A period of readjustment (rambling moan alert)

Hi,

I've just joined this forum because I'm going through a period of readjustment in my attitude towards my asthma, so I apologise if this is a bit of a waffle.

I've had asthma since a young child, so can't remember ever not having daily inhalers etc. I would generally say my asthma was moderate, but controlled and so far I've never had any serious attacks as I've always responded well to the reliever inhaler and it's never really stopped me.

As I've got older (I'm now almost 40) it has changed slightly. I'm less allergic and don't wheeze like I used to. I may feel as bad (out of breath, irritable, and strangely enough an itchy chin) I just don't sound as bad. But what's bothering me now is my response to getting a cold. In the past this has always been a trigger, so I have always doubled my preventer inhaler dose. I would always get an annoying night cough for a few days-a couple of weeks and might need to use the reliever a bit more, but it was just one of those things. However this time (and a similar thing happened last year) its been worse. I'm out of breath through doing the smallest of things. I'm OK (apart form an itchy chest, neck and chin) if I sit down and do nothing (with no talking) but as soon as I get up and do something or chat to someone for any length of time I get increasingly out of breath to the point when I have to stop and take a breath 2 or 3 times a sentence, get lightheaded and get a sudden headache. I'm also very tired, irritable and lost my appetite. I've been taking my reliever 4-6 times a day, but it just doesn't seem to work like it used to. If I sit down gradually I feel better, but it all starts up as soon as I start moving again, whereas I used to be able to take the inhaler and within a few minutes get on with things again. I have been to the doctor who as I had a lower peak flow reading than he would expect (350 - no idea what is normal for me as I don't have one at home but think I've been well over 400 when I had it done a couple of years ago) has presribed me 40mg a day of prednisole for 5 days (for the first time in my life) and so far I've taken 2 doses. It hasn't had much effect so far, although I suppose its still early days.

The big thing for me at the moment is I feel i have lost confidence in my asthma. I suppose I always took it for granted that I would never have a serious attack, but now I'm not so sure. This loss of confidence is probably also down to the fact that my mum, who had asthma from childhood, has steadily got worse as she's got older and now has COPD as well and is on her 4th hospital stay this year and maybe I worry (probably with no good reason) that this change in my asthma is the beginning of it getting worse. I also realise that I really don't know what to do if I did get bad and wonder if I would recognise when i needed urgent help. This is probably complicated by the fact that I live on a small island and the nearest hospital is a 30 minute ferry (plus a variable wait for the next ferry) and a 30 minute drive away and if at night its either having the ferry crew called out for an emergency ambulance run or a helicopter.

I'm also a bit frustrated at how little I can do at the moment, especially as I have a 3 and a 6 year-old, a 19 year-old with asperger's and a disabled husband (arthritis, prolapsed disc, chronic fatigue, chronic pain, depression and PTSD). I suppose our household functions because I am usually well and whenever I'm not things start falling apart and I wonder how long it will take to be back to normal.

Of course I am aware I am probably being a a bit of a drama queen about it all (probably because I'm tired). I realise that I am nowhere near as bad as a lot of people and so I apologise for the moan.

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Rissa,

I don't think you're being a wimp or over-reacting at all! I know my asthma has changed over the years, and it can be scary when it reacts differently than I've come to expect. About the pred. I had noticed that my asthma doctor usually gives you a two day out of work excuse when he prescribes it, and his office staff explained to me that it usually takes about 48 hours to fully kick in. So hang in there...hopefully by day three you will be able to tell a differnce. And if not, I would definitely keep in touch with your doctor.

Also, over the years, I've gotten an asthma action plan, just for the reason I can read it and figure out best what to do when x,y, or z happens. It's not perfect, because I still have to make a decision as to what to do next, but as I've used it we've been able to add to it, and I've gotten my questions answered, so it's much less scary than it used to be. Because at least I have a place to start when I don't feel well, and there's instructions on when to get help with my doctor or the hospital.

And certainly if you live on an island, I think it would be very helpful to ask what is the best way to get help in an emergency. Hopefully you will never have to use it, but I think anyone who cares about you would want you to have peace of mind about that. I know I've had to go to the ER a number of times, and when I stay with friends I will often look up where the closest hospital is, as I find sometimes my asthma acts up when I'm staying in other's homes, and this gives me peace of mind if I should need it. It's also come in handy a few times!

Bee

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Thanks Bee.

I'm on day 3 and it hasn't made any difference yet. I'm managing OK, but only because I'm taking the reliever about 6 times a day, not doing much and when I have to do things, do as much as I can and then have a long sit down until I've recovered. If I don't feel much better by Monday (last day of my steroid course) I'll go along to the doctor again. If so I'll ask him there what is the most appropriate action, particularly out of surgery hours, if I'm having real trouble.

I thought I might also ask if I can have a peak flow monitor, as I don't know if this is a problem with anyone else, but I can have trouble knowing how i'm doing just by how I feel once I've had a few bad days. E.g. if I feel a bit better is it because I am getting better or is it because I'm better than the day before but not better in general or is it because I'm just doing less or am I just getting used to being out of breath etc. Do you or anyone else find Peak flow monitors helpful in controlling you asthma?

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I think a peak flow would be a great idea. It's helpful to know what your peak flow is like when you're well and feeling fine, because then you can tell if it drops when your sick and how much. When I was first diagnosed with asthma as an adult, my peak flow was quite low, and I didn't realize it was that bad, because until I got better control, it was ""normal"" for me. But luckily my doctor was able to guide me a bit through that.For me personally, I find I often get symptoms before my peak flow has dropped, and when it has dropped I'm in real trouble. But, that said, since I use the peak flow over time, on good and bad days, it is useful. And I do think with a lot of people, it falls before they get symptoms. Or right now I can tell I'm doing a bit better when it's higher, but have also had some lower readings. So I know my asthma being a bit grumpy at the moment and it isn't my imagination!I like what you said though about readjusting to your asthma...I think that's exactly what you are doing, and need to do. But it is kind like it's new for a while when your symptoms/reactions change. But you seem to be paying attention, which is the main challenge, until you figure it out!Bee

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Hi Rissa, I'd definitely agree with BeeThere that you're not over-reacting or being a wimp! It sounds like your life is pretty busy particularly with lots of people at home to look after so it must make it harder that you have so much on - I know when I got worse last year I had nothing like your responsibilities but still found it really hard to do much.As you've had asthma for a while you may already know all this, but I can't tell what you're on at the moment - sounds like just a reliever and preventer? If so it would definitely be worth going back to your doctor and asking about going on a combination inhaler, if you're not already on one, or perhaps an add-on like montelukast - doesn't work for everyone but for some people it makes a big difference. I'm not where I'd like to be yet, but I'm definitely finding everyday things easier than last year re not getting really exhausted and that was mostly down to montelukast (and a bit to Symbicort).re the PF meter: some people find it really helpful as their PF is quite sensitive to changes; others (like me) less so - but I still have one so I think it's definitely worth getting one for home and keeping a diary for a bit to see the pattern. Perhaps you might also like to ring the asthma nurse specialists on here (number top left) as they are v helpful and expert and have lots of time to talk about things like how to know when you need urgent help.

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Thanks Bee and Philomela for reassuring me that I'm not a complete wimp.

Bee - Yes, it's almost like being given a new diagnosis when things change.

Philomela - Yes, the extra responsibilites do take their toll as I can't just sit back and do nothing. I'm working on a day by day basis at the moment and just trying to concentrate on what really needs to be done in order to keep everyone fed and clothed. I make jewellery and knit as a hobby, so when I'm feeling up to it I've been trying to do as much as that as possible as it's something that makes me sit still (I'm not very good at sitting still LOL). As for inhalers, I'm on clenil 100 (usually 2 puffs twice daily, but doubled now) and ventolin. This usually suits me fine, but I have been on the same inhaler and same dose since I last saw a consultant when I was about 12 (nearly 38 years ago), so maybe I do need my medication looked at again.