Hello Fellow Asthmatics

[ribbit]

Hi my name is Jenny and I am a 35 year-old severe brittle asthmatic. I am new to this blog and would like to make contact with anyone with asthma, to share stories. knowledge and experiences.

[julian157]

hi jenny i to have brittle asthma i am new to this blog as well i dont no how bad your asthma is only mine is really bad i am in hospital nearly every 4 weeks i would like to talk to someone who as the same asthma as me only i few people have never heard of it i have had to give work up with mine only the amount of time i am in hospital .

[ribbit in reply to julian157]

Hi Julian. At last I have found someone else like me!! Ok so I shouldn't be glad that someone else suffers like I do, but you know what I'm getting at.

I had to "retire" from work 5 years ago at the age of 30, as In one year I literally spent more time in the ITU of my local hospital (8 days) than I did at work (7 days) out of 365!!!! (I was actually in hospital for over 130 days in all over several different admissions)

Over the last two years I have managed to get my admissions down to roughly 8 weeks or so. Came out last time (after 48 critical care plus ward time) just over two weeks ago.

People hear the word asthma and think that we take to odd inhaler and are then fine! You and I, and ToniCook1 (below) are the extreme end of the spectrum and thankfully there aren't too many of us.

[ToniCook1]

Hi Jenny - I too have brittle ('difficult') asthma. I've been on oral steroids for around 20 years and have recently had Xolair treatment at Royal Brompton Hospital, London. Unfortunately, due to recurring chest infections over the last few months, my asthma has been particularly bad and I had to be admitted to the RBH for IV Theophyllin and hydrocortisone. I was discharged on Thursday (3/5) and, although the asthma seems much better, I feel extremely tired and very low ... not so good! I'm hoping this improves quite quickly, as I am due to go back to work on Tuesday

How about you Jenny? How has your asthma affected you life?

[ribbit in reply to ToniCook1]

Hi Toni - I too am steroid dependant and am also on Xolair (have been for just over a year and can now actually go outside without wheezing!)

I have had two admissions so far this year (which is great for me!), the last one being about 3 weeks ago. (please see my post above to see how asthma affects my life)

I know what you mean about feeling low after discharge following Amino and Hydro. It's the Hydro come down which is hardest. I hope you are not trying to reduce your steroids too fast as that will leave you depressed with no energy. Also on the energy front, If you think about it you probably used a lot of energy, and probably didn't sleep too well whilst you were in hospital (How long were you in?) At the risk of sounding like a mother hen, should you really be trying to go back to work on Tues. Please don't get into the cycle of pushing yourself back to work, only to get so tired you are susceptible to bugs and become ill again!! 'We've all been there!!!

[ToniCook1 in reply to ribbit]

Hi rabbit and thanks for advice - I'm new to this site, so any any advice/info gratefully received!

You say see your post above to see how asthma affects your life, but I can only see one paragraph with no details - I am missing something. Sorry bear with me!

I was in RBH for 10 days - found staff (most of them) to be lovely and very helpful. Also had lovely fellow patients, which made my admission so much more bearable. I suppose only criticism is that I wasn't warned by medical staff how crappy I'd feel when I got home.

I will heed your advice, and see how I feel tomorrow before going in to work. Fortunately, my employers are very understanding and I can work from home, which makes things easier. Thanks again ribbit :o)

[ribbit]

Brittle Asthma can either become your whole life, or be an element (albeit very annoying!) of an otherwise busy life. I was once given a lecture by my younger brother about living within my health and not wasting energy pushing it further than it wants to go. At the time I didn't appreciate i, but with thought since I have realised he was right. Push it and you pay later. Manage it and you can live a "normal" (for an asthmatic) life.

[purplekaty]

Hi All

New to this site after another episode in hospital and just looking for ideas to help my condition and others that understand hope crappy I feel about my health and depressed how it rules my life.

I know there are many worse off than me and just feeling very down fromm the constant overload of drugs

[colind]

well put stitch

[ribbit]

The asthma nurse at my hospital claims that patients are allowed a "why me?" down day or two, but not a whole week!!!

Personally I say that I could sit in the corner and cry, but what would that achieve?

I say "hey ho" and off I go again!!!

[Daxiemad]

Another Brittle Asthmatic has joined the crew ME

[Hidden in reply to Daxiemad]

And another brittle asthmatic joined ME

[ribbit]

HI Daxie

I have just been around the blogs and read a bit about you and your asthma. I too was a Social Policy student and should know about how the system is designed to make you feel crap about yourself. I think using the skills you have got is the best way of improving your self-esteem. I actually volunteer at my local hospital (non-clinical / infectious areas) because it makes me feel that I can give a little something back to the NHS that has saved my life on numerous occasions. Also being able to say that I am going to "work", or have colleagues at "work" makes me feel more normal. (Ok so "work" is two hours on a Thursday morning if I am well enough, but hey it's work to me!!!).

[Why_Bird]

Im a Brittle Asthmatic and I have been fired from 3 jobs now due to my health and forced out of uni in my early days (only been asthmatic for 4 years now... went straight to brittle!). Im in every 4 weeks for 3 days of amino and hydro and about every 4ish months seem to end up either on Bipap or intubated.

The thing Im findign most helpful to me and my asthma is swimming and keeping active yes I dont swim far but enough to get my heart working and i think its important not to stop as soon as you get breathless as this is normal when exercising. Also eating home cooked meals with little or no herbs and spices.

[3lys3-may]

the only thing i can say is don't push yourself becasue you could end up with a full scale asthma attack

[valj]

Hi Jenny I also have brittle (difficult) asthma. I am in the process of waiting to see if I can get ill health retirement and pension. Am also waiting for the dreaded work capability assessment.

[ribbit in reply to valj]

Hi Vaji

Good luck with your retirement plans. I know its stressful waiting for others to see what is obvious to us!!

I too have just filled in my ESA health questionnaire, after years happily on incapacity benefit. Lets hope they are sensible at the DWP or else its a case of "let battle commence"

[sue62]

Hi my name is sue 49 and i have severe brittle asthma how do u find u cope with it

[Hidden]

Hi Jenny I'm jake I have severe brittle asthma how do u cope and what treatments do u use I use ventolin beclomasone and I take allergy pills. W

[Hidden]

What do u do on a everyday bases

[4fryer9]

I am an Asthmatic too Julien, what is Brittle Asthma, please advise me. I have 3 inhalers plus a tablet I take at night but unfortunately I get breathless doing most things including taking a shower when I start coughing I go dizzy as well. I have to go back to chest specialist in a fortnight to see if I have COPD or not, it is very worrying because I used to be very fit, running swimming five a side footy. I'm sorry to bore you I am new this site. Regards