Tuesday, 25 August 2015

Sheep Hunting...

So the other day, and by other day I mean yesterday, I went to the good old land of Bristol which is only 30 minutes down the road from me with my sister and her little clan of people. We went Sheep hunting or more specifically Shaun the sheep hunting. I never went when it was Gromit who was the main attraction last year but honestly even if I could have gone last year I wouldn't have made it round because I was so ill but this year I decided to power through the fact that I had a cold because surely even post transplant Stacie with a cold is 10,000 times better than Stacie last year. Which fyi I totally am! Excuse my beyond gross appearance by the way I blaming my cold and the fact that the weather was crap :D LOL 



If we are all honest we could not have chosen a worse day to go. It was absolutely pissing it down the entire day, literally it did not stop raining at all, ever whilst we were there. This however does not upset me in the slightest because it meant I got to tick off something on my bucket list which was drum roll please drrrrrruuuuuuuuuuuu.......... I got to walk in really heavy rain! It does not bother me AT ALL that the cold and wet has made my cold worse because I adore the rain and it meant I got to use my heart umbrella which I love also. 

The weather unfortunately did mean we had to cut the day a bit short because we had a very wet couple of little boys and it really was just getting worse the longer we were there but we found a few sheep and next year, if they decide to do something similar, we'll go on a much better day and hopefully by then my walking legs will have caught up with my heart and lungs because guys there was this hill and OMG I wanted to die! I mean my cold was obviously not helping that scenario but even if I had 100% lung function and no cold I don't think I would have coped with it lol! I had Jaydon cheering me on up the hill going "Come on Stacie it's only a little bit further... See it's just this little bit to go... It's just here!" I don't think I've ever been cheered on up a hill by a 4 year old before, I just had Candice laughing at me whilst walking next to me whilst I was swearing and saying "I hate you, I hate you, I hate you!". My legs really did not appreciate that part of the day LOL. It's amazing that I did it and actually made it up this hill and then even further up another hill. It's massively frustrating though I'm just willing my legs to be where I feel they should be, but they are still very much a work in progress it would seem. 

As I said I'm still currently fighting off my ear infection which I think is definitely on it's way out as my hearing has almost returned but yesterdays antics has made my cold somewhat worse and I certainly have spent the majority of today, minus a few mile walk that I forced myself to do, wrapped up in big old jumper with fluffy socks and a blanket and reading Harry Potter because I'm really cool like that. It makes me feel better when I'm ill though so it does the job, who doesn't love retreating to their favourite non-fictional world when they are poorly? Something that would have made me feel much better was if I could have eaten chocolate but chocolate still tastes like crap and right now I'm not sure it's ever going to taste the same ever again *sobs into her imaginary pillow.* LOL Chocolate is a extremely small price to pay for my health but one I certainly never anticipated happening so I've switched to sweets and unfortunately crisps which is a really bad thing and for some reason since the reduction of my steroids I seem to have gained the munchies which I never had even when I was on 70mg of the stuff. So at the moment I could probably eat about 20 bags of crisps and it wouldn't even touch the sides. I'm restraining myself though guys or I'm going to have Papworth "having a word with me" LOL. 

Anyway that turned into more of a babble than I intended I'm sure my next blog will be next week as I have my 12 week biopsy on the 1st September which is actually more like my 13 week biopsy but hopefully if all is good I won't have another one for a while.   

As always, thank-you for reading guys and chat soon
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Monday, 24 August 2015

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It's going to be ramble blog I'm afraid, I don't really know where I'm going with it I just want/need to write I suppose. 

It's been a shockingly awful day for the transplant world today (23rd August). Sometimes it seems that we as a community can go a fair while where no-one seems to be dying and people are getting the transplants that they need, people are still suffering but things are ticking along nicely. It sometimes lulls you into a false sense of security and for me at least I kind of forget that we're all  time bombs waiting for our turn to go off. Those on the list and those of us who have had our transplants too, those of us who have had our transplants have hopefully just delayed or extended the time on our own personal bomb. Then days like today where a baby who wasn't even 4 months old died whilst waiting for a heart and a young girl who only turned 17 days ago died after fighting so hard against rejection, it just reminds me that transplant isn't the magic cure that some people think it is and we still remain in a unstable and uncertain life.

I can't say I've thought about death that much since my transplant besides my occasional jokey references to it, I think I've just been in my little bubble of "I got my transplant, my donor brought me way more time than I had, I'm so happy and thankful" I mean I've probably thought about death a little more when I've been having biopsies because that's natural but then people die and bring you back from your little bubble and for me it's not that I'm worrying about ME dying it's more for my friends. I'm only very close to a very select few people that I talk to everyday or very regularly from the transplant community. I protect myself, so it's not that other people dying within the transplant community isn't sad and awful, it really is, I just have my kind of shield up where rational Stacie kind of comes in to play and thinks people die everyday you know it's life it's what happens and especially with transplant. The problem today is that it was a baby and a young girl and it's a bit harder to rationalise that in my mind. 

I feel like today has taken me somewhat out of my happy bubble, I don't feel so safe, death feels a bit closer than it did yesterday. It's really my own fault I choose to expose myself to all the transplant stuff  and it's hard to deal with sometimes but they are amazing people and there is massive support in that community and it is invaluable.

I do wonder though when or if we'll ever not be have to worry about dying for at least a decent amount of time or think "you know what Yes I'll be here in 10 years" and KNOW for sure that we will. I want there to be day where we aren't plagued by the monster in the dark that is rejection. 

As always, thank-you for reading guys and chat soon
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Saturday, 22 August 2015

Twelve weeks on...

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Twelve weeks ago today a selfless person and family did something extraordinary for me and my family. They don't know me and probably never will know me or my family, I don't know them and will unlikely ever get to know who they were as a person but that person and their family changed my life forever, they gave me a life!

Twelve weeks doesn't really sound like a lot, it's three-ish months, but to me it feels like such a long time. Once upon a time I tried to explain to you the two kind of time zones that we live in whilst we are on the list there's the normal one where life goes at a normal speed and the 3 years when looked at from that perspective was actually not that long. You look at some things you did and you can't help but be like "was that really 3 years ago? It feels like it happened yesterday!" and then there's the List life where time is excruciatingly long, 3 years felt like 10 and you were just waiting to die. I suppose what I'm saying is I'm in a new time zone where my being ill is some kind of distant memory to me when in actual fact it was literally 12 weeks ago, how is that possible?

I'm still restricted in someways but even with those restrictions I feel like I've been living more than I ever did 12 weeks ago. It's so amazing that I can now make plans and do things and even though they may still get cancelled due to illness I don't get upset about it now because I can just reorganise it because the likelihood of me dying before I get the chance to do it now is slim. I used to get quite upset when I had to cancel things because of being ill because it seemed like my body was just one massive burden that didn't want me to do anything. The thing was you couldn't not plan things because that would be equally as depressing and you would have nothing to look forward to and if you did die then you would have spent the the end of your life just waiting for something that didn't happen. It's a hard balance to get right and one I think everyone on the list struggles with. 

It's so exciting though that I get to plan things now and not be restricted or have to worry about hills or how much walking I'll have to do. I'm planning so many things with my friends a lot I can't do for a while but it excites me that I can look 3/6/12 months into the future and know that I'll still be here to do them. I really want to fit in as much as I can because although yes I have this new life it's not always guaranteed and I've always been told 5 years is the average of what you can expect after having a transplant and although I know a fair few people who have lasted much longer I also know a lot of people who didn't make it to 5 years so I'm not going to be taking my time for granted. All I know is what ever time I have I'll be taking full advantage of it. This first year is just a bit of a limbo year because you can do some stuff but you just have to be much more careful so once public transport is a thing I can do again I will be whizzing around all over the place.  

You know it's weird looking back 12 weeks ago because I was SO ill and you can't help but wonder "Would I still be here right now?" The doctors were shocked at the state of my lungs and how bad they really were and I am 100% positive if that call hadn't have been the "right" call I would not have made Christmas it was just a case of how long my will power would have lasted because I can assure you guys it was really waring thin at the end there.  

As amazing as it is that I can do all these wonderful things and go away and all that jazz it will always be the small things that I'm most appreciative for. Simply being able to breathe without being in pain is far more than I ever expected, being able to get changed without having to stop to catch my breathe, to walk up the street, to walk up my house stairs, to be able walk holding hands with my nephews and be able to keep up with them, these are the things I will always be most thankful for and will never take for granted. I have a niece who will never know that side of me. She will never know the kind of person I was when I was ill, she may see photos when she is older of Aunty Stacie with a tube on her face but she will never experience Stacie with PH and I think there is something quite extraordinary about that.   

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