Long 7 weeks

Really I want an moan and a bit of support so sorry for that, I might be in the wrong place.

I have been in and out of hospital for 7 weeks with asthma complications from viral pleurisy.

The pain has been so bad that even the morphine has sometimes not helped and then my sats drop off and I need more ventilation help. To many scary days on ITU and HDU.

I was just getting back on track and managed church this Sunday when yet another cold has knocked me back to steroids and nebs again (although not quite hospital yet).

The doctors today have said I am not fit to work but they are happy to view it again Thursday, but I have to have a higher than normal level for going to A&E as they are worried about me and I normally like most people leave it late.

I have started the new Flutiform inhaler space age silver thing that seemed to be helping but I'm not sure.

The questions I have and support I could do with our many sorry:-

Does anyone else have experience with Flutiform?

Are there any better ways to manage the pain (I use heat, paracetamol, co dine, morphine when needed and an anti inflammatory)?

I have some small amounts of mould growing on my new doors, has anyone tried a de-humdiffier to help with this?

Is there anything more I can do to help recover improve my asthma, my main allergy is dust mite and virus seem to be the biggest problem to put me in hospital as I have a weakened immune system from adrenal gland failure.

It feels like it will never get better one step forward and three back at the moment. When will it start to improve, hard one I know?

Sorry for the rant and long list but thanks for reading.

Amanda X

4 Replies

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  • Hi Amanda,

    It's good to rant and let your feelings out, more so on paper or typing on here (we are here to help each other :).

    This winter has been terrible for viruses ect, I have been in and out of hospital myself, 12 times in 7 months!!! Eeek :) I have had viral flu, I've had pleurisy too but my main problem is chest infection that won't budge its been there since the new year!! That's enough about, back too you.

    I can't really comment on medicine I do use occasionally but unfortunately I'm allergic to anti inflammatory meds and pefidene so pain relief is hard to come across for me. I use meditation a technique used in yoga called mindfulness its where you channel your mind to focus on one thing so your mind doesn't wonder this helps because it takes away the secondary stress of pain, practice by making a cuppa and only focus your mind on that and nothing else :).

    I'm also working on a asthma diet (I'm an ex chef) which is high in magnesium, selenium, potassium, vitamin b6,12, C,D. Wack them into Google and see the foods high in them. Also do you take vitamin D capsules ? Ask you doc. And have you had the HIB vaccine?

    Just try and stay positive and keep smiling :)

  • Hi Amanda,

    Sorry to hear you've not been having a good time - sounds horrible! Definitely don't worry about moaning and asking for support here - as far as I know this is partly what the board is for.

    I'm not sure I can really help much with the practical side of things; what do your consultants etc say? Have you had a chance to sit down and talk things through or has it all been too much 'deal with this urgent problem now?' Are you due to see them again soon? Because I'm thinking it might be worth saying all this to them and asking what ideas they might have. If you're not already at one, and your current team don't have any more ideas or suggestions for how you can improve, then it might be worth asking if you can be referred to a specialist centre for difficult asthma.

    Really hoping things do get better for you!

  • Sorry to hear you haven't been feeling well for a while. I've never had pleurisy but I understand it hurts a great deal.

    Hopefully you'll get some good answers here on this thread, but also do check out the past threads if you haven't already. There are a number of older threads that have some good ideas on the various questions you raise. You'll also see that you are not alone in your frustration.

    To find the old threads (it isn't obvious how - not at least to me), type in any of the following words into the search box next to the word ""Forum"" - that's the *second* search box on the webpage, the one *below* the header/menubar:

    pleurisy

    pain

    mold

    dehumidifiers

    etc.

    Hope things improve quickly.

  • Sorry to hear you are suffering.

    You will certainly find lots of helpful ideas, support and the been there done that empathy.

    Hope you get to the bottom of why you are suffering at the moment.

    Getting rd of the mould is a good idea and that can be a trigger in a lot of people, but maybe get someone else without chest problems to do it whilst you are not there as using household cleaners and wiping the mould spores around is not a good idea and probably a recipe for an asthma attck!

    Take care x

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