no get up and go

hi all hope all had a nice xmas and new year dont like to moan but i thought if i could just let off some steam here instead of my poor hubby and kids been in a bad way now since 10th dec been in hospital with dehydration on a drip for 3 days seemed to help for a day back to being ill not getting any better seen the docs so many times since then keep getting more meds but nothing working just feel am watching life go by my hands are aching writing this wish there was a wee magic pill i could take just to get through sick of being sick sorry for moaning am sure it will pass hope all keeping well just now tc and ty for this site xxxxx

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  • Oh me dear friend, My 'get up and go' got up and left years ago. I have now learnt how to cope (I am 65 and was diagnosed 30years ago) I start the day with breakfast - then Hot bath 'till the pills kick in (about 20 mins in the bath) helps.

    DON'T EVER worry about having a good old moan - we all need someone who KNOWS what you are going through.

    KEEP going back to your doctors re-pain control, they will get fed up of you and get off their bums and keep trying ones untill they find a suitable combination that work. I also had major Spine surgery (Extra pain) but these are just some of what I am on.

    Amitriptyline 25.mg 2 at night.

    Naproxen (for the inflamation) 500mg.tabs 1 twice a day

    Nitrazepam 5mg 1 @ night

    Paracetamol 500mg. 2 Four times a day

    Tramadol 50 mg. 2 - 3 times a day

    Plaqenil 200mg 1 twice a day

    Prednisolone 5mg 1 a day (this varies depending on what my specialist wants and when I am realy bad to get it back in control)

    Good luck my friend - get that appiontment made.

    LISTEN to your body, if it says "don't do that - well Don't - ASK people for help you will be surprised how many will. Get your shopping delivered (I use Tesco) if you can. My local Butcher is very good and I just phone him up with my order and he brings it the same day - ALL good butchers do this, they Need YOU as much as you need them. Print off any info on Lupus and sit and go through the important things that apply to you with them - you will be surprised just how much children understand if you are Honest with them, we then called them 'bad body days' and they could tell when I was having one, which helped everyone.

    Have a good scream when the house is empty, Amazing how good that feels - or you can do this with a friend, you then Both have a laugh about what you have just done.

    Another thing I do when I am VERY low, I lock the bathroom door (Only time I do so family know it is a ME time) I have a good cry and hold the shower head over my head to 'wash away' the hurt. xxx

  • Hi Angie, just to say I'm thinking of you. I hope things will change for the better very soon. Lots of love, xxx

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