into a bit of a flare myself and have upped my pred this morning. Hate doing it but hate the pain and swelling more. So hard to get a balance. Hope you have a better day today. Let us know how you get on.
    love S xx
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
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    Hey DD!

    Did you get any useful sleep last night?

    Nope, laptop not fixed yet. The company dragging their feet to fix it however the screen sometimes works for a few minutes at a time!

    Spotted you saying that perhaps you have to 'settle' for what limited improvements your meds can make? ...... NEVER SETTLE, PETAL !! I am a firm believer that there is ALWAYS an answer - just some answers prove very elusive for a while.

    I really wish you could get a decent sleep so that things will look a bit better for you.

    Thinking of you DD and wishing you big Zeds tonight xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I took radical action last night, the end of my thether being well and truly reached. 5mg extra pred and three 50mg tramadol. Drifted off to the soothing sounds of Molfsee by Ulrich Strauss (highly recommended, v relaxing). Result? Woke as usual, every 60-90 minutes with pain and pred sweats, sometimes one, sometimes the other, and occasionally both. I give up. I think I will go and break my pelvis, or summat like, anything that will require surgery and therefore a blast of GA. :D 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
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    Aw DD.

    My knees and ankles are half behaving today so am currently stomping my feet in a tantrum screaming out "this is sooooo unfair" on you.

    I have been busy staring into the mirror scowling at the huge lupus ulcer that has reappeared on the end of my nose and I swear I see my nose swelling up before my eyes however knowing what you are going through with the lack of sleep and pain has put my nose in perspective somewhat.

    So sorry DD. It seems to be happening more often, eh? x
  • frogmorton
    frogmorton Member Posts: 29,427
    edited 30. Nov -1, 00:00
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    Hi DD

    What a night eh?

    Like Carola's 'never settle petal' because it rhymes and that sort of thing appeals to me :?

    I know there's nothing much I can do to help, but just so's you know I AM here and I am rooting for you to have a rest from all this.

    Thing is the gaps between the 'good' times seems to be shrinking :shock: Worried.

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I don't give a damn. Not anymore. It is what it is and it will do what it will do. Mr DD is off to the footy tomorrow, so that means beer and curry. That usually works as a cheering-up scheme!

    Carola I hope this ulcer clears soon - how's the diet going? You must be at least two months in, if not more. How many of these things have you had? How long do they last? How badly do they hurt? Do you look like Rudolph? or even Rudolff? :D DD

    PS There is an upside: I have lost weight thanks to no appetite and despite steroids! Belt in another notch today, hurrah!
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
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    Hi DD,

    Sorry you didn't get to take your drive.

    That sounds a horrid and very long night. Don't you have ora-morph for the worst times? Is that not helping either? If not, you are going to have to face the docs or drink copious amounts of white grape medication or both.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    The ora is out of date and probably not worth the risk! Mind you tho, it could be interesting. :shock: 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
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    Hi DD
    Can you not get more Ora?
    What a night.....it sounds dreadful

    Love
    Hileena
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    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

    Hi DD, it is the good times we remember. I have missed out on so many good times with my friends but for what? They still carry on having a good time without me. Eventually they forget me, but I have made a big effort lately and it has left me with good things to think about.
    Daughter is much better thankyou, still got to get back on track but hopefully that will be soon.
    Take care
    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
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
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    OH DD if only I could wave a wand for you and get you some sleep.

    Sleep deprivation makes everything else so difficult to deal with.
    Now I know everyone else has already said this, but please, please, please don't keep suffering in silence (apart from telling us that is) and get yourself to the doctors ....... you would tell any of us not to settle for 'putting up with it' and would say to keep yelling until something is done ..... .so come on girl ...... do as you say :wink:

    if it helps there are many pocket-dwellers out there who will jump at a chance to yell and shout on your behalf, and I know you've got deep pockets that are just right for a forum party :wink:

    please please be kind to yourself and don't settle for what is right now, ask, badger, scream, yell, in fact do anything that gets people to listen to you and how it is for you right now.

    loads of wonky healing hugs (((((()))))))
    WOnky
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi DD,

    I am so sorry your still yuck. I know your very fatealistic and it is what it is and it will do as it does BUT just putting on the mother hen costume and totally agree with Iris........GET Help!

    I understand the delay has cost you, and I know there isn't a lot they can do but DD you can't have this so often and well I personally think they are letting you down......Bit cross about it as well!

    Pain and lack of sleep are such bad things to keep having..... You need a total meds review with someone who actually wants to help you! Please go see someone and make them send you to someone good!

    Right out of the mother hen costume now... I hope you know I am not getting at you, just this elf medication and suffering isn't right and I hate thinking of you in pain.

    My costume appears to be a seal...... :wink: Bit better than the 2 headed monster one I was in earlier :roll: ((((( ))))) and love Cris xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I quite liked you in that costume! I have to go to the doc's next week about these blasted BP tablets (which could also be partially responsible for all this shift - I took myself off them when they gave me three separate ones and I felt sooooo much better I hoped never to return but my god, they nag and nag and nag and nag) so I will talk to him then. I promise. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
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    Hi DD


    Sorry to read there's still no let up for you..

    It does sound like a 'fresh pair of eyes' on you. and all your medication. would be a good idea.

    Curry and grape juice sounds like a good idea...

    Take care

    Marion x
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
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    So sorry that things have not improved for you DD.
    Lack of sleep is the pits. :( Glad you have an appointment to see the Dr next week. As you say you have so many meds to deal with that it would only take one to upset the system.

    Wishing you a far better night tonight. Daisy will be ready to have your run out together when your ready. Fingers crossed it will be very soon.

    Lv, Ix
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi DD,

    Flower you need them to help you..... ask about the pain clinic, ask about the wonder drug I swear by and please stop self medicating cus you is worrying me......

    I must get out of the mother hen suit cus there might be a fox about :shock: Buckets of ((( )))'s, fortitude and stamina and be assured I will be in your pocket next week and leap out, with Gypsies borrowed mask and Nearly cape and give them hell if they don't help you! Love all sugar coated but meant :lol::lol: Cris xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    We don't have pain clinics up here, the budget doesn't run to them any more, nor the expert patient's programme or anything else remotely useful. The NHS managers do need their Beemers! I am feeling more cheerful tonight, the cope is doing its thing, I have stopped caring and that does remove a burden. Right, have turned off the fan, and put my top back on as I am now shivering! Give it five minutes, I'll be peeling it all off and putting the fan back on! I am more bothered about dorcas: this doesn't sound good. Is there a chance she will be kept in? 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
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    Hi DD
    Its not do as I say not as I do!!!!!!!!!!!!!! Like wonky says you would be telling us to get to the docs etc. I know you say ylou have an appt next week....WHEN next week? Jump up and down and scream until they listen to you
    I know what lack of sleep is like and its dreadful

    Love
    Hileena
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