30.6.17

Confessions...


Howdy people. I'm currently sat in bed watching 'Riverdale' on my iPad whilst getting over my morning pain/sickness fest. I can't quite describe to you what my mornings are like nowadays and whether people will really understand how difficult they can be for me and certainly difficult for those that have to deal with me as there really is nothing anyone can do to help me with it at all in the morning. It's a strange set of affairs because I wake up and feel pretty good;- chest feels pretty clear, breathing is even and level, I've got a generally happy demeanour going on. I tend to take pain meds immediately because if I don't this generally "good" feeling will only last so long and that is when we slowly progress through the morning with a routine of breakfast, tea, medications, nebuliser, inhaler, more meds, physio and so forth. Now since my last clinic they altered things round a little and it buggered up my body a little bit so at the moment I'm suffering with a lot of pain which during the morning will be building up and up and up whilst I have to do things. As I obviously have to use my lungs more this then just makes me the most tired person on the planet with an entire chest and torso screaming at me that they hate me, trust me I hate them just as much in those times. 

I do have to apologise though my being 'ill' doesn't really have too much to do with why I haven't blogged as much recently and it's certainly not through lack of content as in my mind I have SO much to write about and genuinely when I have a thought about something I'll alway be like "Oh, I should really blog about that..." then the thought or having to go upstairs to use my iMac hits and there is no way I'm going to move to sit at a uncomfortable desk and I'd rather not have to ask Mark to use his Macbook when I'm at his. It was a dilemma that I hadn't really noticed until I really wanted to get it sorted and organised again and get back into writing things down more extensively again and now that means I own a MacBook! I can easily blog when I'm in the mood now as i's more accessible I can do it in bed when I'm feeling crap and it just makes my life so much easier :-). I know I could use my Phone or an iPad but the way the formatting seems to work between devices is weird and changes and I have zero patience or tolerance for technology lol. 

I have been having a really awful few weeks, if you follow me on any of my stuff like, Instagram or Twitter or Facebook you'll be following the pretty happy version of me at the moment what I definitely haven't been putting on there is how exhausted I am, how much pain I'm in, my constant production of phlegm, my thinning hair, my stupidly round face, my red face, the fact my head could probably be used as a tap and my latest body hang-up apparently my new title can be "Stacie: The big flake of Skin" my skin is that dry all the time! It's amazing the side affects that drugs seem to produce in a person and the thing is half of the drugs are drugs combating the side affects of other drugs which in turn have side affects, so essentially most of the time you're having to choose which your lesser of evils is or you just have to put up with it.   

I'm really not complaining though because I'm still managing to do amazing things within my limited means and we're still planning things so I feel like life is good I just wish my mornings were't dragged down by being ill, I want to be able to hit the day running, figuratively anyway, get out and seize the day without being dragged down with feeling sick or by experiencing excruciating pain. I suppose the reason I've titled this blog 'confessions' is because a lot of the time I come across people in my life and they generally know the situation what's going on with me but they've never met a dying person before, they aren't sure what to expect so I generally give them the best they'll probably get when it comes to that type of person. I stick my smile on my face and I pretend that I'm not feeling like rubbish and enter the world where I'm not ill and I'm just me. Firstly it's nice to pretend for me sometimes that I'm not the dying girl and it's nice to make light of the situation and I also make those people around me much more comfortable because people generally don't know what to say, how to approach you and whether what they are saying is offensive or not so if I start by saying "I'm fine... I'm good..." If I lead the conversation it generally invites them to be comfortable with me and realise I am a normal person who just so happens to be dying. There is a problem with this though because ultimately people then don't understand the extent of your illness, they assume because you are all happy and normal around them and getting on with things that things are much better than they are but this is what I choose on the whole, the important people in my life see the bad times, they see me cry when the pain gets too much, they support me through all the difficult moments, they know when an "I'm ok..." is actually a real ok. So I suppose what I'm saying is when I've posted a picture of a smiley happy me, or a day out just think about the process that went to getting to that point;- Was there a rest day the day before to allow it to happen? Am I actually feeling beyond awful and covering it with a smile? How many pain meds am I on to get me to be there? How many anxiety episodes did it take to get there? This and so many other questions lie behind everything. 

With my new MacBook purchase though it has meant I have finally managed to give my blog the little update it has been needing, whoop! So finally 2 years after my transplant I have updated my "About Me" page, it's only small but clearly explains the goings on and what has happened since. My "Related Pages" page has had an update and seems more appropriate to these days and finally I have sorted out my "Bucket List" page. Now I have a separate section on it now which is for Chronic Rejection me because there's a lot on the list that was obviously put there assuming I could do it but now it's simply impossible so now I need to think of new things to add to my list the my chronic rejection lungs can do :-) 

As always, thank-you for reading and chat soon
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1 comment:

  1. Thanks for sharing.
    Keep in mind that you get to choose what you say and what you do; allow others to get to have their own opportunities to come to grips with what's happening in your life. No need for a sugar-coating; honesty, without whining, criticism or judgement, seems to be the best idea to me.
    Teresa
    Sending love and prayers your way.

    ReplyDelete

Thank-you for commenting <3