First, a big thank-you. I stumbled on Asthma UK during an internet search earlier this week, and have been reading through many of the posts and discussions here. I've found them quite helpful.
I am currently working though a longish asthma exacerbation that started with a cold at the end of October and is only just beginning to slow down with the help of more steroids than I have ever taken in my life. In addition to Singular, antihistamine, and a steroid nasal spray, I'm currently on 1000/day Seretide, plus oral steroids which are gradually being tapered down (5mg/5days) starting from 40mg/day for a week. That was the third round of steroids in two months – the first two were done without a taper but things got worse not better when I went off oral steroids those previous two times.
Things do seem to be improving gradually if I focus on the trend line and not the noise (temporary worsening due to fighting off colds or needing to walk in cold rainy weather).
On the other hand, the fact that a hard to control exacerbation like this happened has given me some food for thought and no small concern. I think the reason can be captured in this snippet of conversation between myself and one of my doctors when discussing reducing the prednisolne:
Me: I'm still using ventolin every day.
Doctor: I can live with you needing ventolin a few times a day. We'll be in a world more trouble if you have a cracked spine.
As I read it, he was basically saying that we're at a point where we need to make trade offs because complete control of your asthma would likely come at a very high price. I'm hoping he is wrong and that with better weather and enough time things will calm down completely from this exacerbation and it will be bye-bye ventolin as a daily friend.
The ventolin isn't of course what really bothers me, but rather the fact that I need it at all. The ventolin is helping now, but just before I started in on the third course of steroids it was doing very little at all.
From an A&E perspective my flare ups are relatively mild. The three times I have gone in during this exacerbation, I have good oxygenation coupled with an ability to stay calm and a lot of different tools for keeping my breathing steady, no matter how much effort it takes. I'm a one neb and off you go sort of lady. But that doesn't tell the whole picture. What wears me out and gets in the way of living life is that in my more difficult moments this control comes at a price. It makes breathing an activity in its own right leaving little energy or attention for other things.
This week as a whole was not pleasant – I had a brief cold at the end of last week and I spent most of this week in bed just breathing. I take that set-back as a mild (for me) form of my usual post cold reaction which usually also includes a bend over double cough. Today I did have a really good day and was able to get out see friends and take a nice long walk without any incidents. I guess I'm just frustrated that there aren't more of the good days yet – a week full of them with maybe only one or two bad days. For the last three weeks it has been much the reverse: a good run for 24-48 hours and then another bump in the road.
Overall I do think there is progress. Each good day does seem better than the last one and even on the bad days the air seems to feel a bit freer than it did.
So how do you stay focused on the progress and not let the ups and downs get you down?
Firstly just to say sorry you're struggling but glad you found this forum, I've found it an amazing source of help, information and support.
As to your question, for me its about trying to gain some of acceptance of where I'm at but keeping in mind where I want to be and what I'm doing to work towards this goal.
If I'm having a bad day then I've learnt I really di need to sofa surf and try not to get frustrated (pls note I say try!) and onmy good days take advantage and do things like see friends and family or meet a friend in town for a coffee, even if I only get out for an hour or so I feel like ive done something.
Just keep in mind where you want to be and that you will get there.
X
Hi Beth!
welcome to the forums and i hope you find plenty of support!
there are two things i would advise trying. one is that of you find you can no longer do tje things you used too then experimant to try to find new occupations and ways of enjoying yourself. i.e. if you used to do sport that is now too much for you why not try arts and crafts, films music or surfing the net. or just phoning a friend
also i would suggest as much as possible trying to be flexible so tjat its ok to have a week in bed and postpone the shopping or trip out till whenever you feel you can best cope with it
personnally during my teens i was very active playing some sports on an international level. now i have art club twice a week and am starting a correspondance course. have also recently started wheelchair basketball when im up to it. my coach is incredibly understanding and never questions that i dont turn up for a month and when i do sit half the session out and i am pleased because as you say at least i have done something and interacted with others in some way!
i would like to thank you for this post because ot puts into words very accirately what i for one pften feel but am unable to express so adroitly
i do hope things improve for you soon. let us know how you get on!
I'm glad you've found this forum and I hope you find it as useful and supportive a place as I have. I think a lot of us have come here when asthma has changed our lives in some way or another.
There will be good days and bad days, but hopefully the good days will get more as meds are changed and start to work better. And in the meantime make good use of the good days, like you have with your long walk etc, and try not to let it bother you that you can't do the things that you want to on some days. I've taken up knitting, so this is something to occupy me when I'm not great and i don't mind so much that I'm not climbing or running which I used to do a lot of.
You've come to the right place! I would think that almost everyone using the forum knows how you feel and will be able to help with advice. Now that you've found us, stay with us! In common with many others I found that just participating in the discussions here taught me more about my asthma than years of talking to my GP had done and helped me learn to accept the things I can't do, make the most of the things I can, and keep a sense of humour about asthma. It's also great for the occasional rant!
I hope that things start to look up for you soon, and that you get your asthma under control again.
Hi Beth and welcome!
I'm with Annista - the forum has been SO helpful and has taught me way more than I could have learned elsewhere. If I weren't freaked out by the idea of them reading the utter **** and rambling rants I write on here a lot of the time (apologies for this), I could wish some doctors would come here and see it's not as simple as they realise. Some are great at understanding how frustrating it can get but others never seem to get how much it can limit you or that even 'moderate or mild' asthma can have a big impact on your life.
After an appt with a normally good consultant I wished I'd said this, because he was saying it wasn't severe, and I wanted to say yes, I know it isn't, but while it could be much worse, moderate but poorly controlled asthma can still make you feel rubbish and start taking over things. So I know what you mean about having symptoms that look not too bad from the medical perspective but take up a lot of energy and time which should be used for actually just living your life (you put it all so well!). If it's any consolation I think I was in a similar position to yours last year and some of this and I now finally feel like I'm getting somewhere.
Have you been referred yet? I can't tell, you talk about multiple doctors so perhaps yes, but if not it seems like you definitely should be. It took me a bit of time to get to someone who could help (and in my case wasn't dismissive - I'm a bit weird to be fair but they weren't thinking outside the box), so if you really feel you aren't getting anywhere and your doctors can't help then a change or even a referral to a specialist centre might be in order. I thought specialist places were just for really severe asthmatics with several bad attacks a week but it turns out they're good at 'difficult but not severe' types like me as well and while they're not always the most organised and I wasn't sure about them to start with, they seem very anxious to help me with my specific problems and treat me as an individual rather than saying/implying, as I was sure they would, 'why are you bothering us when we have so many patients much worse off than you?'
Sorry for my rambling; I have no idea if any of this has helped but I wanted to say something as it's a rubbish position you're in and I've been very down in the past myself (mainly came on here and ranted...). Really hope things improve for you soon. Have you ever called the AUK helpline? I've found them very helpful, expert (including 'out of the box' thinking and sympathetic so worth a try if you're not sure what to do.
Thank you all for your warm welcome and wise words!
I had another good day yesterday – so two days and counting!
Angelica: Your point about accepting where one is really hit home with me. I think I need to work on allowing myself to be happy with small goals and milestones even if they don't seem like a big deal to someone else.
HannahRose: I hear you about being flexible. I really like your suggestion to focus more on finding activities that will allow me to pace myself as needed. One of my big concerns is work and in general things I've committed to do for others, but I think the same principle applies. It's important to focus on what can be done and to work on creating whatever flexibility I genuinely need, not get caught up in what can't be done or might not get done, and then back off from things because of that.
Asthmagirl: thanks for the well wishes
Lou: I gave a lot of thought to what you wrote about there being good days and bad days and the implicit message to take them in stride. I think it does help to accept the good and bad as part of the rhythm of what is. It also occurred to me, that I can use some of the down time to put together lists of things that do need to get done so that I can make better use of good days. My natural style tends to be spontaneous to a fault, so maybe this is an opportunity to work on that and balance myself out with a bit more planning ahead.
Annista: I think you are quite right about there being many things to learn about this that can't be learned from the GP. When I meet with my doctor it is all about what is working and what isn't medically. That's his job of course, but there really is much more to this than just the medical side.
Philomena: No need to apologize for your ramblings. You “ramble” in a very helpful and personable fashion! Thanks for taking the time to share your thoughts so fully.
For now, “my doctors” refers to two doctors in the practice I go to: my regular GP who I've been seeing the last six years, and one of the other internists in the practice whom my regular doctor has arranged for me to see when he is out of the office.
Both of them seem to know their stuff. There's no cramming asthma into little bitty textbook boxes on either of their parts. I think they have both been thoughtful and creative in their approach. If things are slow to get better, it's my body that isn't playing according to the rules, not their being short of ideas or failing to take the situation seriously.
I have been referred, but the appointment isn't until the end of February.
Glad I could help a bit! And glad to hear that you have good drs in your GP practice - very thoughtful of your regular one to arrange a 'regular' one for you to see when he's away! I dislike seeing ones who aren't my usual GP as I tend to find I have to explain it all again and they're sceptical which I hate at the best of times but especially when I'm not feeling great. As I'm sure you find, it's much better to have one who knows you and can get down to business quickly.
At the same time, I'm glad to hear you've been referred. My GP is also great and has really helped, but my body wasn't playing by the rules either and he had to admit he'd got to the point where it was too specialist and difficult for him (which not all drs will admit so I appreciated it). I just got unlucky in that the first couple (I moved) of consultants I saw were less open-minded, but there are some great ones out there who will listen and should be able to help.
I defo agree with there being more than the medical side. I thought I'd just have to put up with the other side of things as it could be worse, but while I'd never considered asking to talk to someone I did appreciate the consultant at the specialist centre asking if I'd like to, because while he wasn't saying it was caused by stress at all, he said he could imagine that having all this going on for 2.5 yrs would not be at all fun for me and I might like to 'offload'. And there were definitely a couple of times I rang the AUK line for something 'practical' and kind of ended up offloading on them, which they were fine with and very nice.
Hello again Beth
just thought id share another thought with regards to pacing yourself when it comes to work or engagements you jave undertaken to help others.
i would imagine things would work out much better if you did turn things down when you feel npt really up to it. otherwise you could make yourself really ill/exhausted and would be of no help for much longer.
i do hope things improve for you soon. let us know how you get on!
Rose xx
Well, I had four good days in a row plus half of another one - a record in this exacerbation. I'm very happy about that.
But I think I pushed myself too much today as I had a lot of errands that needed to be done. They did get done, but since I got home I've been nebbing every three hours. I had been hoping to go down another 5mg on the prednisone tomorrow, but will instead have to call my doctor. Grrr.
Bump in the road.
Lou - I keep saying to myself ""there will be ups and downs"" - it does help.
Rose - I'll eventually get the hang of this pacing myself business, but I'm clearly not quite there yet.
Angelica - got any more room on that sofa?
Always room on the sofa, I'm going for gold!!! Lol x
I'm going for gold too, been attached to my sofa day and night since friday. Getting better though
Very glad to hear that you've had some good days Beth, but take it easy.
Congratulations Beth!
am very glad to hear that youve had some better days recently. now you can reward yourself by entering the sofa surfing competition (Lou and Angelica beware...!)
Rose xx
LOL, I'm planning to get out of that comp as quickly as possible. Fingers crossed none of us have to do too much sofa surfing. Best wishes everyone.
The good news is that I'm still on for tapering – my doctor wasn't too worried about “one really bad day” (his words).
I'm still having trouble getting my mind around the idea that Wednesday counts as a really bad day, given how lousy I've felt the last two months. It was certainly in the lowest quartile, but I've had worse and there was a period when a day like that was pretty average. Still, its nice to get some sympathy from your doctor.
Lou: the funny thing is I was trying to take it easy. My errand day on Wednesday was supposed to be a trip to the doctor's, the equivalent of a walk from one end of high street to the other doing errands along the way, and then home again. But it turned out to be one of those person A wants paper work from person B days and by the time I was done, I'd gone back and forth from one end of downtown to another about five or six times and was totally wiped. It isn't a big downtown, but still. At least I had the good sense to take the bus home and not try to walk.
The bad news is that my regular doctor also seems in trade-off mode. If my asthma were well controlled a day like Wednesday would be reason to start in on prednisone. But given where I've been, having only one day like that in five is huge progress. He's of course looking at the trend line and the rate of noise (exacerbations) along the trend line.
If the noise is also going down and the trend line is moving in the right direction, then over time the feeling I'm making trade-offs will also diminish and I won't be having daily symptoms despite huge amounts of medicine.
Compared to past down days my recovery seems to be much quicker. I rested up yesterday (Thursday), and by evening was feeling like I was breathing very freely. I felt that way this morning when I woke up too but feel like things are slipping back a bit this afternoon. If I really were using ventolin when I first feel symptoms rather than trying to stretch things out until four hours just so I can say I wasn't Q3 or worse, I would have used ventolin an hour ago, which is two hours after last use. Grrr.
Then again this is probably more noise. There is a low front coming in (the rain you got in the UK earlier this week is coming my way here in Israel on the far side of the Mediterranean) and that always seems to be a bit tougher for me. I could swear my lungs have a barometer in them.
In my appointment Wednesday morning we chatted a bit about the long term. I've been worried that this is a restart of a really yucky set of years (1992-2005) where colds would regularly turn into many-month exacerbations. His feeling is that it is pre-mature to worry about that – given the fact that I did have several good years, this may be something that won't happen again for several more years.
There is really no way to know, of course, and not much point in spending emotional energy on a might be. That, of course, is the logical way to think about it. Emotionally, though I just want this to be over – like yesterday. Ah well. /vent off
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