Another one with a conundrum

[Wheezycat]

Hi all, I have started a bit of a cold, feel a bit rubbish. And, of course, my asthma has kicked in, so I have increased my Symbicort. My peakflow is down to marginally above 80% of my best, so not that bad at all, at least not yet.

However, when I looked at the asthma U.K. website I noticed that they have now removed all references to percentages, and that I find difficult. Though I am better at noticing when things are not quite right, it is not often except when either really unwell or reacting to exercise that it even occurs to me to take extra ventolin, so that rule of thumb is useless for me, has always been.

How are we now supposed to know when to seek help? If it is quite bad it is easy, but if borderline? I have so far been prone to leaving it longer than adviceable, though I am getting better at managing it. I miss the numbers! (And could, of course, still use them, even if that is no longer on any guidance.) What do the rest of you do? Especially you with moderate asthma, like me?

[EmmaF91 Community Ambassador]

Hi

I think maybe they took it off of the ‘patient’ pages, but it’s still there on the ‘professional’ pages;

asthma.org.uk/for-professio...

(Peak flow – in green, yellow and red sections)

There it states green >80% and red <60%.

Maybe asthma UK removed it because people (docs and patients!) over relying on the PF as an indicator for an attack and they are acknowledging that you can have issues bad enough to need ‘yellow’ without your PF changing.

Or they’ve removed as some people use different %’s... personally I use 75% and 50% mainly because I’m a severe, uncontrolled asthmatic and that’s what my hospital advised me so 🤷‍♀️

Use the numbers on your asthma plan like usual, especially if that’s what you rely on to prompt you to get help! I also ignore my symptoms and rely on my PF for prompts so... 😅

I hope that helps and that your cold finishes quickly without triggering your asthma badly! X

[Wheezycat in reply to EmmaF91]

Thanks! What you say makes sense - and, yes, i still use numbers, but not only. I hadn’t seen the professionals page. I will have a look.

[Yatzy in reply to EmmaF91]

Thanks for the link to the professional guidance on this site, Emma. Suddenly I have a much clearer overview of asthma management, and where my symptoms fit in to the whole picture.

And at what point I really need to seek medical intervention. I’m poor at this, though meticulous about day to day management of my medication and my triggers. I really really hate hospital admission so stay home with a sad little bag of nightwear and toiletries at the ready, but hanging on and hoping. I have my own personal recovery systems sorted, and so far they’ve worked, but now realise how close to the wind I sail sometimes. I’ll mend my ways!

Take care, Penny.

[EmmaF91 Community Ambassador in reply to Yatzy]

You’re welcome

Don’t worry I have a hospital ‘go bag’ too - it’s got like 5 days worth of stuff inside 😅. That was the average time I’d be admitted if I was bad so hoping to ‘reduce’ it now! I usually pack the ‘essentials’ in my rucksack when I go to a&e, just in case tho too (so I don’t look too ‘keen’ to stay 😂)

Look after yourself x

[Yatzy in reply to EmmaF91]

And you! Sounds as though we’re all the same about hospital avoidance.....and prep 😂🤣

But I’ll not take risks any longer as I sometimes have, hopefully. Perhaps I’ll get myself an asthma plan...I’ve never been offered one. Might help me to make crucial decisions 🤔😳 xx

[EmmaF91 Community Ambassador in reply to Yatzy]

I think no one likes hospital, and we asthmatics can have ‘frequent flyer’ cards! I think many of us (esp severe asthmatics) either think we’re not ‘bad’ enough for a&e until we’re reaching ‘resus’ levels, or forget that if we head in earlier then we’re less likely to be admitted!

Personally I’ve had poor treatment when I wasn’t really bad (moderate-severe attack, told it was anxiety, not really treated til I returned the next day even worse) - I’ve found that the docs struggle with diagnosing/treating ‘low level’ attacks so I just feel like I’m time wasting or a fraud for attending a&e then, even if the GP has sent me!

Print your own plan off ( asthma.org.uk/advice/manage... ), and either fill it in yourself, or take it with you next time you see someone! I definitely good at giving you the prompt to seek help, and where to go! X

[Yatzy in reply to EmmaF91]

Yes you are.....I’ll be back! You’re very helpful.

My exacerbations have majorly reduced, fortunately, since I reaserched through my triggers, and have been going to a lot of trouble to understand and avoid them, as far as humanly possible.

One turned out to be salbutamol.....wondered why it didn’t work! Also GP prescribed montelukast and it has calmed my initial responses to triggers. After I joined this site, he finally allowed me a home rescue pack, which took a lot of the fear out of things, almost abolishing my breathless Sundays.....those were the especially sad bag days, when I blessed the day Buteyo was born! Just realised I’m not doing B breathing every bedtime any more.....I’ll start again....don’t want to lose the knack or the confidence it gave me when things went pear shaped.

Have a good, breathing Sunday. It’s sunny here in Cheshire ☀️ xx

[Minushabens]

To some extent, I think seeking help is just about listening to your body & thinking "this isn't right", but I know what you mean about the numbers.

If it's any help, a couple of us put a spreadsheet together a while ago to measure peak flow variations over time. It's still a bit of a work in progress, but if you want it, let me know & I'll send you a copy.

[Wheezycat in reply to Minushabens]

Hi!

I would love your spread sheet! Thank you for offering!

Yes, I am well aware it is about listening to your body, but I have a significant history of ‘not-noticing-and-when-I-do-I-ignore-because-to-pay-attention-is-to-make-a-drama-out-of-nothing’, and it has landed me in hospital. So I have learned my lesson, but don’t fully (or much) trust my own judgement, even if I have learned to pay more attention. Luckily I have a friend who is a doctor, and she reads me the riot act when needed, but she lives the other end of the country. So, I like the extra support of numbers.

I have tried various spread sheets on line, but have found none of them entirely satisfying. One was quite good until they updated it and then it no longer made any sense. My best so far is my own spread sheet, but it isn’t brilliant either.

[lucia_m in reply to Wheezycat]

Managing borderline exacerbations is a real problem for me too. I know theoretically that I need to be on top of fluctuations and I’ve had plenty of wake up calls, but somehow it doesn’t stick. I wonder if there’s something in the brain that tells us to ignore low level symptoms just so we can get on with life and get things done!

[Wheezycat in reply to lucia_m]

Sounds about right! Pity it doesn’t tend to work!

[EmmaF91 Community Ambassador in reply to lucia_m]

Oh yes the ‘borderline’ exacerbation 😒 - when you’re following yellow, but constantly bounce in and out of red - what to do? - your GP can’t really do anything, but you don’t feel bad enough for hospital, as the blue pump sorta works 😕😅

Just be warned that ignoring low level symptoms may mean you stop noticing them altogether! When they did my histamine challenge I lost enough function to show asthma, didn’t feel asthmatic at all, but couldn’t ‘recover’ my spiro to normal without 10 puffs of vent plus a neb 🙄.

I had ‘lived’ at 50% for a few months by that point because nothing was helping other than constant hospital trips so only noticed symptoms at that level 😬 - I now notice at 60-70% tho so 🤗 (but I can still ignore symptoms if their not too bad 🤫). Like minushabens I can get told off when I finally admit myself to hospital/see my GP 😬😳😅

[Wheezycat in reply to EmmaF91]

I am not a severe asthmatic, and mostly I am fine, though I have had to learn to notice even small variations, becoming aware how my body is. It has not come naturally, only with effort. I am a ‘late onset asthmatic’, and I think we older people get looked at a bit differently. (I also have significant family history.) I don’t think allergies play a large part in my issues, but scents, smoke etc do, as I have become sensitive to them. I have only been in hospital once, for a few days, and I want to keep that record intact, so my aim is to nip problems in the bud, but without bothering professionals unnecessarily, only when I really need them, as I do from time to time. I do find that hard, to know when it is one or the other.

[Minushabens in reply to Wheezycat]

If you let me know where to send it, I’ll email it to you. If there’s something that would help make it work better for you as well, let me know & I can try & add it in.

I’ve had the riot act read to me by a few doctors in my time, so trust me, I can relate to what you’re saying!!

[Wheezycat in reply to Minushabens]

I have messaged you my email address. Thank you, again.