Yesterday, I learnt what this means: management, not cure.
It is something that I heard on day 1, after being diagnosed with IPAH. I understood that there was no magic pill to take, no operation that could be done, no nothing that could make it go away.
There is medication - more now, than say, even ten years ago - and it helps keep all the bits-and-bobs working; helps keep them from deteriorating further, at least. But, they don't repair them; don't make them as good-as-new. But yes, they have surely improved my quality of life: I no longer feel faint after walking up a slope, or a few steps. I have not had a day of breathlessness since being on them.
But yesterday, I realised that I am here, and comfortable, because my medicines work.
If I stop taking those meds, however, I will stop being well.
The penny has finally dropped.
And, it has taken me close to six months to realise this.
Yesterday, I finally understood what it means. And, yes, it is upsetting. I've not been feeling very well for the past few days, and that always makes me down. Tears so ready to fall, behind my eyes.
Yes, yesterday was the day that I understood what it really means to be ill with IPAH. Yesterday, I reaslised that I am now probably the best that I can be, and that eventually, I will not be so good. Bummer.
Yesterday.
Talk about someone being a bloody slow learner, eh?! Hahahaha.
Yes, yesterday, the coin dropped. I have to make the most of my life, however long I have. I won't say I am sad. Maybe a little. But, I am scared - about what may lie ahead, and that maybe it will be less-than-wonderful! Hahahaha.
Yes, yesterday. I still can't decide if it was a good day, or not.
