11days to go! Tears, tantrums and the realness of no pain relief has kicked in

As I have said in previous blogs I am waiting to go back to the hospital to get scored for anti tnf, which is 11 days away.

My steroids are being reduced but when I dropped to 10mg this week in was stuck in bed, from bed i rang my consultant who said I could go back up to 20mg and drop to nothing before I see her. Next Saturday is the day all steroids, pain relief, sleeping tablets, brutans patches will stop so by the tuesday of my appointment I will be a crippled crying nightmare with a high score hopefully.

But today I realised whilst explaining all this to my grandad who is 86 and very concerned that next Saturday will b my last day of mobility, sleep and reletivly pain free on score of 1to10 I'm a steady 4 with all the stuff and I've come to terms 4 is my best.

What am I gunna do... Having little cry even now whilst typing. We all no the pain of a flare/ RA and I no it's coming but for the first time ever I'm gunna admit this....... I'm scared! Scared stiff of what the next two weeks have instore for me.

If it's not good at the hospital means more time off work and I'm still on probation so in my heart of hearts I think I know that every day off means a day closer to losing my job in the city which I worked so hard for. they have said my job is safe but how safe can it be, I was there a month before being taken off sulpazasine so I've been off sick longer than at work!

Speaking about it today has just opened a can of worms in my head and nowi can't stop thinking about everything!

As grandad said in his chuckly old way if I was a race horse they would of shot me by now :-)

6 Replies

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  • Oh Marnie, I'm so sorry I just wish I could help you you sound so desperate and confused. All I can do is support you on here, I know and I have said it before, and it's all you can tell yourself and that is it won't always be like this. I know you've heard the words before but it is true, don't think into the next few weeks, just take everyday as it comes.

    Worrying about your job and what will happen in the future isn't doing your RA any good, the RA will feed on worry and anxiety. It is hard but you have to try and focus on now and getting yourself through today and every day after that, like I say one day at a time.

    I know your scared, your young so that's understandable. All I can say is don't be scared and have faith that you will be put on a regime of drugs that will help you, and that will happen.

    I felt the same way as you many years ago,so I know exactly how your feeling, if you want to cry then go ahead, sometimes it can make you feel a little better, if only for a short while.

    Talk to your mom too, it's better to talk to others, she will support you as much as she can, she loves you and will always be there for you.

    I wish I could give you more support and I'm sorry that I can't, sorry with all my heart as I have been the very place you are now. I am however proof that things will improve, don't give up, you will get there.

    Take care and thinking of you.

    mand xx

  • Hi Marnie,

    I'm with Mand about this - and have also been in the same place as you. Try not to worry about tomorrow / next week / next month as no amount of worrying will influence the future and high stress levels can negatively affect your RA and make it harder to cope with pain.

    Although you are having to come off all anti inflammatory drugs, steroids and dmards you can take adequate pain relief - pain relief other than nsaids won't reduce the amount of inflammation after all. Do go to your gp or phone your rheumy team and say how frightened you are and ensure that you have adequate pain relief to cover you during this period. It may mean being doped up to the eyebrows on morphine but when you're in a lot of pain with badly swollen joints that can be a not unpleasant place to be.

    When things are difficult with this disease it's best to take life just an hour at a time and distract yourself as much as possible - borrow some dvds of films or tv series that make you laugh. Ensure that you have company when you want it and get support from your Mum :-)

    Things will improve for you - more than you are able to realise at present - hold onto this thought and have hope for the future. When things are hard always remember that 'this too will pass'.

    Blog as often as you need to and get support to help you through this:-

    Cece x

  • Yes Marnie Cece is right you can keep topped up on the pain relief I did mean to mention it to you but I had so much going through my mind, thinking about you and what to say to make you feel better I forgot.

    Anyway, like Cece said keeping topped up on pain relief wont affect your DAS score, you can't cope without anything, nobody can.

    You need proper DMARDS and treatment to help get your RA under control and hopefully that's what you will get on your next visit in 11 day time.

    So please make sure you keep topped up with pain relief, it's all your only option at the moment.

    mand xx

  • Thanks lovely ladies! Think I cracked this afternoon :-) I've been told I have to stop everything by my consultant can I really challenge what she says?? She brilliant and I do trust her my gp is crap so I stick to advice from the consultant but do you think I should make an appointment with the gp and explain what's happening?

    Sometimes I think it's just the not knowing how it works eg doctors vs consultants etc. I want an RA instruction manual!

    :-) I've cheered up a bit since mum got home from work and off watch the football tomorrow to watch the hunky men xxx

  • Marnie, take care. What something nice could you do for yourself while you wait for this go ahead? I've been on ant tnf for about ten years and it has enabled me to do many more things than before and I don't need painkillers any more. But/ and it's true that anxiety can make things worse, so if you can find a way of relaxing that would really help

    Xx

  • Mums taking me to town today for a push round the shops and a posh ice cream at this amazing ice cream place! :-) so that's today sorted! One day at a time :-)

    Also my mum is working from home next week so I'm not alone all day. Makes me sound really childish hahaha but I don't care, when I'm better I'm going to use every bit of my independence :-) x

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