sorry just feeling emotional about it all!!!

Hi

I really need somewhere to have a good moan and say how i feel, i dont expect anyone to reply just have allways found this a good place to let of steam so here goes!!

I have just been discharged again form hospital after one week admission, this is my 9th admission this year and seemed to be spending more time in than out. i am so fed up with the situation and think my local consultant is getting to that point as well, i know he has no answeres and has tried his best with little success, i totally understand this but feel like he is withdrawing his support a bit. i am under the brompton and waiting to go in for some tests but yet again these will be put of as my pred dose will be to high, they want it at about 10mg i am currrently on 40mg and was down to 17.5mg before last admission, it just seems like a constant battle which i am not sure i can be bothered with anymore!!

I saw my consultant this morning and whilst he was nice you could see the frustration in the way he was and i think i was so tired and fed up i didint tell him how i feel as i didnt want to burst into tears about it all, so as a result i am hope (which is good) but with no plan, no follow up just been told to do as i want with steroids and wait for the dose to be right to go to the brompton, i think emotionally and physicaly i feel exhausted by it all

so i guess the question is what now, i guess to carry on along that road of complete instabilitiy, i am due to go back to work on saturday and whilst i want to and i am determined not to give up work i think my collegues are so fed up with me going of sick at the drop of a hat and no one picks up my job i am just left with more to do when i go back.

i guess everyone feels like this when they have admission etc and i will proberly feel different tomorrow about it all, so thanks if you have read this i feel better just writing it down.

thanks

sarah

4 Replies

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  • I hope you do feel better tomorrow Sarah! When things are going well time seems to speed up and whiz by yet when life is harder to deal with days seem to last weeks, and weeks months, making everything more difficult! Sending you hugs and lots of luck for an admission free patch so you can get that pred dose down again!

    Lee

  • Hey Sarah,

    Just wanted to send you a hug, its really horrible when you feel like nothings changing and your just being addmitted all the time (I feel the same). Could you phone Brompton and tell them about the difficulty your having at getting your pred down? I think (not 100% sure) when I had my initial tests at Birmingham Heartlands my pred was 20mg or maybe even 30mg... so perhaps they could re-assess your situation? The other thing is I'm guessing you don't qualify for xolair? because it seams to be having a really positie effect on lots of people.

    PM me if you want to moan or chat,

    ally x

  • Sarah, call or email the RBH but not for 2 weeks because Dr Menzies-Gow and the ANS are on holiday. explain you can't get your pred down and I am sure something will be sorted out.

    Hugs

    Bex

  • Thank you

    Thankyou to you all for your words of support, i very much appreciate it. I will give the brompton a call in a couple of weeks when they are all back.

    I have had a day of making decisions, which includes having some time of work (which has been difficult) to see if this helps the situtaion, fingers crossed things will settle down for a while.

    Thanks once again

    sarah

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