confused, frustrated

[TGreaves]

I just got out of hospital 2 days ago after a 3 week stay and my last hosp admission was in August before this for 2 weeks ist time ice admission 2nd time icu informed and visited on ward so i was rather sick I came home early as difficulties with one of my children but i feel so drained, emotional , still needing ventolin regularly despite been on max treatment. Im concerned i still havent got grips with it. They say I have severe brittle Asthma and ??? vcd too, due to hoarseness of voice but i think that more down to all steroid inhalers i was taking, I had investigations a yr ago re VCD and all was clear. I so confused n frustarated my family life is complexed as i have two children with additional news work full time though off on sick leave at min etc. They say my triggers are pollen, Stress, ? Animal dander, cold weather I know aerosols and chemicals also can set me off too. How long does it normally take to recover. I am currently on 60mg oral prednsolone, seretide 2000 daily, montelukast, im on fexofenidine for allefies also a nasal spray for rhinitis, salbutamol 2 puffs x 4 daily and then as when needed, i now on bone meds and calcium tabs. they just stopped flixotide as seretide now at max level. Iam new to having it so severe. i ad as a child but mild but seems to have got worse the past 4- 5 yrs. in the past 2 years i have had 4 -5 admissions and close monitoring with gp practice last too so severe almost didnt make it. any advice would be handy. also they suggested a spirometry test again ? is this normal despite having all tests done previously? Sorry for all the questions, but feeling a tad down n coming to terms with adjusting to kife back home after being so ill

[TGreaves]

what i meant to ask have any of you experienced anything similar and are my feelings normal , this is rather scary for me esp not being able to dress or shower without starting off an attack

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It would be normal to have lots of tests with any worsening of symptoms, it would be really easy for doctors to assume tis all down to worsening of asthma but if they found there was something else going on (bronchiectasis, aspergillus, infection etc) then that could be treated or managed and thus reduce the resp symptoms you're getting. Spiro is also helpful to show how significant any worsening is, doctors like having objective measurements to show symptom worseining as they feel more able to treat and measure the effectivness of any treatment! I assume you're under a consultant? If not you should be. It may be the case that there are other things you can try (different inhalers, i really noticed the difference when i switched from seretide to fostair, i think the particles are smaller so get deeper and the LABA is faster acting, differnent antihistamines, some people find fexo better, others citirizine, i find antihistamines work best for me when i use more than one at once, uniphlline, atrovent, home nebs, domperidone made a huge difference for me and curiouser (another AUKer) as we both were trigges by a type of reflux, so there are many different things to try, even some more extremem things like sub-cut drugs, Sparkley (an AUKer has just started sub-cut, there is a thread about her long admission called long admission diary), Xolair for allergicy asthma) there are loads of things to try and so it seems a shame to be so very symptomatic unless you've tried everything!! Id discuss what your cons feels the next steps are and whilst any changes will take a while, and the journey is very frustrating, it is worth it in the long run!!

I assumed a planned admission would be impossible for you with the kids?? thats something a lot of people are asked to do!

Have you ever had resp physio? that can really help some people, i think philomela had some good experiences. Asthmatics often compensate for difficult breathing for so long that breathing patterns can become dysfunctional leading to more frequent difficulties. Physio can also help with VCD if they think that is a contributing factor.

I think its normal to be a bit scared! you been back to GP to specifically discuss emotional stuff. Sometimes my GP will book two appts the day after each other, and the first one is specifically focused on my mental wellbeing, he likes to see me at least once a fortnight, but so often are appts are taken up with physical health that the mental health side of things gets overlooked.

Dressing and showering are necessary sadly, but you may find, for example that having weekends where you just slug about do you good as it gives your lungs a bit o a break! I also find cool-ish baths are easier for me, as i can sit, and take my time and i even sometimes listen to the radio or watch a film in the bath so that i can really take my time and my lungs find it easier. there have even been times when i have made sure the bathroom is nice and warm and I have let myself drip-dry to save towel effort. If you try for a few days to really sofa-surf that might give your lungs a bit of a break, ready meals, PJs, someone to wash your hair in the sink, all make a big difference. Lots of salbutamol at early symptoms, and pre-emptive treating with salb can all help. dont be afraid to go to GP (perhaps booking a double appt) with a list of concerns, it can even help just to have someone to discuss this with. Making sure the people involved with your care know you are struggling can make everyone a bit more pro-active!

hope that helps!! sending lots of hugs!!

[TGreaves]

Thank you my meds have all been changes i on max dosage , i cant have xolair as my allergy levels werent high enough though there was talk of changing montelukast to the tablet form of ameliphene or whatever it called i had it via iv. Im so brittle and end up in icu each time. the drs are deeply concerned. I have no infections just severe brittle asthma, they say my main triggers are allergies and stress, as well as usual aerosols, chemicals, smoke etc etc. but it is so hard to come to terms with things im monitoring peak flows n salbutamol intake, im not allowed home nebs as im so severe they say if i need nebs i need hosp incase i head back to ICU. I see my consultant again on monday to check i coping ok at home. i have respiratory outreach nurses coming to my home for a month. but it allso daunting. /never felt so ill n down

[TGreaves]

Also like i read earlier i too was asked to see health psychologist to help with acceptance of seriousness of my condition , and to help with management coping strategies, i find it useless to be fair only did one session not willing for another. x but i felt i had to jump through hoops to please drs to show i was wiling to be in control of my asthma despite being scared out of my mind x

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what are you allergic to? Is there any way for you to limit exposure - limiting exposure to triggers is such a huge part in asthma care. I found a huuge improvement in severity and frequency of symptoms when i was treated for non-acid reflux. I know nursefurby had a similar thing with acid-reflux (i think), and there are many other people who do get massive improvements when a new trigger is established! have you had a PH study? I assume you have had chest CTs?

there are lots of things you can be doing to help the stress side of things, if its relatively mild you could try simple things, relaxation techniques, even watching a light-hearted film, writing out whatever is worrying/stressing you, that kind of stuff. if its more sgnificant you could try things like talking therapies or CBT (although some psychologists are wary of asthmatics as a lot of their techniques involve panic-induction which isnt great for resp patients!!) or even some anti-anxiety meds can make a huge difference if appropriate!

chemical triggers are tough, most of it is common sense, neutral washing powders, and soaps/shampoos etc, roll on deoderants, no hair sprays, that kind of thing, pretty basic stuff i am sure you already do!

I never got on with the majority of health psychologists, I have spoken to a few amazing ones, who understood that some anxiety about the condition is normal, and that the condition triggers the anxiety, not the other way around, but they are hard to come by (in my experience at least) i much prefer to get support from my 'usual' people, GPs and nurses in my practice, who have been completely fantastic with me

It is really tough! do you have many bits n bobs you can do to keep yourself busy. I make a lot of things when my breathing is bad, or do puzzles, things that keep my mind occupied without me moving - if you cant think of things let me know, i have loads of fun things to learn to do/make

do you have lots of family and friends around? doing takeaway and a movie can be soooo helpful when you are feeling down and stressed ad overwhelmed! i seriously think it should be provided on the NHS!!

[TGreaves]

Hi there yes i have reduced triggers such as aerosols where possible n cleaning products i have adapted etc, The stresses i face arent the usual typical anxietites i have two special needs children and i work full time so it a diff type of life stress where writing things down aint gonna work n watching light hearted films dont happen as my youngest dont settle im always on the go. i wont be seeing any health psycholgists again i find them useless for my situation i know my case severe i know i should seek help sooner. I tiried explaining caring for special needs children is difficult and unless u live the life you will never understand, and to us it is the norm. however i will be getting respite so that a step in right direction. I dont get anxious unless i in a serious attack which i left too long for treatment if that makes senses. I adapting to homelife again i sstill proving a battle, but that cos my head saying i can do but my body is slamming brakes on lol x My hubby also goes away alot with work and due to go soon to so that another stress in itself as some want to postpone but because i so brittle n severe there are never any guarantees when wor where it will happen. I have had xrays i had tests done previously, ive had resp nurses come n check peak flow techniques n inhaler techniques. I just get frustrated so much as used to being very busy in life esp in my work too. I have had one allergy test done which flagged up timmy grass, birch trees, the dr put me on nasal steroid spray also for dust mtes and animal dander. there was talk re furhter tests for moulds etc but nothing else been said as yet. I back at consultant tomorrow i just feel i trying to prove all time. we lived in netherlands for 4 years again due to work so all my stuff been done there and we dont have a lot of paper evidence unfortunately which is frustrating. but ty for the tips im starting to feel normal again in some of what im feeling next step to be able to dress and shower without triggerring an attack.