I've not been feeling great over the last few days but so far it seems to be the opinion that I have some kind of flu that due to how my lungs are, is lingering and being stubborn, my CRP was fine at 9, I finished home IVs a few weeks ago so the doctor said this could be the tail end but we can't justify more antibiotics yet, but white cells were high showing that my body is trying to combat something, we just don't seem to know what right now so I'm being a good girl and sitting tight until we can figure this out. The hard part is that I feel rough and I have these brief moments of thinking "Can I honestly do this anymore?", but even the doctor said that wasn't in my nature even though so many people would have given up long ago, he told me to keep going and hang in there until we can work out something long term.
The problem we have is that right now I am on high doses of most of my medication and there isn't really a whole lot of wriggle room so we can't just bump my meds up and hope for the best. Last year we did have some big changes and they have made a difference. Since starting on Zomorph and Oramorph, my life has been less uncomfortable but the problem with morphine is that you have to be extremely careful with it. Too much can and will kill and at high doses, it could end up with my lungs not working properly but right now, at the stage I'm at, my lungs are weak and there's not much we can do as yet. I did some lung function tests recently and they really showed what my lungs are doing, it showed that the consultant who should have done something about this in August last year was wrong and the result that things have spiralled worse than they should have been allowed to but that is something entirely different and complicated. That and I don't want to publish it yet until we know where we stand fully.
I am planning a trip of a lifetime for my 30th birthday, I know we have 2 and a half years and a lot could change in that time, to Japan. I have always wanted to go and even if I have to go with a wheelchair and o2, I am going to go to the Square Enix shop if its the last thing I ever do! I have always loved Japan and the culture, such an incredible country and so advanced beyond us. My favourite things are watching anime, reading manga or playing anime style games like Pokemon, Phoenix Wright and of course my most loved game series of all time Final Fantasy (and Kingdom Hearts respectively which is like a mix of Final Fantasy and Disney, sounds mad but its wonderful!) as well as Hello Kitty, Gudetama and other things.
The next week ahead will be wonderful though, I'm not going to go in to detail but getting to spend precious time with someone is important to me. I'm going to enjoy it and I have ideas of things to do and its going to be better for me than any medication ever could be. I want to make as many great memories as I can and then they will always be there for the times I need to remind myself that there are good times as well as the bad times. I have always tried to look on the positive side of things and even when its not been easy, I have done it and I am still doing great. I never let this beat me and there were times when it would have been so much easier, but not as rewarding.
I guess in life it is about the things you're willing to fight for.
8 months ago