Stuck in a rut

Hi,

I haven't been around in a little while, and sorry in advance for the mammoth post, but I could just use a place to rant!

I am currently suffering with my longest exacerbation of asthma - I am into my fourth month and it still shows no signs of getting better. I have recently been referred to a consultant at the hospital, had my first appointment with him which I came out of with mixed emotions - on the one hand, I was relieved that I was being taken seriously, but on the other hand disheartened because I still have no idea how long it will take before I am feeling well again! I know it is probably very difficult to predict with this sort of thing, but I hate the uncertainty.

I had a blood test done to check for allergies, and he is looking into my cough because he thinks there is something else causing that, rather than just asthma (I've been coughing constantly since I was 6 despite being on high doses of preventer inhalers from the age of 15 - I'm 19 now). He also changed my doses of inhalers, but two weeks into this I'm not really feeling any different. I have another appointment in two weeks, but I'm not really sure what to expect again...I just want to start feeling better!

I am pretty much housebound - can't go out on my own and start coughing and wheezing the minute I'm walking around outside, particularly when it's cold. I feel tight chested pretty much all day, even if I just stay on the sofa! Night time symptoms are not so bad now, but still there. I am supposed to be in my first year of music college, but my lungs are refusing to play oboe at the moment, so chances are I'll have to drop out and hopefully start again in September! I am trying to stay positive, but it's difficult when this is the first time I have really experienced asthma as severe as this, to the point where it's really stopping me from going about my daily life. I am going crazy with boredom, but can't get out and do much because I'm exhausted most of the time.

I have never experienced asthma like this, but at the same time I know there are people out there who have it much worse than I do. I keep thinking positive, and telling myself that it WILL get better, but it's hard to stay positive when there's just no let up from symptoms.

Sorry for the huge rant, I just had to get that out of my system! Hope this cold weather goes away soon, it's really inconsiderate to us asthmatics!

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Ugh. This sounds a lot like my last three and a half months, although right now I'm going through a relatively good patch, though not perfect. It is soooo frustrating not to know when it will all get better. I also struggle with staying positive - especially when a good stretch falls backwards.

Feel free to rant away.

I hope you feel better soon. But even if this sticks around for a while (I hope it doesn't) sooner or later I imagine you'll figure out a way in spite of it all, to get on with something in your life that matters to you. I'm increasing realizing that it is really important to have a larger purpose to focus on other than just managing/surviving the asthma.

Obviously playing the oboe can't be it right now, but perhaps something else? Do you compose? Perhaps you could think up a project that you can work on bit by bit in the good moments?

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I know EXACTLY how you feel. i could practically have written that myself! (apart from the oboe bit) I knew it was never going to happen but i did walk into the consultants office hoping he was going to tell me exactly what we would try next, exactly how each one would make me feel and an accurate date when i would feel normal again. I have just been back to hospital after finally getting my pred down to 10mg, so going to ring m GP tommoz and beg not to make me increase again. I was finally starting to feel like an actual human (a wheezy one, but not some walking zombie at least) I feel like i cant do anything i want to, and like you, i have just started uni, this is supposed to be the start of my new independant life and instead i feel trapped and lonely and useless, and waaaay out of my depths with what i am supposed to be able to deal with. I find thinking 'other people are worse than me' actually makes me feel worse - you feel rubbish and thats all that matters, you get to have a rant and a moan and you are allowed to have times when you feel overwhelmed. thats ok! and i think you need to remember that sometimes - i certainly do! I just went round to my mates house for a good cry, i had been three weeks w/o hospital and even though i knew i was deteriorating, and have been for a few days, i really thought i might be able to avoid A&E, silly, i know, but i cant help what my brain expects! I cant really offer you any advice, just a 'i'm here with you, you aren't alone' I find i often feel so isolated by this condition, and that only makes matters worse, stress and asthma are unfortunately a bit of a vicious cycle! Hope you are feeling better soon, and even if you're lungs aren't improving I know I am in urgent need of a movie night with the girls, and popcorn, and pizza! Get them to come to you and you can happily wheeze away a fun evening on the sofa! hugs!

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Sorry to hear youre struggling so much (and soph).

It is emotionally very difficult when ones health deteriorates from good to bad and this is regardless of how good or how bad your personal lot is or any comparison to others. All you know in the immediate aftermath is that you need to cope with a life that got a lot more difficult.

As Beth has said I agree that if its a long period of rubbish health its a good idea to look around for what activity you can do and enjoy even though to begin with your life seems to be turned upside down.

Huge hugs and hoping you feel better soon. Take care and pamper yourself!

Rose xx

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I've learnt to not expect anything in particular from consultants appointments. I've expected many times to have answers to my questions like how long will it take to improve, what will i feel like on this drug, how long will it take to work, will it stop attacks being so bad, will i be able to do this or that, etc. They just don't really have the answers as everyone's different. So, if the appointment goes well or if things improve in my asthma I just take it as a bonus.

It's a hard thing to get your head around, not knowing what your asthma will be like in the future, and day to day too, when all you want is to be better and living a normal life, and i still don't think I've got my head around it really. It's incredibly frustrating to be attached to the sofa for days and weeks on end, but it's something that we have to ride out and along the way ask for all the help and support that we need to make it as comfortable as possible, and find some alternative things to do to lessen the boredom and frustration.

I hope you can make some progress soon towards ending this exacerbation, but in the meantime, big hugs. Same for everyone struggling, hugs to you all.

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Thank you all for the lovely replies

Beth - you're absolutely right that having something to focus on can make this all a bit easier! Unfortunately I don't compose but I do tinker around on the piano, though I find that can make me miss my oboe even more. I used to enjoy writing so I am getting back into that, which at least is something I enjoy that occupies my time - it's just incredibly frustrating when I have worked so hard to get to music college, only to be stopped by this!

Soph - thanks so much for the sympathy! I'm sorry you're having such a hard time too Your situation does sound very similar - I find the hardest thing is that just as I was ready to start life independently doing what I love and have worked so hard for, I am unable to do it due to something completely outside my control. A movie night is very much needed, like you say!

Rose - thanks for saying that it is hard whenever you get worse, even if you're not as bad as others. I have the attitude sometimes where I think 'what am I complaining about, it's not as if I am the sickest person in the world' - but I have to accept that I am actually sick! For me it is tough because as a child I was completely healthy, only started having asthma attacks at 13 and they weren't serious until I was 17, and I've never been as ill as I am now before. Thank you for the hugs!

Lou - interesting about the consultant appointments - I think I have definitely had unrealistic expectations! I was just hoping to go in there and get all the answers, when in reality I guess no one really knows! I have just heard I've got a CT scan booked for march as well, so he is testing thoroughly at any rate. You're right that it is hard to come to terms with suddenly being stuck indoors! I am staying at home with my parents for a bit, to get looked after no one else I know has asthma though so I do feel a bit like the odd one out!

Thank you again for the support, it's lovely to have a place to come and vent to people who understand I hope those struggling keep getting better! Hugs xx

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Hey Musicgeek :0)

I'm in exactly the same situation at the moment, minus the oboe, but plus a husband and an energetic 15 month old! I also had the allergy tests on Tuesday and I'm waiting for a CT scan appointment too. It is miserable and sometimes you just need to be able to rant. It's hard to know whether to feel pleased or not about finally seeing a specialist when all you want are answers that they just don't seem to be able to give you. I guess it sounds as if they're being quite thorough though or at least taking things in some sort of direction. If it cheers you up even a tiny amount then I had to try and stop myself laughing when I met my specialist the other day - he looks like and has the mannerisms of 'South Park' Saddam Hussain! Sorry if that's an inappropriate joke, but you have to get your kicks where you can when your asthma is this rough!

Natalie x

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Natalie sorry to hear youre also struggling at the mo. Hoping you both get somanswers or a more certain direction to go in with the scans and cons although i agree i have often put too much faith in cons appointments because they really cant radically change things from one week to the next. Especially at the beginni.g of a referral as they need to do all the tests and try out various treatments before hitting on the correct cocktail for you. Hoping you see some improvment soo Take care.

Rose xx