16.7.18

Surviving Summer...


Surviving Summer.... Basically I'm not, lol. 

Okay so I am obviously surviving to an extent otherwise how the hell am I writing this? It is certainly hard work though. Britain just is not made for heatwaves and neither are the people that inhabit the place and then add in a chronic/terminal illness and really there just is NO coping whatsoever. As I have mentioned on many a occasion I don't ever complain about colder weather because it then gives me the right to complain when this happens and boy have I been complaining but not just for the sake of complaining because I just really cannot cope with this weather and I'm finding it so, so difficult daily. 

I am trying though and Mark is really helping even though he is finding this weather just as difficult to deal with. Unfortunately one of my drugs has a side affect of excessive sweating and it just so happens for me that seems to all come out of my head, so any photos of me at the moment are literally of me with my hair up because when it's down it just looks like I've washed it it's that wet, it's gross! So any photos with my hair down are usually a selfie and probably just after I've washed it and it hasn't had a chance to get sweaty wet yet LOL. I'm trying to smile my way through this but I genuinely am finding this weather so difficult, moving around just gets me out of puff and I'm so tired all of the time and all I want to do is sleep. I know I have chronic fatigue but this is just a level of tired I have never experienced before in my life. 

I had clinic on June 28th, so a couple of Thursdays a go and I didn't get the best news. I've been putting a lot of why I'm finding things so difficult down to the weather and of course it is definitely playing a big part in my coping at the moment but I had a CT scan which I'm really pleased they decided to do but the CT scan showed a few things which aren't unexpected especially with the Chronic Rejection. So I was told I have a small Pneumothorax (posh medical language, look at me Oooo lol), which for those not in the know is just a small pocket of air in my lung or commonly known as a collapsed lung. However in me it is just a very small pocket at the top of my right lung that we can leave be as it would probably cause more drama to fiddle with it. We looked at my CT from last March next to this one and the comparison is really quite obvious there is much more scaring in the lungs, infection is swarming the place and although my Aspergillious cavity is smaller it is however right next to the wall now and full of crap. My Dr asked if I was in a particular pain in my chest of which I can't say I am but I do take a heck of a lot of morphine painkillers so potentially wouldn't know anyway but apparently the fact that my aspergillious cavity is pretty much on my lung wall means I should be in quite severe pain from it... At least that means my pain meds are doing their job hey?! LOL 

So basically I have deteriorated, whoop. I'm okay about it though as it has been TWO years since I was diagnosed with Chronic Rejection and it would be stupid to think I could go on forever without at least a little bit of deterioration. I think sometimes though people think that when I say I'm stable that, that is a good thing and the thing is it is but it isn't as well. Yes to be stable is good but I think people forget that I'm stable at a extremely LOW level of health therefore I'm still battling things that normal people would consider awful and probably wouldn't be categorising them as being stable. I guess stable is just my word for people to say I'm not worse but still battling on. 

I think whilst this weather continues I would not consider myself stable at all as I'm also still battling a infection which drs have decided is going nowhere so now I just have to measure my level of coping with it, so when it gets too much I will opt to go on IV's which probably won't get rid of it but may dampen it down enough that we can control it but once again I have to be really careful that I don't go on the IV's just willy nilly as my body will get too used to them and there is no alternative after them. So persevering for the moment. I am sure though that once this weather cools a bit I will be coping much better. In the mean time though I'm basically living in front of our Dyson fan which is already worth its weight in gold!    

As always, thank-you for reading and chat soon