28.1.18

A REAL catch-up...


Hello my lovely lot. 

I'm here finally. I feel as though I haven't sat down with you [my lovely little space] for so long, and I think mentally I really haven't not for at least 9months or so. I think I got told I couldn't have a second transplant and I just sort of went into a survival mode I guess and I couldn't sit down and verbalise much at all I didn't want to, you talk about all the ins and outs with everyone around you and at the end of the day I just couldn't be bothered to write it out as well and I think a lot of what I wrote would have just been really annoying "Why me?" "It's not fair" blah blah blah... That's not interesting for anyone really is it and it's not like anyone could actually do anything about it anyway. 

So essentially I feel like I've gotten to a point where I'm okay to just relax a bit and chat about it every now and then when I want to give it a go. It's been difficult, life is hard not just sometimes but always and there is never a break even when you try and go on a break, like now for instance Mark and I are 'away' on "holiday' but not the way most people do it. "Holiday" takes some sort of herculean planning on Marks part to get us anywhere and for it to appear easy, it never is! We've managed some amazing trips this year though and they really truly have been amazing, I've loved all of them individually for all there different aspects, I specifically loved Snowdonia just for it's relaxed-ness and Cologne for it's Christmas goodness. I find the city trips we go on can be very busy and exhausting but so worth it but it's why we really try and get a good balance of busy tourist trips and relaxed calm trips. 

I had a clinic appointment this passing Thursday and I think the emotion I feel the most at the moment it confusion and just a sense of befuddlement. I'll explain... 

I'm so confused as to why I am still here. Do not misunderstand me I am utterly overjoyed that I'm still here and planning trips and managing to enjoy life and all it still has to offer me but how is it that I am still here able to do all that?! Last year it really truly felt like 2017 was THE YEAR it was concrete set in my brain 2017 was the year I was probably going to die. I was going to sleep wondering if tonight was the night? Were my parents or Mark going to wake up to a cold lifeless me unaware that I had gone in the course of the night? As the year progressed further and further though it became apparent that i was still maintaining my stability and my decline had slowed to a almost halt. September brought about the arrival of my "rib/muscle issues," they just kept pulling! We now know that they actually might have been lots of mini fractures but every time I had clinic meant I wasn't able to do a lung function because I couldn't take a breathe in to do it properly. So for the past 3/4 months we've been unaware really of how stable I've actually been we've just known I've been plodding along. My clinic appointment on Thursday brought with it my first Lung Function in 4 months and amazingly it was 24% so still not amazing when it comes to numbers but better than September and certainly better than I had been expecting it to be. Numbers wise my weight is stable and actually at a nice healthy level for me which allows me some leeway if  I were to get ill and lose some weight again, my heart rate has managed to settle itself and actually is sitting at more like 110/115bpm now which is wonderful, BP and O2 are doing good and everything is stable which is great. The problem though is ALL of this teeters on a knife edge.

It's a balancing act which we all have to live with because if even one thing decides it wants to bugger up it screws with the rest of it, if I get a minor cold or infection that could be me done for. It's living in constant fear that something might happen. We also live as though each day were our last or try to at least but the question really is how long can some-one realistically live like that? Financially first off, you can't afford to be doing absolutely everything you want to do in life, that would be insane and ultimately make you bankrupt which in my case would be fine if I had a general idea of when I was going to die LOL but you do have to pace yourself or you could end up in a situation where actually you're still alive with no money and that would be a total bummer. Mentally though living as a "dying" person is so difficult! You're exhausted all of the time, everything is difficult;- getting changed, washing yourself, brushing your teeth, putting shoes on, picking things up, bum shuffling up the stairs, doing your make-up [if you can be bothered] just everything is difficult but I feel like I've adjusted somewhat and gotten more used to it but that's only because of the people who surround me, Mark pretty much does everything for me and I would arguably say he has a tougher roll than me. I just wish it was a little easier sometimes and I wish it wasn't such a knife edge that we constantly have to live on. 

I suppose one of the biggest "things" recently has actually been the acquisition of my WIG! Now this is something that makes me sad and excited in equal measure. I'm so bereft at the loss of my hair you really have no idea I won't drone on at you but I refuse to accept statements of "but you're hair is beautiful Stacie" "You can't even tell" "It'll grow back..." All of these will fall on deaf ears with me and won't be acknowledged at all. I'm calling a spade and spade and I am on the road to bald town and it well and truly SUCKS! However my wig is beautiful and I just love her! She looks exactly like my old hair and she really makes me feel like my old self. A lot of people don't even notice when I have her on they think I've just had my hair done. I'm so impressed because I was so worried that it would look like a wig and people would know but she is amazing! We've ordered another wig as well which will be like my "going out" wig and that one is just a lot more styled with curls and the like in it and just looks a bit more fancy. I mean if I have to be bald I'm pleased such things exist to help. 

A New Years aim of mine is to blog more regularly for you guys and I guess this blog is the start of that I feel like we're in a good place, you know where I'm at and we just go forward from here :) 

Love always            

As always, thank-you for reading and chat soon

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