I have decided to air my grief to you all and apologise if I offend but I just need to know if my life is going to be rubbish from now on. I developed asthma 2 and a half years ago and it seems to have been getting worse since. I am on my 3rd consultant as the other 2 seemed to be as much help as chocolate teapots. I am on antidepressants now and feel that I don't have a life anymore. I have been in hospital for 2 weeks in the last month and don't feel any better. I thought I'd have a look at the message boards online whilst I was off sick but I think it has made me feel worse - everyone is so negative!
we not all negative just hard at mo cause so many in hospital. i like you wonder if will ever have normal life again bit than i look at others like wheezerab who spend months at a time in hospital and really sruggle but are always willing to help others.
feel free to pm any of us for a moan when you down cause we all siupport each other at low times. i was only diagnosed may this year and have already had an 8 day stay in hospital. we all have good and bad times. you cud always ask to change your cons. i had that prob b4 was admitted in Sept with a reg who made me feel like a worm luckly saw diff reg this time.
not easy but remember loads on this site are very severe brittle asthmartics which makes life a real struggle for them.
chin up and feel free to pm people or join us on MSN if you want we have several chats on thee as well.
fingers crossed you feel better soon
katharine x
Hi, i wasnt going to post today as im not in a good place today but really feel i need to reply to this. I really dont feel this is a negative site, yes people need to sound off/vent , yes people need to let others know things arent going well and could do with some support but negative???????
This site is full of friendly,supportive,inspirational people who battle this damn awful disease on a daily basis, people who rely on drugs every couple of hours to just breath through the day but who all carry on living life to the best of their lungs ability! People who spend more time in hospital than at home but are still able to raise a laugh with postings about hospital life. I am someone who probably is guilty of posting a few moans over the last couple months but life is pretty bad for my son at the moment and I know people here will understand exactly how we feel.
Anyway I really hope you stick around for a while on the boards and you will see that maybe first impressions dont always count.
I hope you start to feel better soon
julie
I think you will find that those who have the biggest struggles don't tend to shout about them. I know some inspirational people on this site who just get on with things and don't wallow in self pity. I would ask for the sake of them you modify your comments.
As to will your life get any better, life is what you make it.
I have severe brittle asthma - I have huge ups & downs with my stroppy lungs but I get on with things to the best I can.
Where abouts In Essex are you? I am Mid- Essex and have a very good Consultant.
Please air your concerns about your asthma - many people here ask questions that appear negative because they are worried and concerned about their asthma whether it is mild or severe.
There are a great number of us here who have a wealth of knowledge & experience we are willing to share. Please ask us!
What meds are you on at the mo?
We may be able to help explain things better for you so you can begin to get control of your live again!
Take care
Kate
Julie, we all need to vent from now and then and you and Sean have been through more than any 11 year old should have to, but I have never seen you wallow in it!
Others like EmH always helping people out yet as unstable as 2 legged chair, TKS who fights for every breath, Kate who is our mamma sub cut bless her just a to name a few wonderful people who have enough nhs frequent flyer points to get a free lobotomy yet all of whom get on with their lives and don't moan.
bex
ps i know I have missed a whole bunch of others sorry my brain is predded atm!
I don't think that this board is negative at all. Unfortunately a lot of peeps are not too good at the moment. If questions come across as negative it is only because, as KateM says, they are worried about their asthma at the moment.
What asthma meds are you on at the moment? Sometimes it can take some time to get the combination of meds right so please don't despair. I spent 5 months in hospital last year in one go and have spent 20 weeks in this year in dribs and drabs! Life has certainly not stopped despite having rubbish lungs, I am now back at work full time and starting to get some social life back.
Rusty
ps: Bex - do i qualify for free lobotomy yet????
This board is definately not negative. I've found it so helpful especially when I've been poorly to get support and learn off other people. Its also got a lighter side and I regularly smile or chuckle at the messages. People always seem to manage to find humour on here even when they are very unwell.
Life is definately what you make it, I like many others am determined not to let asthma get in the way of me enjoying myself. I've researched and fought to get the right treatment and, touch wood, my lungs are behaving themselves most of the time as I have learnt what my triggers are and how to manage my asthma. I'm not cured but I'm more in control. Previously I had over a year of being very unwell. It is possible with the right support, medical and social to feel better.
Julie, don't feel guilty about moaning its really helpful to come and get support. It must be so worrying for you seeing Sean so poorly. As Bex says you've been through a lot especially in the last couple of months.
Beth
Rusty hunny, you need a brain first and as a founder member of the mad as toast squad you lost your little brain ages ago. Maybe it has gone to off to play with mine which also packed up and left a looooooooooong time ago.
Bex - I would just like to say that you made me smile! I've just stopped pred (fingers seriously crosssed) after just 6 weeks of varying doses but now appreciate why you all talk about pred head.
after about 2 -3 weeks of 40 mg daily, I ranged from wired and unable to sleep, to cramming every spec of chocolate I could find into my mouth, shouting at the kids (and other half but i still maintain he deserved it) and seriously thinking a glass of wine was what I needed for breakfast....
And to Gloomyeeyore... LIFE IS WHAT YOU MAKE IT! DON'T WALLOW IN SELF PITY.... the people on this site don't, but they do use it to air concerns and get support and help from each other....
My asthma is (I believe anyway) no where near as severe as most people on the site, but they have been very supportive to me recently. I've had a bad patch, but keep telling myself thats all it is - I will get back to normal, and yes, I may have bad patches again, but so what - I am stil the same person - just can't walk so fast, and talk so much (no bad thing probably)...
Sorry if we all seem to be ranting at you, but bear in mind that people on here are looking for, and giving support to each other - if everybody was well, they probably wouldn't be here!
Kat
Well let's face it, no one is going to come here and say 'wow, having asthma is the best thing that ever happened to me' are they?
People come here because they have questions or concerns or worries and want information or advice or support, and this board is wonderful for that - I have found it so hugely supportive and yes, positive and inspirational. But it is also important as somewhere where you can be honest about things not being so good, esp when you dont want to worry/alarm/bore your friends or relatives, and you know people will understand.
Ouch!!
its not often one post receives this many replies which just shows the strength of feelings about each other and asthma on this board. Sorry if that a sick inducing gushy statement
Gloomyeeyore
Im sorry you are having a rough time with your asthma and as you will see from reading the posts on this board, a lot do, at all sorts of levels. I am sorry you are finding it hard to see a light at the end tunnel but please try and post a bit more information about the problems you are having with your asthma and consultants.
It may seem negative what you have read but people come here to share everything ups and down times.
I know you may feel like you have offended people but if you can post again the experience of others may just help you in some way.
Will my life get any better? Interesting question…
If I may offer this answer given to me tonight by one of my wife’s friends who I haven’t seen in over a year. Tonight I was wearing my taxi driver wig and dropped of my wife plus a group of friends at a local restaurant. As the friend (Alice) got out of the car she thanked me (in front of everyone) for my help which helped turn her life around. This was quite humbling.
The last time I spoke with Alice was at a function year past October, she was in dreadful state with her asthma and didn’t know where to turn. As it turned out she was not getting the correct support from her GP. The asthma chat that we had came out of the blue, basically this was prompted by Alice catching a glimpse of me using my reliever as she was surprised as she was not aware that I have (mild) asthma.
Anyway, to cut along story short, Alice told me about the medication that she was taking which included pred. It turned out, her asthma was all over the place and the pred was causing much depression and anxiety. Her husband was seriously ill and she needed to be strong for him but was struggling big time due to her asthma and the apparent pred side effects.
Well how could I help Alice, me being a mild (infrequent) asthmatic and having no real experience of asthma meds apart from my blue puffer. Simple, being a member of AUK meant that I was able to pass on to Alice “life experiences†of you guys who post here.
As it turned out, the very next day Alice went to her GP and asked for a review of her asthma meds. This time the GP was much more helpful and agreed that more could be done to get control of her asthma and avoid the pred side effects. This was the turning point for Alice. Whilst Alice still suffers from asthma, her asthma is under control and she is now able to give her husband all the support that he needs.
So yeah, life can get better, thanks to you guys who post on AUK.
Derek
Gloomyeyore, I was thinking about this matter last night. There was a point last year and again this year that I felt exactly the same and I became very depressed about it all. I remember talking to my grandpa who told me that life was too short and that I must make the most of every day even if I was feeling ill. That every little task was an achievement and that I should be proud of myself for getting up and fighting on.
I know that things must seem bad at the moment but please remember that life is too short, there are no second chances and you must make the best out of every situation however hard.
Please do post again and let us know what meds you are on etc and see if any of us can give you some advice to start helping you move forwards in a positive way.
Bex - surely i qualify for a new brain then????????
Julie - you are an inspirational person as is Sean. I am extremely proud to know you albeit via cyberspace.
love and huggles
Rusty
Hello Gloomyeeyore,
I don't post here very often anymore but do read regularly. I read your post and wanted to reply and let you know that your not alone in the thought, will my life get any better. I have also read some of the replys here and been worried about how you would read them. I think everyone on this forum regardless of the severity of their asthma needs to rememeber that everyone asthma or no asthma can feel like this. Gloomy came on here, posted, which we all agree can be very hard and was very honest in how they felt. Alot of the people on this forum battle things that arn't asthma related, have other health conditions and many other things, so the question can be very valied. I know that i feel this many times and wonder.
Life isn't nesiserilly what you make it either. My day is dictated to me by my body. my head and the people that i neeed to help me. I can wake up and my mind want to do something but my body wont co-operate, and can wake up my body wanting to do something and my mind wont want to.
People have mentioned this thread and that some of the posts seem a little harsh so as a moderator i came to see. I tend to agree. I did not read gloomys post as a insult, i read it as a honest statement. A call for help maybe.
Something that comes up on these forums from time to time is the issue of moaning. I think that no one on here moans, they are honest, they fight hard so need to release somewhere and the fact that they can do it here in this safe threatning free enviroment is great. Please please continue to post as every post will help someone in someway or another. And if you don't like what someone says, or think they are wrong, you can say how you feel but please don't flame. There are alot of vunerable people on here.
Gloomy please come back and tell us more.
This is one of the best sites on here for asthma(and anything else)we discuss.I can honestly say without this I wouldn't have nowhere to turn for advice and support.Some of the people on here are a true inspiration.My daughter is 6 and suffers from brittle asthma and has spent most of her short life in hospital.She has good days and bad but she is always so bubbly through it all.She loves me to read about some of the others on here.Stick around for a bit Gloomye and read some of the other topics and you'll be amazed at some of the things these amazing people manage to do. At the end of the day life is what you make it.
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