After a good few days..

it seems I'm on payback now! Lots of extra Symbicort this morning, tight chest and can't get rid of the phlegm :-s

Yuck!

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Aww sorry that your having a bad day, know how you feel tho and also on lots of extra symbicort, do you ever loose count? I do ESP when I get close to my 16 puffs lol, or is it just my brain!

Gentle hugs to you

Snowy xx

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Snap!!!

I'm exactly the same today piglet, went to work for my 3 hours pjqsed return and just had people constantly asking if I was ok ad I looked sooooo rough.

Definitely woke up with no spoons today :-S

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I ALWAYS forget how much Symbicort I've taken. And I'm not sure - if my nurse says I can take up to 12 doses, does that mean on top of my regular ones, or are the regular ones included?

Sorry you're having a bad day Angelica. I'm a bit low on spoons too Although I've perked up a bit since I just booked train tickets for a trip to London in a few weeks. We've got 1st class tickets as it wasn't much more expensive than standard, and for a 3 hour journey the extra seemed worth it. Now we just need a hotel.

I've been wondering what I want to do there. I want to go to St Paul's and climb into the dome, but I'm not sure how realistic that is So, asthma-friendly back up plans required

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oh no, sorry you're having bad days. My chest is playing up as well and I'm in Italy for work/pleasure. Lovely weather but last night I was so SOB I was getting a bit worried that I'd end up inside an Italian Costa (and actually Costa was the first thing I saw at the airport lol). But luckily all the reliever finallly started doing something.

I hope you both have better days ahead. Piglet, trying to think of good things to do. Greenwich is nice but hard to get to (esp at the weekend) and maybe too much walking. Maybe a riverboat tour? Bit cheesy and touristy I know but you'd be sitting down (though would be weather-dependent). Museums are more on one level and you can do just a bit so maybe better?

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I'm sooooo glad you've both said that about the symbicort! I started on it Monday and I keep loosing track as I'm not used to thinking about it that much....oops!!

Its also giving me the serious shakes :-S

London will be fab and 1st class will be much nicer and a bit more peaceful. X

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Angelica, totally forgot to say before... I'm not on Symbicort (at the moment, may be back on it) but I can't even remember how many puffs of Intal I've had when I only take 2 at a time! As for how much reliever I've had...forget it lol. Makes PF diaries a little more challenging lol.

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Angelica, totally forgot to say before... I'm not on Symbicort (at the moment, may be back on it) but I can't even remember how many puffs of Intal I've had when I only take 2 at a time! As for how much reliever I've had...forget it. Makes PF diaries a little more challenging lol.

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I now have the perfect answer!

My new dr dreamy gave me one of those click counters, think they a used for recording laps with runners etc but whatever they are meant for is fab, I take 10 on maint dose and up to another 6 so now I just click away and can see how many I've had!

Brilliant

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Ooh, cunning! I'll investigate one of those clicky thingies!

I've got a few ideas of things I'd like to do. I think I may settle for Evensong at St Paul's, been looking and even just to climb to the lowest gallery it's over 200 steps. Right to the top it's over 600! :-0 I hope they're singing something good, the music list hasn't been published that far ahead.

Also considering Hampton Court, OH has a thing for bridges so we're going to have a look in Tower Bridge and maybe into the Tower as well.

OH is actually really obsessed and geeky about bridges (we went to Paris, came back with more photos of bridges than just about anything else!).

We're also thinking about the Wellcome collection's brains exhibition. So much potential...

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Piglet, have you thought of the London eye? You can sit all the way round if you need too. I just love the views! And you see bridges! lol.

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why is it that our lungs wont just behave? why is it that they will give us those good couple of days and then pay us back for using a couple more spoons that we thought we had, but obviously we didnt? i understand just how you feel Piglet. sounds like Symbicort might not be the best answer for you? me and Islandmedic have both tried the Symbi Smart system and it was just no good!

i hope you have a fab time in London, havent been there since 1988 (when it was a treat with my Mum for passing my GCSE's) so i cant really comment on where might be best to visit! i remember the Ritz Hotel for afternoon tea, but this would only be any good if you arent allergic to dairy as the scones with cream and fresh strawberries were to die for!!!

take care and i hope you have a better day tomorrow xx ><>

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It's difficult. The Symbicort is definitely a better fit than the brown one, and then the Seretide. So I don't know.

And then there's the usual ""I can't hear a wheeze"" and my PF is almost ALWAYS normal (between 400 and 470) so I confuse them. And most of the tests at the hospital were normal...

I feel like a time waster half the time tbh.

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Piglet,

Don't feel a time-waster. Just remember you are one of us 'weird ones' who don't show up as typical asthma. There are a few of us on here and we have all felt like or feel like this during appts. It is frustrating not to always get a clear diagnosis but it doesn't mean they can't find a solution med-wise.

In my last letter from the consultant he has said my response to the nebuliser is suggestive of asthma but is still undecided with my diagnosis. He has said that he believes I may have had a virus as a child that has affected my lungs but it doesn't show up as asthma. Fortunately, it does respond to some medications. Just remember, it is not normal to have these symptoms and go with that. That is basically how I have kept going for the last 25 years as an odd one.

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Aww Piglet, I am another 'weird' one and I totally understand how you feel and how frustrating it is! Have you worked out your actual best PF? My predicted best is 470 but as I've just said on another post I would be calling for help if I blew that! It may be that your actual PF is higher than your predicted and if you knew what it was you could measure your readings against that.

You're definitely not a time-waster though. Feeling like this isn't normal and the doctors should realise that your life shouldn't be controlled by your breathing (but they sometimes don't listen).

And I haven't yet found a steroid combo that works - not convinced by cons wanting to try Symbicort again...

On a totally different note, Wellcome brains exhibition?! How did I not know about this? Definitely go (though I am a brain geek so of course I would say this). But thanks for mentioning it!

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470 is my actual very best, and the funny thing is that I blew it in the middle of a nasty chest infection! As a weird aside, there is one GP at my practice who consistently exaggerates the PFs I blow in appointments with him by at least 30 - once it was 50! I won't see him any more although he is meant to be one of the GPs in the practice who is good with respiratory stuff

Philomela - the Saturday of the weekend we're going to London (14th April) they have a programme of cool stuff on wellcomecollection.org/what...

We're going to have a list of ideas, with some back ups for poor weather etc.