Yesterday was a puffy day. Puffy days, when I have them, seem to follow a pretty regular pattern. The day starts off fine, where I get out of bed ok, heartrate jumping to about 160 but that isnt unusual, lungs feel ok, so I start moving about in probably an overenthusiastic and unnecessary manner. As the morning progresses, I get a sort of tightening across my chest, it feels a bit like a vice is being wound tighter and tighter, and I get more and more breathless. By lunchtime, I didnt even have enough breath to swallow my painkillers, which was vaguely ironic as they clearly would have helped ease the muscle ache which was setting in. The physio came round and was so sweet, she looked really sad because usually they would be able to help by using a machine such as the Bird or something to give me a break, but as my lung resembles a colander that isn't an option. If you are running and getting exhausted, you stop, but you cant stop breathing, so you just have to ride it out.
Not being able to breathe, even when you are lying completely still is not a nice feeling, and I sometimes get a bit panicky and/or upset, which is completely ludicrous and quite possibly the most counterproductive thing I could do, except for getting up for a brisk jog or something. Deciding this was rediculous, I did what most people would do when they are feeling a bit tender, I called my mum and she came whizzing up and "carried me around on a cushion a lot" (that's what she always says she will do when I am poorly, havent quite worked out what the medicinal implications are supposed to be but it sounds like fun) and of course my breathing improved over time and by the evening I felt much better.
I have this strange sort of logic worked out in my head that when I have a really bad day like that, it means that it is all the more likely tomorrow will be a good day. Probability experts please dont correct me on that one, I like my random mathematical interpretation, and anyway it turns out I was right. Today has been much better, with a mild breathlessness episode around midday, but I slept it off, and then I went for a walk with the physio and walked the ENTIRE LENGTH OF THE WARD (yes I am shouting that as I am rather chuffed). It was just the most fantastic boost for my morale, and it makes September 3rd seem much more achievable. And it wasn't merely walking, it was walking in a comical manner, so as to stretch and reawaken various muscles which have withered away to nothing over the weeks, including walking on tiptoes, lifting my knees up and attempting to kick my own backside. I should be paid for my entertainment value really. The moral of the story folks is this: when it seems as if the day couldnt get any worse, plough through it and focus on the fact that it means tomorrow must be a good day!
Update to say there is no update!
1 week ago