30.6.18

Gathering Frustration...


Okay so I'm not a moaner I never have been not really and if I do/have moaned then there's usually a very good reason for it. I know some of you reading this will be wondering why there has been a severe lack of blogposts on my part over the past say 9 months (estimate.) I just haven't been able to express myself to you guys fully I suppose, or maybe that's wrong to say I  know what I want to say a lot of the time and things I want to talk about but it would just appear like I'm moaning and I don't just want to moan at you that's not who I am but my situation certainly brings out that side in me sometimes. At the moment this is what I need and i guess I'm just pre-warning you that this post could appear moany so if you aren't up for that today then carry on no further. 

I sometimes tell myself off when I feel a little sorry for myself because there's part of me that thinks I should have no right to complain at my situation because I am still alive albeit living with Chronic Rejection and I did get my transplant so what do I have to complain about? Well I've decided I have every right to moan because you know what my life on the daily is bloody hard work! 

- I live in constant pain.
- I wake up everyday feeling sick.
- I'm on constant pain medication.
- I'm on a strict regime of pills, nebulisers and physio.
- Walking more than 10 metres is near impossible without having to sit down and rest.
- I'm coughing so much phlegm it's disgusting. 
- I have no energy and constantly need a nap.
- Doing something as simple as brushing my teeth, getting changed, bathing, brushing my hair makes me out of breath.
- I now need a wheelchair whenever I'm outside. 
- I currently have stomach issues that nobody can figure out and don't seem that inclined to either.
- Most recently I have a infection that doctors seem to have decided isn't an infection and just "normal" phlegm [roll your eyes here.]

Okay so there's a few of the things I deal with on a daily basis and these by no mean, means I don't enjoy my life, I DO! I really do. Mark goes above and beyond when it comes to making life fun and enjoyable for me and we really do some fun trips like to Edinburgh, Cornwall, Paris, Rotterdam, The Lake District and so on, lovely days out and even just a trip to a lovely pub garden for a drink, or a cafe for a cup of tea is nice for me but that's the thing sometimes those things are made impossible by my body. Sometimes we book things which we then have to cancel because I'm too ill or we'll be on a trip and I'll get poorly whilst we're there and therefore the trip becomes more about resting where ever we're staying. 

I guess my frustration has built up and come to a bit of head this week because I had a urgent clinic on Thursday because I have my lung infection back after having only been on IV's 4 weeks ago and in combination with this horribly humid weather my breathing has been getting worse and I've been sleeping A LOT. Now I admire Papworth and my Doctors for everything they've done for me and still continue to do for me but I felt somewhat swept to one side on Thursday. I felt like I was telling them how hard I was finding things and all I was really getting was "There's only so much we can do..." and I totally understand in my situation there is only so much they can do but I wasn't asking for them to make me "better" because we all know that's impossible but I got the impression that, that was what they thought I was asking for. I wasn't. I just want this infection to go away to feel how I felt pre infection of 6 weeks ago I wasn't asking for miracles. We all know that with this Chronic Rejection stability is the vital thing and whilst I have this infection I don't feel stable and that is unnerving for me and when one of your doctors decides to state the stat that even if the transplant had gone as planned the average life expectancy is still only 5 years, I'm not naive I am fully aware of this fact but it's not something you need reminding of when you've just hit your 3 year transplant anniversary, tact comes to mind. 

At my clinic they also decided to tell me that they didn't actually think it was an infection and possibly just inflammation in my lungs and I understand where they are coming from because it's hard to justify putting me on further IV's when my body doesn't seem to present in the normal ways, my x-rays never show anything, they never hear anything on my chest even though I'm coughing up tonnes of green phlegm, my O2 sats are always normal and everything would "appear" to be fine. That's the way I have always been though, I never get temperatures even when I had sepsis I didn't get a temperature until they put me on antibiotics to treat it, I put 12 kilos of fluid on without anyone noticing because it just didn't appear anywhere on my body, Doctors NEVER hear anything on my chest ever! For as long as doctors have been listening to my chest they never hear anything. I guess what I'm saying is I'm worried that by disregarding my infection and deciding to treat it less severely than an infection that it might lead to worse things. 

We didn't leave clinic completely deflated though we aired our worries and I certainly feel like they listen to me and always allow me to air my concerns and certainly take them on board too and we did leave with a "treatment plan" to try and help which I felt better about and I also do understand we can't just stick me on IV's willy nilly as my body could get too used to them so I am happy to give this a go. I just sometimes get the impression that they did the transplant and the whole chronic rejection thing is just a bit of a hassle for them I think we're all still surprised I'm still here but here I am and therefore it looks like they're going to have to continue to deal with me and my odd and strange body. 

I'm trying my best though, I am resting thoroughly, I'm doing my meds and treatments religiously and hopefully soon I'll find it's a making a difference as long as I can clear what's on my chest and I think once the weather changes and cools a bit I'll be able to cope better :). 

As always, thank-you for reading and chat soon

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