Haven’t been on here for quite a while but after 3 bad attacks in the space of a week, I’m really struggling. My asthma was also bad during the night last night which is unusual for me.
I’m on all the meds I can be and was sent home with pred so not sure there’s anything else that can really be done medication wise. I’m just in a lot of pain from my ribs and pred can be great but by god it can also really mess with your head! I’m feeling delicate anyway but it’s turning me into some crying psycho horrible person!
On a positive note though, my respiratory clinic work with a psychologist at another local hospital who specialises in asthma and long term health conditions. They told me they realise it’s not all about meds and that living with a long term health condition can affect your mental well being, hallelujah! Good to see they take the holistic view. I find, like I’m finding at the moment, that after a bad flare up it’s the mental and emotional side effects that are harder to shift. Plus I think just having someone to talk through all the, ‘do you know how much of an impact your asthma has on the rest of us?’ ‘I could’ve done without coming to A&E with you today’ comments will be a big help!!!!
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RD23
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I can't offer anything useful but just massive sympathy! I also turn into the crying psycho esp after bad encounters with drs. I hope the psychologist is helpful - I saw one in my clinic and it was great because she wasn't trying to bang on about how I must have anxiety about breathing, and actually acknowledged that I'd had some bad experiences with medics and that they were completely inappropriate in saying/doing what they did and that yes, it is hard to deal with all this and to be weird on top (I know you have the same issue with being a bit of a unicorn!)
It was really good to be able to talk it through without feeling like I was a burden (because although I do have supportive friends I feel bad offloading too much when they have their own things going on too!). It does sound like you don't have the most supportive ppl around you at the moment - those are pretty horrible comments tbh. I'm sure your asthma has more impact on you and you didn't want to go to A&E either! And if you're anything like me you already feel guilty about the impact it has on others and don't need that pointed out all the time.
Hope you feel less horrible soon. Is there any prospect of a tertiary referral, as I know you said your local cons was struggling to think of anything else?
Thank you! I’m really hoping the psychologist can help and yes, being a bit of a unicorn you can sometimes feel like you’ve been left to get in with it!
Generally the people around me are supportive, I just think sometimes they have a lot of other things going on and it just comes out as frustration. I do point out though that having an asthma attack and ended up in a&e doesn’t exactly feature on my top ten list of things to do with your day!
My consultant has left so I’m waiting to be referred to a new one but I will definitely look into it as I’m not sure how much faith I place in the clinics anymore! Last time I went, a few weeks ago, I tried twice to do my spirometery test and couldn’t and the nurse I saw didn’t suggest anything I could do or seem to be that worried about it! 🤦🏻♀️
Hi RD23. I really can sympathise with your situation. In June I was having attack after attack (3 severe and numerous moderate). I was afraid to move in case it triggered any other attack I was shaking most of the time. For a very long time my asthma had been mild, just a low dose of inhaled steroids and a wheeze now and then. Over the last month or so before the attacks, I had been taking my blue a little more than usual but thought nothing of it. This was a massive shock. Nothing was helping. I saw a specialist privately and he thought it was sinusitis. I’m now stable with Seretide and other meds. Emotionally after 2 months clear I am still struggling and fearing another attack. It’s just awful. I’m still a bit wheezy but it is becoming less troublesome and the salbutamol is working much better. It’s a struggle just to get up in the mornings and not eating is my big issue at the moment but I am slowly working through it. Asthma is not an easy condition physically and mentally. It can flare at anytime even in the mildest of cases. You are strong and doing a great job!
Thank you and you are too! I don’t think people realise how scary it can be and that once you’ve had a series of bad attacks, it does make you scared of having another one as it’s a hell of a lot to put your body and mind through.
I’m glad it’s stabilised for you now as it must have been a shock for you. We’re all always here if you need to chat, sometimes it helps so much having people here who know exactly what you’re going through. Xxx
Sorry to hear you’ve not been well and from the sounds of it you’re not getting the best support from fam/friends either. It’s not like you can help it/want it, nor is it a walk in the park for you! I bet you also could have done without the trip in! Would they say these things if you had cancer or unstable diabetes type 1??? I think not (tho I do hear horror stories from said suffers so hopefully it’s just less common🤞🏻)!
I know you’ve said you’re on all the meds you can be on, but not knowing where you’re at care wise just checking you have actually tried them all (cause lots don’t get offered by docs cause they don’t like them). So home med wise, montelukast, theophylline/aminophylline, 2nd preventer and separate LABA, carbocisteine (if you’re particularly mucusy), strong antihistamine/spray is allergy (fexofenadine 180, avamys/dymista, nasal drops), reflux meds incase that’s a trigger etc etc etc. Are you under tertiary and have they looked at biologicals if you’re eligible etc? I know sometimes you hit a wall with meds and it’s cause you need passing up the system but you’re just told ‘nothing more we can do’. Please ignore me tho if you are on everything 😅.
If you’re still at local level definitely worth asking for tertiary referral, esp if you’re getting to the maintenance steroid stage! (You have my sympathy for the pred head!)
The psychologist should really help you work through all the hang ups we develop with this condition cause yes it really is normal and no it’s not you! Glad you’ve got it available to you!
Keep fighting and getting help when you need it, no matter what people say. It’s your life on the line not theirs! Thinking of you and hopefully things will calm for you soon! You are not alone
Again I can’t really say much that hasn’t already been said apart from I’m so sorry you’re struggling so much and that you’re not getting as much support as you need! 😞
I know it’s easier said than done but you shouldn’t ever feel guilty for going to get the treatment you need - it’s not like it’s a fun experience!
I hope you get to see the psychologist soon and that they can really help talk through everything 😊
Thank you. Generally they’re great but yes, the odd placed comments hurt, especially as in the kind of person who hates inconveniencing anyone in the slightest but like you say, there’s nothing I can do about it so shouldn’t feel guilty xxx
Oddly, I rarely get chest infections which makes no sense! Stress is my biggest trigger, followed by hormones. Changes in temperature set it off, mould, dust mites, pollen, deodorant and body sprays, all the usual culprits! I think with my asthma, it’s never just one thing, it’s almost as if it’s layers on a cake or a pressure cooker and then it just goes, ‘right I’ve had enough’ and I get an attack. Does that make any kind of sense? 😂
Yes, it does make sense. It's like a jug and when it's full, it starts to overflow.
As it sounds like it is very much allergy related working on your immune system might help. Are you taking antihistamines or anything to lessen your response to the allergies? Stress tends to interfere with our breathing so looking at the buteyko method of breathing or other breathing techniques may help. Trying to build your health up may also strengthen you so your body can cope with more.
I had a vitamin C intravenous injection at one stage but I had a severe chest infection at the time so that may not work with you. Wishing you the best.
No worries, I’ll have a look into the different techniques and see if they can refer me back to the respiratory physiotherapist to try and help with these.
I’ve got quite a healthy diet and eat plenty of fruit and veg and drink plenty of water. I don’t exercise as much as I would like to but I find that just as I get my fitness levels back on track, my asthma flares up again! It does all feel like a juggling act sometimes xxx
Yep. I feel your pain. Every time I try to improve my health something happens - usually it's a chest infection or flu. However at the moment I have Psoriatic arthritis so every time I do too much by joints swell up. However I am managing it and getting better..... and I think that my friends finally understand that doing too much exercise does make me worse, not better.
Thank you. I feel really mean as generally they’re great, but sometimes the comments really get to me as no one gets more frustrated with my asthma than me, but there’s very little, other than what I already do, that I can do about it. If I forgot to take my meds and didn’t do anything to help myself, then yes, I could understand their frustration somewhat but I think I manage it pretty damn well so it’s a little hurtful.
Meds wise I’m on:
•Relvar Ellipta 184/22 mcg, one puff in a morning.
•ciclesonside one puff in a morning but can be increased to two if symptoms are worse and also depending where I am in my cycle (my hormones set my asthma off)
• antihistamines- one in a morning and one at night to manage my allergies. (When I’m stressed, run down or my immune system’s low my body produces too much histamine and attacks itself)
•mucodyne capsules- 2 in a morning and two at night
•montelukast- one at night
•spiriva respimat- 2 puffs at night
I also take a nasal spray every morning for my allergic rhinitis- basically my body doesn’t work 😂😂😂
I was given pred from the hospital but I don’t follow a traditional plan as my peak flow only ever drops when I’m actually having an attack so a ‘normal’ asthma plan doesn’t work for me.
Basically, if I could purchase a new windpipe on eBay, I’d be trading this one in as it’s doing my head in! 😂 not that anyone would want my knackered windpipe!
PF is a really tricky thing. I had an attack and called my GP surgery once I was stable and got in to see the dr. straight away. He did a PF and said “oh your fine, your at 92%.” (Turns our after seeing a specialist my PB was a lot higher than my GP claimed) The GP wanted to treat me for anxiety not asthma! I was actually at 82% after 7 shots of salbutamol, so without I was a lot lower. Your GP or A&E dr. will see you probably after a lot of salbutamol. It doesn’t tell the whole story. I’ve started go armed to my GP with print offs from Asthma UK. I do have a GP at my practice who is great and takes asthma VERY seriously whatever is going on. She said if I’m having problems in any way and not in immediate danger, I should get an emergency appointment. Getting to see her is however pot luck.
Peak flow is so tricky and they seems to be so obsessed with that and your stats ( mine never drop) that they don’t actually treat you as how you are presenting, just as a bunch of numbers! It always makes me laugh that they make you do your peak flow at a&e before they’ll let you go and amazed when it’s so high, well yes, you’ve just pumped me full of drugs!
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