Moan- always vowed I'd never do this!

Hi everyone.

When I first started reading the forum (years ago) I always said I'd never moan bout my own situation as people on here make me look well.

I'm a brittle asthmatic who was not diagnosed as asthmatic til I was 30 yrs old. Almost immediately my asthma never wanted to be controlled ( a bit like me really). I started off on basic meds but had to keep stepping up as nothing worked- I was soon on regular pred (which I hate). Piled on 5 stone (thanks to pred) and the asthma got worse. About 4 years ago I was ventilated for the first time- something I'd always dreaded- being a nurse made it worse (no knowledge is better than a little knowledge). My consultant felt it was hormone related and after many tests we agreed a hysterectomy would help- I was 37 when I had that done. It did help for a while but then came back with a vengence. Eventually 2 years ago I was accepted for funding for xolair- my last resort- and it worked!! My asthma was 80% improved- reduced pred to 5-10mg (was on 40mg maintance dose) and could get on with my life although a little limited.

I'd not been admitted for a year but a month ago I was admitted and ventilated for the 15th time- this time though they couldn't get me off the vent and I was stuck on it for two weeks (which may not be long compaired to some but one day on the vent is one day too long). It was like a living horror story- because they were trying to get me off it I had minimal sedation so was awale for most of the time. I've just got home- my arms and legs are weak my lungs are just managing on 40mg pred and I feel rubbish (exhaused). But because I'm home people thinnk I'm ok again and so can carry on like normal. Even my GP thinks I'm fit to start back at work full time on monday---------------------

Appologies for the moan= as I'm not a moaner but I'm so tired, worried and fed up-------

Truly x

4 Replies

  • Hi Truly,

    Sorry to hear that you have had such a tough time with your asthma. Let me assure you that you are not moaning you are looking for some unerstanding and reassurance. This is definately the best place to come for both of those things.

    I agree that people don't realise that even though you aren't in hospital you can still suffer so much and feel ill. All you can do is keep reminding them that you are still recovering and nowhere near back to normal.

    Being ventilated is terribly traumatic especially when you were aware of what was happening. It always takes me ages to get over being ventilated.

    If you don't feel ready to return to work see if you can speak to your gp again and get him to understand how you feel.

    I hope you feel better soon.


  • HI Truly,

    you have had it rough and your body will need along time to

    get over what you have been through and need time to rest up.

    Yes funny how people think your well after hosp its so not true.

    Hope you will have help and someone do your shopping etc

    Good luck ,love glynis xxx

  • Wow, if I'd been through what you have a would have moaned a lot more!! Have the same problem with hormone related asthma and all the rubbish that goes with naff hormones. wanted a hysterectomy but doc thought that was funny!

    If you don't feel ready, make sure doc knows. when you have been really ill your confidence is severely knocked as slowly you have to stop doing things. Getting back on track takes a long time, you should be going back part time,just a few hours daily. Your GP needs telling he's wrong, how uncaring!

    Take care

    Kate x

  • Thanks guys!

    I made an appt to see a different GP who was very understanding- so I don't have to go back to work yet. I am just starting to feel a little bit better a month after being ventilated.

    It's nice to know people on here understand as most people have the ""just"" asthma attitude.

    Thanks for all the support I get off this forum- keep up the good work

    Truly x x x xx

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