Title is because this is what it feels like atm - I climb a small ladder then go down a big snake!!
I'm seeing my cons next week - ughh what fun, need not say I would rather be having root canal or swimming with crocodiles.
I'm pretty frustrated atm: a few weeks ago my breathing was NOT good to the point where when I managed to get a neb at OOH I was actually made aware of what vaguely normal breathing was like; it had been so tight and such hard work till then though didn't last long. But - clear chest and not much help from OOH and A&E (as far as I know your sats don't have to have dropped to get nebs?! And I wish they'd not given up on getting blood gasses). I was on pred which seemed to help a bit as I'm now better than I was but the nights are not brilliant and still having quite a few days where I struggle. My PF is actually worse than it was when I was really struggling, but looking at charts I now realise this is what it does - it hovers around bottom of green zone for a bit and then drops into yellow zone where it will stick for AGES even when I'm getting better - same last time.
In general I feel like I am stuck in the 'call GP' part but I know they are stuck and can't help as they don't know what to do. And OOH etc just did not seem interested - they either told me I'd been on pred long enough so should reduce, while not offering anything helpful except 'carry on as you are and review'. I wouldn't BE there if what I was doing at home was enough! I feel like I am almost always stuck in this kind of limbo yellow zone and that very little has improved over the last couple of years. That's not to say I can't have good times: I do, lungs were great in Cornwall recently for example and showed me a level of control I'd be happy with, but I seem to spend far more time in the not really feeling so great but not bad enough for anyone to want to do something about it zone.
Cons's plan is I can have pred when PF is below 350, but my PF just doesn't work like that (he is however really really into using PF as a guide), and I also have no other options than pred in the yellow zone. So this hasn't really worked and the lovely asthma nurse at the hospital where I go, who is new, agreed with my GP that I should have it and stick on it even though PF had not reached this level - I sounded not so good when on phone to her.
Anyway sorry for the rambling background. My point, if you've got this far, is that I want to ask my cons what I can do about NOT sticking in the yellow zone, as I really don't feel great being like this so much plus it makes me a bit stupid and slow and I am starting a new job where I need my brain! I messed up a previous job partly because of being so tired and SOB all the time that I made silly mistakes, and I don't want to do it again with a job which I actually think I will like and really want to do well in. Points are:
-Cons has made noises about Xolair if IgE is high enough?!! DIdn't really think I was that severe, or severe at all, v confusing esp when he then writes letters about me overusing reliever? He said he wants to collect evidence, and that it would help me when dealing with other drs who think it's anxiety - fair enough, but it means I don't really know what he's thinking about my asthma - he started off with 'over-perception', changed tack last time but letter was not helpful as went on about overuse of reliever? If I were eligible for Xolair (which I doubt, IgE used to be too high for it and is now too low for it, wtf, was tested again last time?) I don't know how I feel about that as with a full time job it seems hard to fit in. Anyone else at the not horrendously severe end/worse than me but working full time had experience of this, just in case it IS in fact an option which I doubt it will be?
-I note that several of you on here seem to have an extra steroid inhaler without the LABA to top up when bad - thought I'd ask about that as better than pred and can't up Symbicort! Are those of you on that already on high doses of combi inhaler? I get the impression I can't have more Symbicort - on 3 puffs twice a day of the 400/12, which sometimes is great and sometimes not.
-Cons mentioned Spiriva as a possibility. Anyone found that helped? And can it be used as well as Atrovent? I use that as a reliever atm and it seems to work well for me but can you have both? Cons doesn't approve of Ventolin so if I can't have Atro as well as Spiriva not sure what I'd do (Bricanyl maybe?)
-Anything else I could ask about? Not asking for medical advice but for things people have tried, below what I think of as the 'really severe' level (stuff like home nebs and subcut etc since thankfully I am nowhere near that level and hope I never will be).
-Confusion re spirometry: he dismisses low results as technique, but I asked nurse in clinic last time speciifically as she knows me and was commenting that the numbers weren't good for me, and she said my technique seemed fine and she thought it was an accurate reading that was just low. Really confusing!!
This is sort of me thinking things out as I type so sorry if it makes no sense. I just feel like I want things to move forward and don't really know how to do it as I find it's really hard to know what cons is thinking! Last appt went better, but still in the dark and want some more workable solutions and for him to listen properly to me re PF (he says he is but I am not convinced given his plan).
I know things won't change overnight but it feels like I have been waiting a LONG time for things to change and that because I don't have bad attacks it's not seen as a priority despite the ongoing QoL issues. I get the impression that how my cons thinks I handle things is not what actually happens, but it's really hard to know. He has never seen me at my worst, which ok is not as bad as many but more than enough thank you and not down to anxiety as I do stay calm, so I think this gives him the idea that I overreact a lot (I don't think I do because I worry I would be dismissed so wait ages before doing anything) and that my worst is what he sees (it really isn't, my lungs would never be so useful as to act up in clinic!)
Thanks for reading if you got this far...brain seriously on holiday, I need sleep! And changing GPs soon...so will have to start all over again with the explanations and hope they are understanding and broad-minded.
Just to start off, I know you in the real world, and it definitely isn't just anxiety. I know how calm you stay, how long you leave it and how much convincing you take to even think about ringing 111. You scare me sometimes by the way that you think that my level is almost ""normal"" in terms of asthma and that you should leave it that long. Well, as you know, my opinion is that is silly and you need to get help way before you do
Yellow zone PF - NOT ideal, all guidelines say that this shouldn't be happening and that something should be being done! Even if it is ""just"" pred!
I am REALLY cross with how they handled you the other week in A&E, especially as they inflicted the pain of trying to do ABGs on you without even succeeding and then not treating you!! If it is any help, the other day, while I was in resus, my sats were 98%, yet when they did an ABG my actual oxygen sats were 72% (I know that you already know this, but just saying!), so NO your sats don't have to drop to be really ill!!! AND I know you weren't able to talk, as I spoke to you!!
RE your cons' plan that your PF should drop to below 350 before getting help, this isn't realistic. I sometimes do drop to this on admission, but other tomes don't. Imagine what you'd say to me if I said I needed to wait until I dropped below 50%? your PB is 600!! Fools!
If its any help, I used to be on Symbicort 400/12, and was on the SMART regime (I know its not licenced) so could take upto 16 puffs a day. So there should be some leeway with how much you can take. You're under a cons, so he can go against licence - like you're montelukast dose isn't licenced!
Spriva - this is a long acting version of atrovent, but from my understanding (what my cons said) is that you cant take the two together. so if your cons is all for atrovent as the only reliever, then it wouldn't surprise me if this was a no go. I've never tried bracinyl, but tempted to see if it would help me! So worth a go maybe? Not looked into it and don't know which it is most similar to in terms of reliever. My cons is very for vento, so yours confuses me!
My personal best PF is 620, at 450 my spirometry cam eback as 118% of predicted and felt awful at the time. Spiro is only useful if they take into consideration your best!
Hope this helps in some way! I will add more if I think of is!! Stick in there!! *hugs* Laura xxx
I share your frustration re spirometry etc. One of my drs said the other day that while my 'well' LF shows good technique, my last lost were just rubbish - not indicative of me struggling, just rubbish results!! They dont seem to understand that I dont suddenly forget how to do it when Im rough, Im UNABLE to do it!!
There are still options. Whats the reason atrovent is your only reliever? It may be that either salb or turbutaline in some form might help (Im on bambuterol tabs at present which help a bit).
I actually got so frustrated the other day I suggested my cons came on here and saw for himself that Im not the only one with my supposedly 'unique' problems and that theres a whole bunch of us feeling like we are banging our heads against the wall!
Sorry, this is more joining in a rant than helpful advice!
Thanks Sparkly! I would be v frustrated in your shoes - yes there seems to be a collective frustration here atm!
I had an OOH dr make me do spiro on his pocket device once (who invented that instrument of torture? I'd have some strong words for them). It was above predicted but I knew not brilliant for me, but he was on about above predicted so must be ok. I also did say that I am terrible at spiro anyway and like you, worse when struggling. He was very dismissive of PF but tbh, even that can make me feel rubbish if struggling and yes, it may be more primitive and not perfect - I defo know that - but at least I have something to compare it against ie other readings! The pocket spiro ones pre and post neb were all over the place, whereas my PF done before I went to OOH and my PF done afterwards showed a BIG difference in line with me feeling better for a couple of hours. I think he maybe thought the improvement was in my head, but then why would I still feel a little tight after 2 nebs - I was better but not entirely, and as I said PF< which I do at least know how to do, showed a difference!
The reason I have Atro is my cons doesn't like me to take too much Vento - he considers that in excess it ends up causing more inflammation; I gather like LABAs can cause problems, though taking steroids minimises this. However, his plan is if I drop below 50% I can have 2 puffs of Vento. I feel if I ever got to that point then 2 puffs of Vento might not be enough... He did say that as attacks come on gradually if I am above 50% PF, on pred (according to the 350 plan) and struggling symptom wise then I should go to hospital but then this relies also on getting below 350 - some blows have been at that recently but then I can do a bit higher so doesn't count.
Laura -thanks - really helps to hear that from someone else. I knew about what your PFs did and it's really made me not agree with my cons's rather rigid views on 'if you are not below a certain level it is not asthma'. I think I'd managed to persuade him I don't have anxiety, but he seemed to think if I were above 50% and struggling to talk it must be anxiety. He has seen me only in clinic (where I am indeed a bit anxious because I worry about what they'll say, though rarely very bad lungwise) and never at the point where I call for help, which mainly consists of me getting pissed off at my evening being disrupted, a desire to sleep and annoyance with OOH. I don't know why they find it so hard to believe we don't all panic in that situation! If I were less polite I'd be tempted to say 'just because YOU couldn't handle that without panicking doesn't mean I can't'!
I really want a proper plan that works for me. Also for some occasional guideline following. I am tempted to go on Google Scholar and track down some papers about using PF for management. Also really tempted to break out the stats program again to see if there's been significant improvement in my pre-post treatment, though cba to type the figures in lol.
Snakes and ladders is a good way of describing it Philomela. That's exactly what I feel it's like and there are just a few too many snakes. Maybe Spiriva would be good and if you can't keep using the atro while on it then like you say you could switch to bricanyl or ventolin. I'll be interested to hear what sort of directions your cons goes in (hopefully he will add/try something different) to get a better QoL for you, it's just not fair of them to keep things as they are now. And the whole pred thing needs sorting too, meds should be stepped up when in the yellow zone for while, you shouldn't have to wait til pf is 350 (that's a little less than 60% for you isn't it?), sorry if that sounds like that's directed at you, it's a ramble and moan directed at your cons etc for being frustratingly inactive and non understanding. I'm lucky in that I have understanding GPs, nurse and cons and have pred at home and my threshold for starting it is so much more realistic than your action plan dictates. I really hope they help you gain better control soon. x
Addition- Theophylline? I wonder if it would work for you if Spiriva either doesn't work or isn't an option for your cons.
hehe thanks Lou, defo too many snakes and I think they are frequently wrapped round our chests as well!
Thanks for your reply - I didn't think it was aimed at me, but nice to have another person say the cons's plan is not realistic as I always get paranoid and second-guess. It's just really hard to know what to think as my cons says things that make sense - I think - but then the letter doesn't seem to match up which is confusing. I do appreciate what he's saying about needing to get a better picture of things and more data but then when I get bad I don't know what to do. So I think this time I might have to put my foot down and say I do get that he needs data but I've been in this position for ages and it's not enough to say he doesn't want me on pred without finding an alternative for non-severe flares.
I guess theophylline might be an option though he's not mentioned it; not keen on the feeling sick and the level adjustment thing mind you so would prefer if something else worked. On the other hand I'm not going to be too picky at this point - I know I'm not really severe and as I said not at the level of pulling out the big guns, but on a fair amount which is not helping as much as it might. I would just hope that he is open-minded and considering things to get me out of the yellow zone as I am so tired atm I can barely get through a meal out and talk to people. I have been busy recently but I shouldn't be this tired! I think it's partly a lack of sleep (I get the time in bed but it doesn't seem to be good quality as I wake up exhausted) and possibly also the effort of breathing when it's not good? Don't think it's anything like anaemia etc because the vampires are always at me and I therefore know that my Hb level is really good and CBC is always normal - I'm practically a man Hb wise lol, probably because I'm such a carnivore and rarely meet a plate of red meat I don't like. But being this tired is no way to start a new job - they'll think I'm some sort of narcoleptic or out all night partying, and it certainly doesn't improve my ability to think.
You have been dealing with this for such a long time, I remember us both first chatting on here and neither of us have successfully managed to get control of our asthma since.. It is so frustrating!!
I am on untiphyllin and have never felt sick, it has helped me as much as the Symbicort 400 and for me is one of my 'key' medications.
I think when you speak to your cons, remind him of how long this has been going on and how fed up with it all you are. I think you do need something added as even with pred you are not perfect.
Loads of luck with your appt!! xxx
Hi Philomela,
Feeling a bit rubbishy so sorry if I just repeat what others have said. However, I know exactly how you feel!
Luckily, my GP and asthma nurse have recently turned a corner in how they deal with me. I think it was the fact that Imwas regularly going in tired and therefore tearful about the impact it is having on my life. I think they also realise that I am usually really level headed. My GP said he wishes he just give me sleeping tablets for a few days so I could get a good night!
Anyway, I have Flixotide to use on top of 2 puffs of Seretide 250 twice a day. It is quite hard not to use it all the time but my instructions for using it are based on how I feel rather than pf (eg I knew I had a cold coming a few weeks ago so started the extra steriod to help stopping getting it that far - if that makes sense). I was given this as I often found myself on several weeks of pred so the idea is that it has time to kick in before I finish pred (realistically I always end up on it). It has worked in the past but not sure it is at the moment. When I was on Symbicort SMART (regularly taking 12 puffs of 2006/6 a day) I had Pulmicort 200 to top up with. Might be worth asking cons about it. if it helps, I got it after I explained that I needed some way to up my meds and take control as often it took me a while to get help.
Spiriva - my GP changed my atrovent to Spiriva because, while atrovent worked during the day, it wasn't long acting enough to see ,e through the night. I think it has helped (been on it four weeks) but my GP wants to see what I am like without it (I will be phoning in the morning because I feel rubbish but not sure whether it is the lack of Sprivia or just feeling rubbish at the end of pred and still got cold). My GP said it wouldn't be advisable to keep taking the atrovent at the same time. If you tried Spiriva, could you change the reliever? I CAN't remember why you changed from Ventolin but I have a terrible heart rate/shakes with Ventolin but Bricanyl is better. I do still have Ventolin for when I can't actually take the turbohaler.
Xolair - can't help on this one. I did think it would be my wonder drug but my IgE levels are way too high! My cons has often mentioned Theophylline but they are not keen on it with my heart. I am hoping to get my cardiac cons opinion on it next month as so many people said it should work for me in theory and I am willing to try pretty much anything!
Spiro - can't help really but my cons often explained the importance at looking at the relationship between all the readings and not just one (apparently mine do not fit the typical pattern even though FEV1 is about expected (others are really high and FEF is really low!
Sorry if this seems like lots of trails of pointless thought and for spelling errors (I'm on my phone).
Hoping your appointment goes well.
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Spiro - can't help really but my cons often explained the importance at looking at the relationship between all the readings and not just one (apparently mine do not fit the typical pattern even though FEV1 is about expected (others are really high and FEF is really low!
Your cons makes a lot of sense to me.
I also have a similar pattern at present - FEF drops, forced exhales become really short (like 1-3 seconds), and FEV1 climbs! When you look at the flow-volume graph it is obvious what is happening: I'm slowing down the peak flow so that nothing shuts down inside my lungs from trying to force too hard, and to compensate I'm blowing at the lower peak for a longer time. The net result is a lower FEF but a higher FEV1. (FEV1 isn't really a volume - its the average flow rate over the first second of exhalation).
It is very frustrating: at least in cases of difficult asthma, the two pulmonologists I""ve seen from my local hospital simply refuse to diagnose asthma unless one has an FEV1 that is 80% or less below predicted. My last spirometry had an FEF that was 75% of my personal best and I had moderate symptoms to match, but my FEV1 was 125% predicted! Overinflated lungs (TLC = 98% percentile, 125% predicted), low IC/TLC (30% - < 1% percentile), high resistance (2.5 times upper limit of normal), pre-post BD change of 15.7%, daily peak flow variation of 70% or more: absolutely none of that matters. None of that matters - I'm ""overreacting"" and only have mild asthma since my FEV1 when tested isn't < 80% predicted.
Philomena - good luck with your appointment. Wish I had more to say, but I'm a bit drained right now. (PF was 120 L/m = 25% personal best a half hour ago - just did a neb so I'm a lot better and PF back up to 330=68% PB, but I'm also worn out.)
Thanks everyone! Kayla - hope you feel better soon. AM pretty knackered so not replying in detail but wanted to say thanks.
I'd also understood it was the relationships. My previous cons only ever looked at FEV1 while I know my ratio (FEV1/FVC) can be dodgy. He also seemed to think that if spiro was good it was accurate but if bad it must be technique - did some very odd things also where he stopped me and then wrote in letter I'd only been able to blow out for 2 secs?!
This cons is much better about relationships between numbers but he also keeps saying technique is bad - it may be but would have thought nurse would know that when she's doing it! I did have v low FEF results before which worried cons enough to order HRCT but luckily that was all ok - he said FEF is v sensitive to technique. I get that and am really really glad I didn't have what he was worried about but now wondering if he thinks it's all technique? I am admittedly bad at it when struggling more which does probably mean it looks a bit funny but they never seem to get that it's hard to do if you have trouble breathing!! Though I guess others are better than me tech-wise.
Beth - saw you'd been in A&E fairly recently Hope you improve soon - it's rubbish being knackered like this! I didn't think I was that bad right now but suspect breathing is somehow behind this feeling.
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I am admittedly bad at it when struggling more which does probably mean it looks a bit funny but they never seem to get that it's hard to do if you have trouble breathing!! Though I guess others are better than me tech-wise.
Ah - so very true. I can blow wonderful spirometry when my lungs are behaving. To actually get to six seconds when my lungs are doing badly would require my deliberately ignoring instructions to blow as hard and fast as possible. I can slow exhale for a very long time (10-20secs), but ask me to do it hard and fast and I puff out air like a blown-up paper bag slapped between two hands. Do they really want us to ignore instructions just so it looks right - only to be told of course that we aren't trying hard enough when FEV1 drops because of technique?
From what I understand of the joint ATS/ERS statement on spirometry, it is actually important to do the technique the same way and not to change to a different technique just so the data looks right: the reference equations assume that everyone is using the same technique.
I don't get it. It sometimes seems that they are fudging the numbers/ignoring data to fit expectations. At my last appointment my first attempt blowing into his portable machine must have been nasty low so he redid it. Fair enough. Then when I blew hard/fast, I think I got something higher, but it couldn't have been valid given that FEV1/FVC = 0.99. That means I barely exhaled for more than a second. FEV1 was, I think 96%. When I pointed out that even the better result was well below what he got the first time we met (FEV1 more like 117%) he told me, the change wasn't significant because if we tried a third time I'd probably blow 117% again. But he didn't test his hypothesis. Then he wrote down numbers that made no sense at all - he only wrote down % predicted but when I looked up the equivalent liters the FEV1 was greater than the FVC. Huh?
Beth - saw you'd been in A&E fairly recently Hope you improve soon - it's rubbish being knackered like this! I didn't think I was that bad right now but suspect breathing is somehow behind this feeling.
Yup. Thanks.
I only ever had spiro done when first diagnosed, what have been your triggers for getting it repeated?
Every time I go to clinic I have to do spiro before! And then every so often they want me to do full LF - must have done about 5 of those and it's knackering ugh. When I was in RBH I had to do spiro every day except the day I had full LF.
Just an update as had my appt this morning: it actually went really well - I won't say I wasn't nervous before! Beth - only had one usable spiro reading today according to the nurse and it was the lowest (2.5, best recorded is 3.7). Which to me suggests that it's a bit dodgy what they were doing elsewhere implying the low readings were my technique and high ones real as clearly you can get suspect high ones too.
My PF diary overall seems to have convinced him it is all asthma and that it's not well controlled at all, which is what I was thinking as I really think the breathing pattern thing has improved a lot. I also didn't have any mention this time of overusing inhaler, maybe because my pre-post readings consistently showed significant improvement after taking it. So no mention whatsoever of anxiety or perception or over-treatment; he was saying my seaside holiday had clearly agreed with me, that I was poorly controlled in general and that if someone he'd never met before had shown him everything I did today, he'd decide that they needed pred at about PF 500 and that actually it's better to jump in with pred sooner rather than later, which is also what my current GP thinks.
I asked him about more steroid inhalers and he said I'm pretty maxed out on those and more wouldn't really do much, though if I want to go to 4 puffs of Symbicort twice a day I can, it might help. Debating whether to do that - the pharmacists will have a fit lol as I'll burn through them in just over a week! Otherwise he has a couple of things in mind, though did say given I was on a fair amount already and still not really controlled there were limits to what else is available for 'difficult asthma' (his words not mine). First stop: pred for 4 weeks until I am in high green zone with no or minimal symptoms for at least 3 days in a row. If that doesn't happen with pred, he has Spiriva and azithromycin in mind to try, and explained why antibs work for asthma and not just against infections. IgE was low so no Xolair, relief really. Tree pollen test also negative but he said the tests aren't perfect.
Also checking Vit D and bone density; been prescribed Vit D anyway.
So pretty good on the whole. I went in sort of prepared to argue my case like before but in the end didn't need to at all! Glad he's on same page though slightly scary in a way. I think if it is in fact asthma that's poorly controlled for some reason, as he's now thinking, it's much better to have it acknowledged but for some reason I'm finding it hard to get my head round even though it was a good appt.
Beth and Kayla - how are you doing now? Feeling better I hope.
Glad you had a productive appointment, keeping it all crossed you get better control soon.
Hooray, hands in the air. So happy for you Philomela that the appointment's gone well. It's about time too after so long struggling with poor control.
Hi Philomela,
So glad you had a good appointment and it sounds like you got some useful information about when you need pred etc too.
I thought I was getting better but had a bit of a blip the last few days. Unfortunately I can't be sure that the trial without Spiriva is causing it as I finished pred on Sat and still have a bit of a cold/cough lingering. Children at school now also have a sickness bug so am waiting for that to come my way (knowing my luck it will be at the weekend). Am reluctant to contact GP until appointment next week but may have to if I have another bad night tonight. I was out with a friend and her friend (who is a nurse) last night and started to feel SOB and coughing a lot. The nurse actually wanted to phone at least 111 until I explained that this is a daily occurrence and nothing I worry about (which shows how complacent I am becoming about my asthma not developing into a full blown attack.
Hoping the pred does its trick and you get a bit more control soon.
It's great that someone is finally trying to help you, but I can relate to it being hard to accept a diagnosis, even if it's the one you wre hoping for.
Thanks! Am hoping the pred does the trick too - was sort of hoping he'd try something else first but since it was going well and we were on same page didn't want to be awkward or difficult about it. Hopefully it will decide not to give me predsomnia as it doesn't always...might need a sign or something though, like a t-shirt that says 'warning: I'm a moody cow' lol.
Hope you work something out Kayla and avoid the sickness bug, hate those. I've had some weird flu-like thing the last couple of days though crossed fingers it does seem to be improving as I managed to get to London and back. I definitely think you should contact GP if you get any worse. Like you I get very complacent about not having a bad attack and I definitely got caught out in June!
EDIT: Spookymilo - thanks! I was feeling a bit like it was just ungrateful lol but have to say it's really surprising when a cons agrees with me! I am used to my GP saying it's not controlled and now sometimes the hospital but usually I am locked in an srgument with cons. I am really glad I gave this cons relationship some time to develop - guess you have to know when to fold (as with RBH cons) and when to stay in.
So glad you had a good appointment with cons - finally. About time that you had some ladders and not just snakes. (or chutes - in the US where I grew up the game was called chutes and ladders - it was one of my favorite games!.)
I can relate to your mixed feelings about your cons finally recognizing that you do in fact have uncontrolled asthma. When my GP wrote in my A&E referral letter that I have severe asthma and then a week later in a follow up visit raised the discussion of the emotional impact of having severe asthma, it inwardly threw me into a bit of a tizzy. i had to spend some sit down time with my journal sorting out my feelings. It was nice for a chance to having someone talking about the emotional effect of living with asthma rather than trying to blame the asthma itself on something emotional and pretending I don't really have a problem in the first place to even have an emotional response to. But it also drove home the fact that I've got a real problem that isn't going away and doesn't have easy solution.
Good to hear that there is at least a change in strategy and new things are being tried I hope the pred-to-green strategy works.out
In any case take care of yourself and thanks for updating us.
Philomela, at last a consultant that is working with you! Well done for persevering.
I really hope the pred knocks your asthma on the head once and for all! (I'd quite like a 'moody cow' t shirt for the menopause lol. Although mine is more of a rage!! But fortunately not too often.)
Thanks Beth. Need to update myself on your thread which I've been following so don't feel like you have to repeat yourself - but are you any better?
Yep re emotions - definitely similar! It feels like a big step having an actual consultant say it! Would be anyway I suspect but particularly since I've had so many who are dismissive. I'm not sure he's the person to discuss emotional impact with, but I don't mind - I'm very happy if he's the 'person who listens and fixes stuff' and I can do the immediate advice/emotional stuff with others, though hopefully next time I can get a plan on paper or something. I didn't want to push my luck this time but there was stuff I didn't ask, and vaguely wondering if I could tentatively introduce the topic of 'what to do if I run across ppl who pull the 'not asthma' line as it's frustrating to have experiences like I had in A&E. He has relaxed a bit on the when to get help it seems as has said if on pred and still struggling symptom wise need to go in, so now he's said he'd give pred at a much higher PF I'm kind of assuming that also means he doesn't want me to wait for 50%, though didn't ask.
Re snakes: a little-known sequel to Snakes on a Plane: Snakes in a Respiratory Clinic? I think attending clinic would be much more fun if Samuel L. Jackson were there kicking ass
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Hope you improve soon - it's rubbish being knackered like this! I didn't think I was that bad right now but suspect breathing is somehow behind this feeling. 
rant for a change? lol and advice
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