Asthma ruling my life: I'm so sorry... - Asthma UK communi...

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Asthma ruling my life

Erin001 profile image

I'm so sorry about this post but I needed to rant

I have brittle asthma and have had so many issues over the winter I was admitted to hospital on Friday and was discharged yesterday afternoon and two weeks before that I had was in hospital with the same problem asthma and I was also in A&E on Boxing Day night too due to asthma and things are coming to a halt due to asthma

My mum got me tickets to see crufts that got cancelled due to it being too risky and I'm a 17 year old college student who with the asthma attack two weeks ago meant an assignment was handed in late cos I was in hospital

My asthma is controlling my life and I'm already under a specialist been under specialists for a year and it's not getting better it's getting worse

I'm struggling to walk up stairs and walking from a to b without getting out of breath. However the amount of nebs I had in the hospital has kept my wheezing so far at bay and walking very short distances is fine but haven't tried going out yet since being discharged but will be tomorrow due to college which is on my mind of how I'm gonna cope with stairs and going to next lesson etc. but I'm not staying off because I've got to try it I can't give up.

I've had enough and I know mine isn't as bad as others and could be worse and to those who have really bad asthma I admire you because how do you cope or put up with the constant trouble asthma brings you

Sorry again thank you for putting up with this rant x

11 Replies

No wonder you need to rant. Im sorry you are having such a hard time. It’s a horrible feeling when your life is controlled by asthma.

I feel like this too specially when I’m not well. I wish I could say something positive but all I can think of is I’m thinking of you, hoping you improve. Don’t push yourself, health is too important. Sending gentle hugs xxx

I sure you are entitled to rant, all I can add is hang in there, in the hope a remedy is near.

Lysistrata profile image
LysistrataCommunity Ambassador

Hi, I agree that sounds frustrating - I also hsve asthma that messes with things a lot.

I do wonder who you're seeing at the hospital? Is it a general respiratory clinic? They don't always know so much about asthma as I have discovered and may see very few severe asthmatics. As you have been under them for a while with no improvement it might be worth asking your GP or consultant for a referral to a specialist asthma centre, where they have access to more specialist tests and treatment.

I'm not sure where you're based but they have these centres across the country - 3 in London (Brompton which is great for some but I didn't get on with), Guy's (where I go) and UCH, one in Oxford, Papworth, Southampton, Wythenshawe, Heartlands and probably others.

Erin001 profile image
Erin001 in reply to Lysistrata

I have 2 specialist asthma nurses and a respiratory consultant in a hospital

I'm gonna get in contact with them on Monday because they don't work on weekends so won't see any of my messages

Thx for support

Thx all for the support this website has some truly lovely people who are so understanding I always feel bad for moaning because I know there is always someone having a worse day than me but having this support certainly helps make me feel heard and looked after x

EmmaF91 profile image
EmmaF91Community Ambassador

Hi Erin

Sorry to hear how tough a time you are having at the moment! Feel free to rant away - it’s a good form of therapy!

Coming from someone who’s been in a similar position have you spoken to your college about any extra support they can give you, or even doing self-study at home until your more stable?

Under disability discrimination/awareness they should have systems in place to support you, both academically and physically, so if they are aware of the situation, see if they can do anything to help you... if you can’t do stairs are there lifts, or can they relocate your lessons to a ground floor room etc... Assignment wise you should get mitigating circumstances for any missing/late coursework, all you’ll need is evidence in the form of a doctor/hospital letter.

Personally my uni messed up and screwed me over until last year when I had to go to panel and point out everything they were doing wrong esp as they had ignored me for 2 years... now if I’m bad they pay for a taxi for me to get in, instead of walking 500m uphill and we’ve now worked out a way to avoid certain rooms (very dusty/top floor/in a different building) without me missing anything. I now also have a blue badge so when I’m bad I can still go out and pretend to have a social life... if you haven’t already it may be worth considering applying for one, they’re dead useful if you need to go shopping but can’t walk for long outside without having attacks.

It sucks to miss out on life and going out with your friends especially when you’re so young, so maybe try organising nights in with a few friends when you’re feeling more up to it. But don’t forget to allow yourself recovery time after attacks, as pushing it can lead you back to starting it all over again (again something I know from experience!).

Have you had a recent med review? It might be something to chase up with your resp team, trying different medications to see if you can gain back some control (although I don’t know where you fall on the range of brittle, as this SoB may be something that’s normal for you and you’ve just had a flare up, or something really abnormal after a period of good control). Are you at a tertiary centre (respiratory specialist hospital), and if so are you able to make an appt to see them? If not see if you’re local will refer you if this flare up doesn’t calm down!

Just remember you are not alone in this, and there are people here to lend a listening ear and a few words of support (from someone who has ranted a few times on here I know how much it can help!). Keep warm and your blue on you just in case! Thinking of you and hope that things soon sort themselves out and that things can get put in to place to support you at college

Emma x

Erin001 profile image
Erin001 in reply to EmmaF91

There is a lift to the upper floor places but I rather not (I don't want to be special or singled out I just want to be like everyone else so I'd rather walk up the stairs cos their isn't many stairs ) just majority of my lessons are in several different buildings and are quite spread out so I'm having to go outside every hour meaning the change in temperature from a warmish room to the cold outside or just walking may get me out of breath but not necessarily enough to cause the need of inhaler just makes me feel like I'm 90

And I rather go to college due to the fact I work better there than at home and I want to go into to see my friends

Im going to college tomorrow because I feel the longer I leave it the harder it will get I rather just get that hurdle over and done with and besides no one will be home to keep an eye on me so being at college is safer

The resp team upped my meds the other week due to the fact I had an asthma attack two weeks ago

And no I don't go to resp centre just a local hospital where I go and see them I know there is one somewhere in London but it would be really expensive to get there due to the fact my mum doesn't drive and I don't want her to take any more time off than she has too because too much time off could cost her her job and we haven't exactly got the money to do that and it is just me and mum so no one else could bring in the income

Do you have an idea what the resp hospital in London is called so I can research it and talk to my team about it maybe ? I know I said I can't afford it but if i need I need it

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Erin001

I completely understand where you’re coming from, just make sure to take the time to look after your lungs! I have also sometimes felt safer being in uni than at home as I’d be home alone and don’t drive... most my hospital trips are via bus, because that’s quicker for me than getting an ambulance out! I’d still advise speaking to someone at college (a lecturer or someone you’re comfortable with) Just so that they can understand what you’re dealing with!

I don’t know where you live, but there are many resp hospitals about, not just in London, and free patient transport to and from can be organised if you can’t get there yourself! Mine is in London and I have to get the train in each time, which can be expensive so I’m having to factor the cost in to my living expenses, but the benefits of being there outweigh the costs in my opinion! However you may not be at the point where that’s what you need to be... local hospitals have a few options to go through before they’ll send you to one!

Hope you get sorted out soon x

Erin001 profile image
Erin001 in reply to EmmaF91

I have emailed my tutors to make them aware and i will ask to check whether they've seen the message

I think London would be the closest ones to me and I to be honest I don't think I'm at that stage yet I will just have to wait and see what my team say on what to do

I just can't wait for the summer where usually my lungs get soo much better and I hope that's true for this year

Thank you very much for the support and advice hope uni is going well for you may I ask (outside of med conversation) what your studying and where just out of interest ?? If you rather pm me please do so

Hi Eric, rant away. I can totally understand where you frustration is coming from, as I'm in a not dissimilar situation. I'm trying to set up a charity for individuals with a neurological condition, and every time I try to do something my asthma kicks in, along with chest infections. I have now been in hospital 9 times since September, four of those this year.

Thinking of you.

Literally in the same position except I don’t get attack’s i have a constant lung inflammation so going to brompton and it’ll probs be diagnosed as a chronic lung deseas, had asthma all my life but as I got older it seems to of developed into something worse, been off work for like 2 months now literally puts you in the darkest place don’t it

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