17.11.16

Yourself...


I think I'm settling into the being ill thing again. Not in a 'I'm okay with it' way but more that we kind of have a routine now and I'm getting used to that and everything feels a little more settled. The doctors keep trying to extend my clinics to 3 or 4 weeks now that I'm more stable and every-time I decline because I like the routine I have with going every 2 weeks. For me the 2 weeks is enough time away from the hospital that I don't feel like I'm there all the time but close enough that if something starts to feel weird or strange or just off I know I haven't got long till a clinic and that is something that is really reassuring for me. Also I'm spending 50% of my time at my boyfriends and 50% with my parents and it just sort of works nicely with that as well.
 
Honestly I would say the 2nd time around is proving more difficult than the first time around and I wasn't expecting that. I have always said and will continue to say I would do and will do transplant all over again without hesitation, it was the best decision I have ever made in my life, I didn't however anticipate the readjusting to ill life and how hard that would be for me. I never factored in that I would have had a "break" my body got given 11 months rest bite so it found out what a bit of normal felt like and therefore forgot what dying lungs felt like. That's okay though and it's something I'm trying to adjust to physically again but also mentally.
 
The thing I think I'm finding hardest particularly this time around is how little I'm able to do myself, I don't feel like myself a lot of the time and I'm relying heavily on people to help me with things. In particular I find washing my hair really hard work the past three times I've washed my hair Mark and my Mum have ended up having to do it for me. Now luckily I'm not someone who's ever really been bothered about that type of thing and enough people have seen my boobs in my time that having to have someone wash my hair isn't a massive big deal, it's just the fact that they're having to do it if that makes sense? It probably doesn't to you but I don't want the people I love to have to do these really simple everyday tasks for me and I know I would do exactly the same for them if they needed me to I just wish it wasn't necessary. Getting changed is getting harder and especially at the end of the day or a day where I've done a fair bit for me so people helping me get changed is becoming more of a thing. I also just feel like I'm being stripped of myself a bit. The exhaustion is just so overwhelming most days so clothing choices for me have become limited: I need easy to put on, baggy so I don't have to wear a bra and I just don't have the energy to put make-up on most days and I know these sound trivial and they are really but I like to make an effort with my appearance and not look sick, I constantly feel the need to apologise when people see me with straggly hair and no make-up. It's ridiculous but it's something that I like to do for me and at the moment it's just not happening unless I  really, really have to.

I said the other day how I wished I could go back to normal and then that made me quite sad because I realised that me being ill is my normal and in actual fact the past year has been completely abnormal for me albeit wonderful, so I should technically be wishing to go back to abnormality and isn't that strange? Whatever the case I just know I want to feel myself again or at least want to draw upon past Stacie to be able to get through this again because I'm not entirely sure how she managed it.

As always, thank-you for reading and chat soon
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14.11.16

Bernice...

Bernice and my friendship is not a tale of friends who have known each other since they were 4 years old and passed through the years with one another, through those awkward teenager years, we don't have old school stories to tell you a part from our own separate ones, in fact we've only known each other since February 2013. That's only nearly 4 years but I can quite honestly say Bernice is one of the best and truest friends I've ever had. 

In February 2013 both of us had been on the transplant list a number of months by this point and ITV were doing a campaign to try and raise awareness for organ donation called "From the Heart." Both Bernice and I were involved in the campaign, I saw Bernice's news piece and thought I'd be a bit stalkery and I found her twitter where I just said you know an encouraging (in my mind lol) "well done" on it. We started chatting and basically I guess the rest is history, we became great friends. Bernice was one of the biggest supports for me leading up to my transplant and was some one that I turned to a lot. I like to think I helped a little when she got her transplant too lol. It doesn't feel like I've only known Bernice for 4 short years but during that time she got her transplant, met her boyfriend who then became her fiancee who is now her husband!!! 


When Bernice asked me to be her Maid of Honour I knew it was a day I had to see and it was a day that I actually thought I'd get to see when everything was running smoothly, the past few months though brought that all into question I had no idea if I could make it because firstly they were meant to be getting married in 2017 and without a second transplant I'm pretty sure that was going to be a no no but then luckily Bernice and Scott decided to bring their wedding forward due to other circumstances and whatnot and when Bernice told me it was to be November 12th I was determined that was a day I could make, no matter how I felt that day I was going to see my best friend walk down the aisle and marry Scott! I definitely wasn't a traditional maid of honour because I couldn't do all the running around that I was meant to do and help with setting up and all of that stuff but just being there and being able to witness my best friend on one of the most special days of her life was amazing for me. She looked so beautiful, she picked the nicest girls to be bridesmaids and they just made everything so lovely for her when I couldn't do the things I would have loved to have done. The day was just so special. Scott was in floods of tears and at some points it didn't seem like he would stop, you probably had to be there but looking at Scott and the way he was you would never be able to deny the love he has for Bernice. The fact Bernice had always said she would never get married and was adamant about it shows that Scott had to be something amazing to change that and I'm so happy she found someone that was able to do that.  


I took part in the entire day from start to finish and I'm so impressed with my body for coping with it. I wish we could do it all over again for her because it was just such a joy to see Bernice so happy, Bernice is one of those people who deserves all the happiness the world. They say you can't pick your family but you can pick your friends, well Bernice is certainly like a sister to me so I think you can pick your family if you want to.

As always, thank-you for reading and chat soon
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29.10.16

"Peeking..."

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So things are... okay. I absolutely refuse to say we're turning a corner because I'm not sure we'll ever turn a corner until I get my transplant but we're peeking I think, we're peeking around the corner. Last week was awful I felt horrendous and the past week has been exhausting for me. Shifting all this stuff in my lungs has been so difficult, I've never been good at shifting stuff I get so tired bringing it up I usually find I can't get it up enough to actually spit it out and doctors get frustrated with me because they obviously need to see it and test it, so this week I've been managing it at least. I sound so disgusting and I've felt like I've been drowning at some points this week but thankfully I think we're getting somewhere. I'm coughing up a lot less stuff and the colour is changing and is a lot less green. I'm back onto just paracetamol and the pain is pretty much gone which suggests inflammation is down as well as the return or partial return of my voice. 

I'm never going to say we're moving forward or "I'm getting better" but I feel like I have my stability back even with the Pleurisy and the infection I've still been managing to do my 20 minutes on my pedals which I'm actually super proud of myself for doing. I think I missed one day and that was because i felt terrible but other than that I've been really making sure I've been doing the pedals because I know how important it is that I keep it up for when I get my transplant. 

Admittedly I am a little worried because whenever I seem to take a step forward I end up catching something or my body decides to do something and we take two steps back it's just kind of like we never sort of get anywhere it's like we're constantly playing catch-up and that's a bit frightening for me I guess because there's only so many times you can take a step back really before there's no where else to go. I just hope for the moment we can keep this level of stable-ness and I can stay well enough for Bernice's wedding which is my current "goal," it's just unfortunate that what I've found at least with this is that I can be ok one day and then within a few hours just be completely not okay, so we will see anyway. 

I'm going to be positive Stacie though and say it will last though and hopefully on Wednesday at clinic they will say all is hunky dory and I can try and actually get some stuff done! If you can actually believe it it's nearly November and I haven't actually started Christmas shopping yet and it's stressing me out beyond belief! LOL  

As always, thank-you for reading and chat soon
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