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?