I suffer from brittle asthma and am constantly in and out of hospital and A&E. It has now got to the stage where it is very hard to cope with and without sounding overly dramatic is ruining my life. It is also very hard for my sister and for my mum who is a single parent. I hate hate HATE staying in hospital as I am sure you will all understand and as a result I feel that my treatment has reached a dead end.
I am under the care of RBH hospital and my local hospital but there is a distinct lack of communication between hospitals and GP and no-body knows just what to do with me lol.
Last night in A&E I discharged myself as I just do not feel the care is there anymore and that what they can do for me in hospital I can do at home (nebs, steriods etc).
Now what I am wondering is if there is any support for families that go through this kind of thing as it is a very lonely world with asthma and I see support for cancer sufferers etc but nothing for asthma, which in my eyes can be just as dangerous, if not more. My family is now suffering as a result of my brittle asthma, and it is very difficult to sit back and watch.
If anybody could let me know if there are any support groups in the Essex/South London area? Or if there is a telephone number that we could call just to chat to somebody?
Thank you for reading my rant I am sure there are many of you in the same boat!!! x
you certainly not sounding dramatic hun, just being honest! and the extra stress, worry + anxiety is not exactly gonna help your chest, so its good that ur asking advice and seeking support, as i have there is only so much we can take, its best not to struggle alone...
it seems the RBH, who is your main hospital needs to have a clear plan for you, as to what your daily treatment is, and how to manage you in emergency when you end up in resus/ A+E each time whether it be in local hosital or with them - COMMUNICATION or lack of!! is a biggie betwee hospitals isnt it!! and it gets sconfusing especially when you cannot predict where you going to end up with an attack - russian roulette really! :S (as with our treatment ini lol). maybe RBH need to offer you and your younger sis/ mam more support as i know its very traumatic/ emotional for them as well to see us like that ini as well as us...
what i have come up with, with my new consultant, is a new agreed management plan so everytime i end up in Costa del NHS i have me individual plan with me that i know i respond to in a severe attack, i.e. nebs, hydrocort mag sulph, amino, repeat mag sulph or amino, if all else fails :S intubate that kinda thing...
maybe thats something you could look into ?
i emailed someone i know, and volunteer with, at asthmauk to ask about support groups etc. as like you i am brittle and hospital seems to be my FIRST home never mind second! for the past 5 weeks and am finding things difficult... no light at end of tunnel, you know what i mean... and it seems there isnt that much support out there. but, what i do find helpful is talking to people on here- these forums, as well as Samaritans, you dont have to ring them, you can write to them or email them, which i have done a few times...
hope you find this useful and things improve for you SB
feel free to PM me anytime
M
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Hi!
I don't have a lot to say, but just wanted to encourage you. I was in hospital a few weeks ago myself and was anxious to get out. Oy. Hospitals just make my ansy if you know what I mean. I also see no end in sight. I don't usually get admitted but have been to the ER (I'm in the States) four times this year. I keep getting lung infections, and I used to have a hope that if my asthma was controlled things would get better, but I've found that I tend to get very sick at least 4 times a year and it is disheartening as it can last for months. So if I were in and out of hospital all the time I think I would feel a bit depressed about it to. I know I already do sometimes.
I like your idea a lot about support for your family...it sounds like you have a good relationship with your mum and sister and care about them a lot. If I were you I would keep talking to the people on AUK and looking for what you and your family need...because either it's out there, or I bet you could start something.
Actually there is the parents and carers section...I wonder if that would be a good place for your mum or sister to vent?
Take care,
Bee
Hi
Just wondering where abouts in Essex you are from? I can't think of any groups as such but the BLF have local breath easy groups and they hold meetings every month for sufferers of lung disease and their families. It does attract a lot of older people though so I'm not sure if thats any good.
Clare
hi.
in essex, the british lung foundation has support groups held every six weeks. timetable from their webiste is shown below, as well as their phone number of where it is held, for you to ring for more info
hope its useful
Essex
The group meets every six weeks, from 10am - 12pm.
Where?
We meet at the St. John’s and Highwood Community Centre, Highwoods Square, CO4 9SR.
View a map of the venue location.
2011 Programme
18 Mar - Telehealth/Telecare
6 May - Dr Howe
3 Jun - Bee Keeping
13-17 Jun - Breathe Easy Week
15 Jul - AGM
26 Aug - Majestic Wines
7 Oct - Colin Stiff ""Crime Reduction""
Nov - Pharmacist
16 Nov - World COPD Day
Dec - Christmas Party - Line Dancing
For more information or if you are interested in joining us at a meeting, then please contact Laura on 020 7688 5594
M
x x x
I was just thinking that I'd not heard of or could find support groups either. At least with cancer there's a chance of a cure and it's not a lifelong condition. There is local Breathe Easy groups set up with the help of the British Lung Foundation. Could be full of older people but might be worth checking them out lunguk.org/supporting-you/b... Specialist nurses and doctors often are involved.
Support for families of Brittle Asthmatics is non existent in our experience. Richard and I have learnt to cope by ourselves and expect nothing, that way you are not disappointed. Breathe Easy groups do exist but like others have mentioned here have noticed they seem to be for the older population. Sure this not intentional just seems to work out that way. Why don't your family post a request on the Parents and Carers section on here and see the response. Plus there are carer networks out there, see what your local area has to offer.
I do feel for you and understand what you are saying. I spent most of my childhood in hospitals and had a very lonely time of it (this was in the 1960s). When I joined mainstream education (at about 10) I found difficult to adapt and my continuing asthma made me feel isolated. Now my teenage son has severe asthma and I see the cycle repeat itself, except that he has a thoroughly understanding parent (in me) who knows what he's going through - also the medical treatment is far superior and we have been fortunate in having a very nice Consultant and GP (when we can get to see the GP!).
Nobody except a fellow asthmatic really understands what it is like. That's why I am so pleased I found this forum. I have picked up a lot of information and made some nice friends, it helps to know you are not alone. Sorry I can't be more helpful, but please feel free to PM me anytime.
Thank you all, that is very helpful information and I will check out the Breathe easy groups! I didn't even know that there was a group around here!!
I was also wondering, I have read a blog on the NHS website and a girl has a severe/brittle asthma card which she takes to A&E and she gets taken straight through with exactly what medication she needs to they don't mess around with her treatment. Does anybody have one of these? I already have the asthma attack card from Asthma UK, but I believe that this is a different type of card. If you do have one, where did you get it from? I will be seeing my GP tomorrow so will ask him if he has any idea!!
defo think we need one of these cards so that docs listen to us when it comes to managing us when we go to A+E and get captured into costa del NHS!! come in very handy!
if u find ot where to get them from, let us know.
be better to have a little card, instead of a blood massive A4 sized paper agreed management plan wont it!! lol
keep well, chin up
x x x
managed to find local asthma support group in my area. breathe easy run it. its tomorrow pm. they run it 3rd tues of every month. see how it goes... prob be much older people there and related to COPD etc.. but you never know...
hope u find similar in your area SB, let me know
M
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okay well, been to local support group, mostly copd so older people, with one middle aged woman, so i was yougest person there :S
person running it has copd / ? some other kind lung disease also, nipped out half way through for cigarette ??
good - talked about normal things over tea/ coffee + biscuits and arranging mony making ideas and raising awareness of lung disease. arranging to go on outings to bingo and having reflexology sessions.
bad - felt like i was odd person out as everyone else much older. all else copd. felt like at a formal meeting as someone taking notes. had to leave halfway though as symptoms came on and no relief from inh via spacer so needed to get home fast for nebuliser, struggling.
not much time spent on actual supporting each other, and how we were feeling etc... not what i expected.
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I am sure there are many of you in the same boat!!! x
and am finding things difficult... no light at end of tunnel, you know what i mean... and it seems there isnt that much support out there. but, what i do find helpful is talking to people on here- these forums, as well as Samaritans, you dont have to ring them, you can write to them or email them, which i have done a few times...
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