learning to live with it ...

I had an outpatient appointment a couple of weeks ago and was discharged by the consultant, who said, basically, “you have severe asthma. You’re stable (spirometry about the same as six months ago). Go away and live with it”.

So does anyone have any tips on learning to live with it? Do you get used to your limitations? I am finding it quite frustrating; my ‘normal’ peak flow now is a lot less than it was a couple of years ago (and I need pred to keep it there now), and although there are a lot of things I can do now that a couple of years ago with this amount of puff I couldn’t have attempted, there are still lots of things that are now difficult (not mad things like running marathons, everyday things). Do you continue to adapt so you can do more with less puff? Or are peak flows likely to continue dropping? I’m still finding it hard to manage my limitations, and tend to either launch into things thinking I’ll be ok then get stuck, or worry unnecessarily about things that turn out to be ok. Do you get better at this?

I’m particularly worried because I have just started a new job, and while most of it will be, as for the last few years, working at home which makes it easier to work round asthma, I am going to have to do a significant amount of travelling to places I don't know and talking to people/giving talks, and this really takes me out of my comfort zone breathing wise! I’m coping by increasing the pred a few days before something that I think I will need more puff for, but this means good planning. Do I just need to accept this lack of spontaneity? And how do I say no to things at short notice without looking as though I am evading work requests?

Sorry, this is very waffly. I’m not looking for solutions here, but I am finding it hard to adjust – I really thought I’d be able to get better control than this – so any insights from those who have been there would help!

thanks,

ali

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no easy answer

I have learned to live with my asthma and its limitations though I do find it irksome. Especially the tiredness and not being able to do simple things like change the bedding without stopping to rest.

The main thing I find is being sensible and not overdoing it. This can be hard at times like today when I was really enjoying gardening but knew I really should stop after an hour or so.

I do find I am more inclind to try things than I was. I took up ice skating last year and love it. At the moment I am contemplating doing a course on glass blowing which had always facinated me.

I am fortunate that I was granted ill health retirement so work is no longer a problem but remember if you have problems with work you almost certainly come under the disability discrimination act.

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Ali - Hi Im sorry that your cons was so unhelpful do you have the support of a resp nurse as i have found mine brilliant in the past.

Having gone from a very active (hiking, climbing swimming cycling,aerobics etc) moderate asthmatic at 18 to a brittle asthmatic of 33 who can some days only just about get around the house I can see where you are coming from and know how u feel and i daresy i am not alone with that.

From my personal experience i have have adapted to living with lower pfs i used to be able to get 450 now im over the moon with 250 and i know that before i was struggling with a pf of 250, but you shoyuld only accept lower pfs once you know you are getting the optimum treatment that is suitable for you.

I dont know about getting better at accepting limitations !!! I would like to think i have but i do have my blips eg im not allowed to work but i keep going with running a brownie pack despite often being quite poorly by the end of the meeting but my delegation skills have improved!!!

Work wise do you have occupational heath or HR that u can talk to and explain the situation to have them pre- warned .I know where you are comnig from with the public speaking as it is an issue for me at browniess and i find a dose of ventolin(inhaler or neb depending what u use) helps.

I have learnt to just take one day at a time and do what i can each day and try not to get frustrated if i cant(easier said than done i know!!)

Sorry i have waffled now - hope its helps if only a little bit!!

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I think its so bad you were told to go away and live with it. Its not an easy question to answer as everyone finds different ways of dealing with it etc. you should see if you can get a resp nurse asthma nurse to give you some tips or advice on how to deal with it.

Good luck with your new job - i'm sure it will be fine but i can understand being out of your comfort zone - i recently started a new job and as much as i never liked my old one and i got hassle at it i knew how to deal with my asthma there where i'm worried and wary in my new work so i know what your going through but honestly it will be fine.

xx

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it isn't easy to just get on with it, is it?

I am lucky in that my cons will see me regularly, but to be honest there is very little leeway for change any more, so essentially I just have to get on with life as I am.

I have found I have got used to lower peak flows, and I have adjusted to doing things with less puff than before, but it has taken time, and I do have to be conscious of safety issues before I do things - not so much my own safety, because whatever I do has risks with the asthma, but the safety of others. For example I'd love to go kayaking again, but realistically if I was to have an attack I would put other people at risk getting me back to land - does that make sense?

I have also learned to accept help a wee bit - I now have a cleaner (at least I hope I still do, they didn't turn up yesterday...) and will let friends help when I am really struggling, which I wouldn't before. That is not easy to do, but you eventually accept it, at least I did.

Hugs

Hope you get some support from everyone on here

S

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Just wanted to say thanks to everyone for replies, here and by PM. Lots of useful advice, and just hearing about other people's experiences has made me realise that perhaps it is a process of adjustment, and some things I am ready to adjust to, others maybe not quite yet!

Anyway, I am in the process of changing my GP, which is a whole other story, but I am going to try and make a new start with being more assertive than I usually am, especially about asking for help, to try and get myself better set up to cope. fingers crossed!

thanks again everyone.

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its never nice when your told to live with asthma, but you have to trust me when i say its not all going to be doom and gloom.

yes there will be days when your laid flat cos your peakflow wont get up to anything, but you will have days when your peakflow is way up there and you cant help but dance like no one's watching. its all about making the best of a bad situation

wendy

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i agree with anyone else,

its not nice when people tell you to live with it etc.. i rember when i was at school i got out of breath dancing and wanted to take a break and rest and the teacher has ago at me sayign shes got asthma and she can do it and not get out of breath so i can do it, but some people dont realise that everyone suffers from asthma differently, used to always having teachers moaning at me for taking breaks as i get out or breath easly took my doctor 7 years to diagnose me with asthma, was 7 when they finalyl told me i had asthma before that they kept saying i just got a cold or i'm putting it on, was the same with my brother but how can anyone be putitng it on when their whole face goes bright blue, if it was the case the face would be red if they was holding their breath,

my asthma isnt as bad as it was when i was younger am 25 now but still get otu of breath from waling up and down stairs and walking, my asthma is more of a panic/nervous asthma if for example i missed the train or something bad happens and i get upset i start panicing then get really out of breath and end up in hospital, inhalers dont always seme to work for me i find the best way when i start getitng out of breath badly is to smack myself or get someone else to smack my back up the top it seems to help open the airways and within mins i feel better mum sued to do that to both me and my brother when we was little but people thing thats cruel tho and start shouting abuse, i always find it hard to get or keep a job due to my asthma most jobs wont accept me as i got asthma and they thing i will keep having too much time off so have decided to try start my own business then least i dont have to worry about havign time off etc.. as i then can work around my asthma