Firstly I'd like to clarify this blog post by first saying how much I love my life, have loved the life I have had and plan to continue to love the life I continue to lead but this may come across a bit moany and I do understand that and I hope that you will be able to look past that and not see it as a moan but as more of a reflection for myself and where I am/was with myself at this point in my life.  

Lately I have felt somewhat removed from people, things, events, life in general I suppose. I enjoyed mine and Marks getaway to Snowdonia so much because it was like I was legitimately removing myself from everything and getting away from everything and it was accepted because it was a "holiday." You're 'allowed' to remove yourself from society and the world as long as it's under the guise of relaxation and holidaying, when you're dying and don't want to interact with the people or things or just simple want a mental break from it all, that's seen as retreating in on yourself, you're becoming depressed, are you really okay? You're not yourself anymore... blah blah blah and so on. 

I am becoming slightly removed from the world and I know that I am, I am in no way going to apologise for it because I go through my phases and this is a phase, I'm unsure as to how long it will last but for now it doesn't mean I'm depressed or sad it just means really that I'm unable to deal with seeing other peoples problems. Selfishly at the moment I'm only just about dealing with mine and they actually aren't nearly as bad as they could be. I was looking back on my photos on my phone today, you know sorting through double photos and accidental photos that really didn't need to be there all that stuff and this time last year everything was terribly and horrifically frightening for me, I knew nothing everything was a mystery and I was under the impression I may die at any moment, it was an extremely scary time for me. Only 6 weeks before that I was riding a exercise bike in my bedroom trying to get my lung function up a bit. It's really quite incredible to watch my decline through the camera roll on my phone, amazing and so utterly devastating at the same time. 

I've lost so much in the past 14/15 months from Lung Function to Hair but mainly an extended life that I thought I had been given and I fear I have not let myself actually process it entirely, be that through fear or just putting my head in the sand I don't know, how can you process such a thing without the enormity of it drowning you in sadness? I understand my position in life and I have known for the longest time that my time on this earth is much more limited than those that surround me but when it's actually confirmed to you that, that is the case how do you react to that? Do you say "Oh well I already knew I wasn't long for this earth" or do you panic because everything you've been saying for about 20 years has been SO on point it's unreal whilst everyone else has been saying "Don't be so silly Stacie of course you won't die" or "You'll outlive us all." I don't know I'm just saying that I guess I feel like it's okay for me to be a bit more removed from things at the moment and not feel bad about mentally figuring out things for myself. I feel so lucky that I have my mum and Mark to unload my mental and emotional baggage onto as well (Not sure how willingly on their part lol) because otherwise I'm sure I would explode they are literally the only two people who understand a tiny bit of what is going on in my head at the moment. That adds extra pressure as well because I want them to understand as well how much I appreciate what they do for me and sometimes I can come across passive aggressive, stressed or just a little bit angry or impatient and that's hard because it's never normally the case at all. By the way I'm totally aware that anyone I come into contact with and even Mum and Mark would never ever describe me as any of that even when I think that's potentially the vibe I feel like I'm giving off. 

I guess I'm just going through a bit of thing at the moment I'm not really on social media so much at the moment and just finding "things" a bit mentally draining and it's been over a year now dealing with being ill again and I think no matter how long you have to "get used" to something like this it is still so hard to deal with 24/7, there is no break. There are better days but even on a better day I'm still in a wheelchair having to be pushed, I'm still doing nebulisers, inhalers, medications, pain medications, physio, hospice care... all these things just to keep me stable and that's not even to improve me that's just to keep me going. So as much as I enjoy and love my life and love the people I have, I am still having to lead a life knowing that I have to live for my better days I'm not living with the expectation of getting actually better and I've been doing that for over a year now and I do wonder how long I can do this for? I don't know. I know I'm stronger and have more will power than possibly anyone I know but that doesn't tell me how long I can do this for and that's stressful and worrying for me. Too much information can be damaging but then not enough can be equally so it's getting that in-between and I think I have it right I just have to let myself go through this phase. 

As always, thank-you for reading and chat soon

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