Sometimes I think about how strange it is that the same illness can affect people very differently. Why is it that I'm well enough that I am able to do what I want to do, while others with PH have had to change their lifestyle a lot? Or even worse, have died? Sometimes it just feels so unfair that I am where I am now despite having PH, but then I am so grateful that I am! - perhaps it's more that I wish everyone else was in a similar situation? I don't believe that anyone deserves to be ill, whatever the illness may be.
It wasn't until I became ill that I really got to understand what it means to be chronically ill - there is no let-up, it's constantly there, not to mention all the hospital visits. And, even for me now, there are things that I need to do differently; there is always medication to take with me whenever I go away, even if it's just overnight, and considering if (and how) I will manage to change my infusion while away. It can get quite stressful (and expensive!) if I'm honest.
But, at the same time, I am still able to travel in the first place, and having the job I have means that I can be flexible with my time so that appointments don't need to affect my work that much. (Maybe I will talk about this in a future post...)
See, this for me is the weird thing about being ill - why oh why is it that certain people do well, while others do not? I'm grateful that I am able to live my life, and know that I am fortunate to be able to do so, but I would rather not be ill and, especially, I would rather not have the line - believe me, if I was told that I could try something else in place of the IV, hands down I'd opt for that!. And, I don't want anyone else to be ill or die either... well, the bottom line is that I don't want illness to exist, I suppose!
Does that make sense? I hope it does!
Maho