22.10.16

Exhaustion

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Hello lovely people. So I finally finished my IV's and everything went smoothly with them, my line lasted the entire 2 weeks which if you know my history with long lines they generally only last as long as a cannula so you can understand why I'm so happy with that. Towards the end of the two weeks though I started to develop a cough which was producing a lot of phlegm which is quite unusual for me because I can't normally cough up my phlegm at all and that's exactly what I was doing, it was a  lovely shade of dark green which indicates infection, so I was a little worried especially as I was getting mild temperatures as well. The morning of my clinic appointment I woke up around 4am and went for the loo and when I went back to bed I felt like I'd pulled something in my back, I assumed I'd maybe coughed too hard or something and thought very little of it, over the next few hours it got worse and worse and started to spread to the other side of my back. By the time it was time to wake up I was in agony I managed to get my legging on but by this point I was crying my eyes out from the pain and telling Mark there was no way I could physically get changed. I coughed and then I was in even more tears and had no idea how I was going to get through the day not being able to cough. Mark managed to calm me down and get me changed but I've honestly never felt pain like it, it was awful! Now I'm good with pain I didn't cry one when I had my transplant because it just didn't hurt so when I say something is painful, it is painful! 

We finally managed to make our way to Papworth where we met up with my parents and they both thought I looked like death. I saw the nurse and told her there was absolutely no way I could do my lung function that day because I physically couldn't breathe in enough to be able to do the test. Luckily they said it was fine because at the moment my lung function really doesn't mean too much unless it dramatically falls or dramatically increases. I went for my x-ray and nearly collapsed when I was asked to stand because the pain was that intense and when I got back to clinic they put me in one of their back rooms because I was just so out of it and ill. I finally gave in and my parents and Mark ask for pain meds for me because I just couldn't handle it anymore. I had to have a echo and whatever little difference the pain meds had made the echo eradicated so when I went in to see my consultant they gave me more and basically I was a dopey weirdo from then on lol. I don't really know too much of what was said in the room but I do now. So basically I have pleurisy which has been caused by the infection in my lungs. The IV's I was on have shifted all the gunk in my lungs which in turned and inflamed my lungs and now they're rubbing together which is what is causing the pain, it's known for being very painful, so over the next week I have to try and shift as much of the stuff in my lungs as I can and hopefully that means my pleurisy should ease. Also another side affect of all this inflammation has meant I have completely lost my voice entirely. it's very quiet for everyone in my life right now LOL. 

I'm okay though. I'm exhausted though all this coughing is just so draining. I know what tired is, I've often complained when I'm tired but what I'm currently going through is complete and utter exhaustion I forgot what it was like. Luckily the doctor has put me on bed rest which right now is just completely what I need but I've also promised my consultant to do two 20 minutes on my pedals that I do whilst I'm sat down. Which I've been managing and I'm so proud of myself. I've also been told to use oxygen when I've done anything physically demanding, so after I've climbed the stairs or had a bath or after my pedals which seems to help get my breathing back to a normal rate faster and I really appreciate it, it feels like it's not so hard if you know what I mean. 

I feel so lucky though that I've had Mark and my Parents though, they are my absolute rocks at the moment. I know I always say how I feel like it's something I should be doing by myself and I know I could do it by myself if I had to but I'm so grateful to have them at the moment. Everything is just so hard right now and they make things so much easier for me. I've spent the past 3 weeks in Norwich with Mark and he got up early every day and did my IV's with me, made sure everything was ready for me, ran me baths and just did so much for me. My parents are amazing as well, they've brought me this annoying bell for me to ring whilst I have no voice to get hold of them when I need them and what parent would give their child a service bell?! Crazy people. I do absolutely appreciate everything they all do for me though because at the moment things aren't easy and it's nice that have them lean on. I just hope it's not for too long because I do feel bad that I'm having to rely on people so much. 
 
As always, thank-you for reading and chat soon
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