i've just clocked up my 6th ITU visit this year.. ( not counting the HDU and other hospital trips) and have spent quite a bit of time on a ventilator.
well lets just say, the ITU registrars, call me 'sweetie' now.
and i'm having a very very teenage girl meltdown.
is it me, or is having severe asthma like being radioactive... i mean the the only guys who want to talk to me now are in scrubs and brandishing stethoscopes....or worse ABG needles
(and its not nearly as flattering as being chatted up in a bar)
i understand that i will always have more arterial lines than boyfriends, but it seems that as soon as a guy finds out that your in and out hospital like a yo-yo they seem to run in the opposite direction faster than a blue light ambulance. and its quite hard to keep the fact that i average an ITU admission per month a secret.
i mean i know its a lot to deal with and its a lot to ask some one to deal with and its probably not fair to ask some one to deal with it...but i kind of want some one to be okay with the fact that i take more medication than their grandmother and doesnt mind that my wrists are mangled from serial ABG's and arterial lines.
the fact that my health has been a deal breaker for every single relationship i've had is starting to get me a little down, as its either obsessed over, completely ignored, or when it comes to light that my asthma is a little more than a blue inhaler (like 20 tablets a day 5 different kinds of inhaler, need a ventilator kind of asthma) they run in the opposite direction as fast as they can.
i suppose its also the fact that i cant live like every other 18 year old, as you cant exactly go out clubbing and puff away on your bricanyl/ventolin, i'm also often cyanotic of a night time and take theophylline so i cant drink alcohol.
anyway apologies for the waffling
so how does your other half deal with you 'not being well' and how did you survive the teenage years?
I think a lot of people on here will be able to sympathise with you about this- and it is perfectly fine to have a bit of meltdown about these things once in a while. I don't think the pm service is back in action yet (I might be wrong though) so apologies if this turns into a bit of an essay that's pretty boring for everyone else.
Let's start with the positive. Lots of people with severe forms of asthma are in very happy relationships. I am ten years older than you and I am sure that seems a lifetime away for you but despite having asthma that is still a complete pain at times I am living with my boyfriend and we mananage to cope with my spells in hospital (including ITU) relatively well now I think. The key word there is now. It hasn't been easy, with him or in my previous relationships/dating adventures. Some guys will just not think it is a big deal in the sense that they have absolutely no concept of the severity of asthma. This can be problematic as they don't understand your limitations and think you are making a big fuss over something trivial. Perhaps worse (in my experience) is those that completely freak out about it. Either then they will do a runner or go into panic mode everytime you cough or wheeze slightly (which lets face it can be a lot of the time). My current boyfriend walked out on me a few days after a pretty unpleasant and lengthy admission a couple of years ago. I think it was all too much for him and he had other things in life that he needed to and wanted to focus on. It was really painful for me as we had been together for a long time but actually I think my friends and family were angrier about it than me as I could understand why he would want to escape the constant admissions and sleepness nights. Going back to the positive though I think that having time apart made us both realise that a) we hadn't been dealing with it properly and b) that we really wanted to be together. So after accidentally bumped into each other 10 months later (actually while I was pretty sick in resus) we've been together ever since. It's tough but it is possible. The main things I would advise that you can do to make it easier for guys not to be scared off are to make sure you have good support from your friends and family. Let the guy know that you like having them around but that you aren't actually becoming dependent on them and that you have other people that can look after you. Also be very prompt about getting yourself some help as soon as you feel ill (I know this is key advise anyway but what I mean is don't repeatedly put them in a position of unfair responsibility/ scare them silly by delaying getting help and then having a massive attack in front of them and forcing them to step in and save the day). Now when I start to feel unwell (and I can deterioate stupidly quickly) I get myself straight to hospital and then text my boyfriend to say I'm there. I always walk into A&E feeling embarrassed as its 'just a bit of a wheeze' but they know me and want me there asap. In return for me being mature and getting looked at early my boyfriend is then much more supportive. I don't need him there at that point, I am fine by myself but then if (or really when) I start to go downhill then the hospital phone him and he is straight there and in fact now it is difficult to get him to leave my side when I am in ITU. When I am discharged I often go to stay at either my parents or his parents so that it is not too much of a strain for him as he works long hours and it is stressful for both of us for me to be left in the flat all day immediately after getting out from hospital.
Also, the longer you manage to have in between admissions the easier it is. I did a year of being in hospital for about one week out of every month and that wasn't great dating wise, not impossible though! Good luck and stay positive
Oh, and yes I have tried and often failed at clubbing before. There is nothing wrong with skipping that to just go to the pub/a bar with friends though. So much easier now that they are smoke free. I drink when on theophylline (and I am super sensitive to it) but there are frequent times when I am too maxed out on too many meds to really go down the alcohol route. If people give you grief then ignore them- who cares if they need alcohol to have a good time. It doesn't mean that you should and it doesn't mean that you can't have just as much fun. I started to enjoy that time of my life much more when I focused on what I could do/did enjoy rather than always focusing on what I couldn't/shouldn't do.
Hi,
I don't have severe asthma myself (though I do sometimes feel that people who don't know don't understand that even moderate asthma really can stop you being able to do things sometimes and it's not 'making a fuss over nothing' - but I don't have to deal with the ITU admissions etc). Sarah R obviously has a much better idea of where you're coming from with that.
I just wanted to echo her though and ask: do you actually like clubbing? Because I really don't, and don't miss it now that I'd find it hard to dance around, but I've met people who also don't, so we do something else. And with the drinking - I'd like to be able to drink but for some reason I am totally unable to process more than a tiny amount of alcohol so I don't do it! When I was 18 that was a bit of a novelty and I did go to some boozy parties which could be annoying - if everyone else is drunk and you're not - but as I got older (now 26) I had no issues finding people who wanted to do the same things, and some of my friends from back then were also not bothered by this and I'm still in touch.
I realise that there are other issues here that you're worried about guys dealing with, like the ITU admissions and the other medical things, and I can't really help there, but just wanted to say that it is possible, even at 18, to meet people who will be happy to meet you halfway, or even just like similar things! Also, as you get older you'll probably be meeting older guys who might be a bit more mature and able to deal with the way you are and see past it to get to know you, rather than just seeing all the health-related things and running!
Hope this helps a bit.
SarahR- i don't think you realise how nice it is to hear to that there are people with severe asthma in functioning relationships (i was running out of ice cream at 3 am and thinking about how i was going to spend my life as a crazy wheezing spinster). The support from my friends and family tends to be very good, and i still live at home so in that sense things are quite easy. but Sadly i seem to be one of those asthmatics who just progress despite treatment and because cyanosis is a regular but not necessarily serious issue for me it is quite hard to tell when i need to go in.
this may be completely wrong but in comparison it kinda sounds like you've 'cracked' your asthma, at least to a certain extent?
also the physical/superficial side of things, as in scars from arterial lines, and serial ABG's, and the puffy face from the steroids, was this something that you found was an issue or not?
Philomela- okay, i suppose i never really like clubbing because of my asthma, if that makes any sense? i mean the air tends to be quite thick and everyone seems to have gone perfume/deodorant happy. also me and my friends have just finished exams so most people are boozing it up at the moment. but i think its more of seeing everyone else doing it and being a bit envious at the fact that they an be so carefree. but if you do go out and drink whats your strategy, as in one drink then stop and switch or do you make your drink last etc?
but in the mean time i now have a checklist of things that i can do stuck to my wall (and i'm happy to say its longer than my prescription list), and i suppose the right person will appear at the right time.
thanks for your replies they both really helped
Glad it was helpful! I just don't like clubbing anyway so I don't miss it (even as a moderate asthmatic I know what you mean about the air and the perfume, and I wouldn't last long dancing) - but I know what you mean about wanting to be carefree, as it seems like at your age, going out with your friends shouldn't need to be full of plans and can I do this, and will I end up in hospital? And clubs aren't somewhere you can really sit and talk to people, so I would be annoyed too if all my friends were going off and doing it and celebrating the end of exams. If you're planning to go to uni it may be easier there to have a range of things to do and people to do them with and not be on the sidelines, if that makes sense?
Re the drinking: I can't be of much help I'm afraid as when I say a little amount, I mean like a quarter of a glass or less - I couldn't order a whole drink because I wouldn't be able to finish it! So I just stick to non-alcoholic drinks all the time - I like cocktail bars as some mocktails can actually be nice and it's not just boring overpriced orange juice. I do have sips of other people's 'real' ones though, just for the taste. It's not the worst thing ever for me but I do get what you mean as at your age especially, it can be a bit isolating not drinking when other people are and asking why you aren't. Also annoying, if you want to and actually like drinking sometimes - I guess as I've never been able to I don't mind so much!
oops sorry ramble again - but hope this is helpful.
Ah yes, the physical side effects of asthma drugs/admissions. This is a tough one. So for starters I am the reverse of most severe asthmatics and for some reason I can't keep the weight on. I actually lose weight on prednisilone and for me it is a constant battle not to be too underweight. I get no end of grief from my boyfriend (and friends, family etc etc) about being too skinny, but then so is he so I just give as good as I get and don't take it personally. I have scars form the art lines though and I bruise very badly, especially on my legs so I wear leggings under skirts a lot! I also look very tired ALL of the time, which I hate. After coming out of hospital I am always really self conscious as I do get a moon face and abdominal fat/bloating which isn't a great look when combined with super skinny torso etc. Generally I end up looking a bit pregnant....
Anyway, I'll just depress myself if I focus on all the side effects of the treatments... Attractiveness is a strange thing and I don't think anyone can really anticipate what qualities in someone they will find attractive. When you meet someone you have a connection with I think you are attracted to each other naturally and so it really shouldn't matter if you are not looking the way you wish. Clearly I am happier when I am having a nice break from hospital and I look vaguely 'normal' but I think appearence is something that bothers me and not him. The only real difference is that you are more confident when you aren't covered in bruises and obvious scars and all puffed up from steroids etc. Confidence makes a huge difference to how people perceive you- if you aren't worried about how you look, they won't be either. And if they are that shallow then why would you want to be involved with them anyway!
Look at your scars as positive things- they each display the fact that you fought and won! You shouldn't be ashamed or embarrased of them.
Oh, and to be clear- just because I am able to put a positive spin on being a young severe asthmatic doesn't mean that I don't have days when I cry hysterically, eat masses of comfort food (currently I have a thing for magmums....) and generally think that life is totally and utterly unfair and that no one can possibly understand how rubbish this is. Then I wake up the next day and have to get up and get on with it because life goes on. Before you know it you've forgotten ow upset you are/were and everything is a bit more manageable again. Also steroids are horrible, horrible drugs- don't underestimate how tough it can be taking them for long periods of time and be kind to yourself. Also nothing beats a good DVD boxset- they have got me through a lot. Cold feet and Greys Anatomy come highly recommended.
mhmmm, i have the same problem with the weight and i end up looking like a lolly pop half the time, i wonder if because of our age/sex the pred affects us differently? although i have a feeling the fact that i only eat jelly and ginger nuts in hospital might play a part in this. i've been on it for about 10th months mostly at 40mg, the moon face was the problem at first, now it doesnt bother me as i've had it for so long, but the hair on my jaw line started to get a little thicker... and noticeably so (still haven't found the best way to remove it without it looking obvious)
i suppose its the fact that i have an art line put in every few weeks or more, so they don't get a chance to recover and their quite painful... so its quite hard to forget that the scars.
phew! (its not that i'm glad you have days when you cry hysterically) but i was starting to think you might have been wonder woman, i tend to save my positive spinning for family and friend appeasement, and then slide down my bedroom door screaming when everyone's out. personally i find curly fries and chilli oh so effective, though i am tempted by the double chocolate caramel magmums i see floating around. though i dont have a DVD player, so i cant do box sets, i find making discharge letters and bank statements into origami animals oddly empowering.. until my GP asks for a copy of my latest discharge letter and i realise that its now been made into a crane and a few other eclectic animals.
I can really empathise with you on this! And don't worry it's completely normal to feel the way you do (or at least I hope so as I have had many a similar 'meltdown!')
I too have had boy issues, but mainly of the overprotective/panicking type which although understandable I found very annoying as I tend to be of the indifferent/laid back type when it comes to asthma and admissions .... As I'm so used to it! But this def created tension and issues! All I can say is that there will be someone who will have the right balance of concern and understanding, you may have to just accept that some people in the mean time may 'run away' as you say! (I'm still learning to accept this!)
I've just finished uni and have battled with the social side throughout! Mainly because I'm too stubborn to accept that sometimes going out partying and enjoying myself isn't the best idea and many a night out has resulted in me ending up in hospital ... So much so it's a bit of a running joke with the resp ward and they half expect me to turn up after big nights out! You say that clubbing and puffing away on salbutamol isn't possible but there are many a photo of me on a dance floor with portable neb in hand! It is possible, just maybe not advisable! (especially when you're on a medics night out and bump into f1s/f2s who have treated you and then either phone an ambulance or tell on you to the resp nurses who phoned me up the next day!) But as others have said there are many alternatives and sometimes other people appreciate just going for a meal/drinks where you can sit down and talk!
Argh, the moon face! And agree about the many bruises from varying lines ... Esp as I work in a hospital so have to be bare below the elbows. Little awkward when patients ask me if I'm ok or been beaten up because of my many bruises. Then I have to explain that they're from cannulas/abgs etc like the ones I'm about to do to them!
Anyway I've pretty much waffled on about nothing! All I really wanted to say is that it is hard when everyone around you seems to be so carefree and enjoying themselves when you're stuck in hospital/stuck at home recovering but you will have some good days and there are still things you can do and enjoy with friends. And sometimes if you do something which does push you over the edge/put you in hospital ... It's normal and try not to feel disheartened/frustrated!
Oh, Sarah, I truly sympathise with you. I'm very sure, though, that there is someone out there for you and when you find him he won't be put off by meds, hosiptal stays or anything else. There are three things you need to keep in mind.
First. Don't ever feel you have to take second best because of your health issues. I guess the test is not whether you could live WITH someone, but whether you could live WITHOUT them. If you find that you could live without someone then beware of commitment.
Second. Don't BE second best. You deserve to the the one person that somebody can't live without.
Third. Every teemager who ever lived has fears about whether they will ever find the right person. You may have had relationships that haven't worked due to your health, but that is probably because the boys you have been out with are still very young and don't have the confidence or understanding to deal with your health issues.
Good luck, and try not to give up.
Annie
xx
Hi sarah93!
I have exactly the same problems - I'm 17 (18 in under a month) and have struggled with severe asthma all my life. I hide the severity of my asthma from a lot of people, such as nebulisers as to be honest, I get embarassed by having the nebuliser mask on my face 6+ times a day!
I am very lucky to have a boyfriend who knows how bad my asthma is (although has only seen nebuliser once though!) and who visits me in Hospital when I'm in there. It was very hard to find considering the fact that I'm 'overweight' for a 17 year old due to continuous steroid taking and lack of exercise.
Being a teenager with asthma sucks, I've lost a lot of good friends (especially in year 11 due to pneumonia and 3 months off school) which really sucks. I hate knowing that all my friends can do 'what they want' like go on holidays together, and plan random days out to theme parks as for me, I have to wait for the day before and predict what I'll be like. I can completely sympathise with you.
It WILL get better when we get older - although Uni is my next challenge! Chin up, you sound like a fighter and will come out the other side with a partner who supports you 100% despite all the hospital visits!
Good luck with everything - always here if you need a chat with an equally annoyed asthmatic (almost!) 18 year old!
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