27.5.15

I miss me...

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I think my brain is broken.... 

I've been attempting to write a blog about my "feelings" for the past few days and it's just not happening. I can't seem to string the words together. Maybe it's because I don't know exactly how it is I have been feeling recently so I therefore can't express that to you guys? Maybe? 

I don't know, recently I have been having a few bad days where I just have chest pains, nosebleeds, migraines, you know the normal but nothing that's what I would consider 'bad' just normal 'not so great stuff'. I feel like I've been pretending I'm "fine" a lot recently though and not because I'm feeling particularly awful but because mentally I just feel a bit 'meh' or "blah'. I don't know how to explain it to you without sounding moronic. It's just this feeling like you want to be doing something but can't be bothered to do anything and you want to be happy but you feel really distant and off and you can't explain how you're feeling or I'll be really, really sad for no reason whatsoever and I end up being a bitch to anyone around me snapping at the stupidest of things. 

I feel like I'm carrying around this weight of just something at the moment, I don't know what and I don't know how to explain it either. The other night I was particularly down and for no reason whatsoever. I know people change over time, I do, I really do know that and I think people would tell me that I haven't changed but I feel like a changed person. I miss who I was before all of this started even before I started this blog, I miss the old me. 

Some people say these types of experiences change people for the better, they make them stronger people, more appreciative of life etc. etc. I don't feel like this experience has made me a better person at all, I feel like it is chipping away at who I am and who I used to be. I used to be so positive, nothing ever got to me this experience has turned me into a negative, moaning idiot. I used to be a confident person even when I weighed 2 stone more than I do now I was more confident than I am now, I mean how can that actually be possible?! It doesn't help whenever you go to a hospital appointment at least one doctor will mention my weight even though I'm a completely normal weight now apparently that isn't good enough for some of them that chips away at any self esteem I have/or had. I'm attached to my oxygen and my iv pump 24/7 and I just feel like I'm walking around with a neon sign above my head. I just miss the days when I didn't have to be ill Stacie and nobody really knew or no-one cared that much because I didn't seem that ill. 

When I see people nowadays they don't ask me how I'm doing in the general sense they don't want to know the general everyday life stuff they say "how ARE you?" with a massive look of expectation on their face like I'm about to say everything that's wrong or has been wrong with me when in actual fact the people that ask me this question will only ever get the "I'm fine." response.

I just want to be myself again. I miss me. I don't feel like myself anymore. I feel like this experience has made me a worse person and maybe life... the powers that be... whatever see that and that's why my transplant isn't happening. 

I just wish that someone could give me a clue as to what I can do, tell me exactly what it is that I can do to make it happen or just tell me one way or the other whether it's going to happen or not. I am just so fed up of pretending like it's going to happen like it is inevitable, the only inevitable thing in this whole scenario is my death whether that's in a few months or 20 years thats the only inevitable thing here and pretending like my transplant is inevitable is not helping anyone especially not me because the "my transplant will happen" ship set sail a good long while ago, I've been living in "fed-up and bored of it now" town for a good long while now. 

I don't know maybe this feeling will pass but it's been here for a while now I know the Stacie I mourn for, if she could see the me I currently am she would give me a real talking to and tell me to stop complaining. I just don't know how to go back to being that person how do you stop this experience from changing you?  Or not changing you but making you a worse person? I don't even remember the last time I felt positive about this, like I don't remember the last time I genuinely thought "it WILL happen" I know I've said it recently but I didn't genuinely believe it I say it to make other people happy because I don't like the idea of disappointing them. The idea of disappointing all these people that seem to believe in me is awful and I don't want to disappoint them but at the moment I just don't believe half of what I'm pretending to people. Maybe that's what I need to change? How do you begin to start believing in something again though when you have nothing but disappointing experiences to go on?

As always, thank-you for reading guys and chat soon
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23.5.15

Lipstick Spree...

Guys it's actually a make-up post!!! It has been ages since I posted a make-up post and I have missed them so much. It's because I've been really good with my spending habits lately the only make-up I've brought in the past few months is foundation and that's because that is a necessity and not a luxury lol. Today we have LIPSTICKS! 

So lipsticks are my staple, give me an eyebrow pencil and a lipstick and that's generally all I need although it would kill me to not have foundation but I could live. Having a lipstick and a eyebrow pencil I could at least look like a living person. I own a lot of lipsticks I generally stick to MAC because, yes, I am that person. I have lots of different varieties though: Rimmel, Top Shop, Burberry, YSL, Clinique, Dior etc. etc. So I am by no means biased when it comes to lipsticks I just like MAC the most. Today however we have Revlon. 

Revlon is a brand I have tried in the past and never been a massive fan of, however I keep seeing the adverts with Emma Stone in and they have just made me want to try their lipsticks and I thought you know I haven't brought any make-up in a while and I've been feeling a little down lately so "Hey, why not?!" I brought 6 lipsticks altogether, they were 3 for 2, but they are of 2 different formulations. We have the "Revlon lip ultra hd lipsticks" first and then the "Revlon colorstay lipsticks" after. 


Okay so firstly is the "Revlon lip ultra hd." I want to address something first and foremost the packaging makes me want to tear my eyeballs out, I cannot stand it, if I had actually gone to a shop and picked these up I probably would not have ended up buying them based solely on the packaging. So saying that it is probably a good thing I brought these on the internet rather than in store. The packaging just feels cheap and plastic-y and I just cannot imagine it lasting too long in one of my handbags, also the lipstick pokes out slightly from the bullet which means you have to be super careful when putting the lid back on because it tends to catch on the edge which is gross and annoying. 

The actual Lipstick itself though is really good and I really like it, so it makes up for the fact it's in a horrid packaging. It feels lovely on the lips and really moisturising which I love and therefore gives more of a sheen to your lips so if you're looking for a really matte lipstick this is probably not something to go for. The colour is really bright which I love because if you've read past posts I love a bright lip. I'm very much a reds and berries gal so I went for the colours (left to right) Poinsettia 840, Iris 850 and Hibiscus 860. It doesn't matter what season it is as to what colour I wear although I will more likely wear Hibiscus during the summer months as it's a coral tone but I love my reds and berries so you'll find me with those more often than not. 

If you don't mind plastic packaging and aren't looking to spend a fortune on lipsticks and aren't prepared to pay £20+ for one then I think these are definitely a good option they are £7.99 each and were 3 for 2 so bargain in my eyes :). 

  
Next up we have "Revlon Colorstay" which I'm really surprised about actually they aren't what I expected at all.  First off the packaging is lovely, I really, really like it for a highstreet lipstick it's just lovely it's still plastic but just seems a bit more refined than the ultra hd packaging. 

The lipstick itself is what surprised me though, I was expecting them to be really bright and just a lot more in your face but once swatched and on the lips they really aren't. They have the texture of a lip balm which is lovely but the colour is very muted. Also in the picture up there they look like they would be really shiny on the lips but they aren't it becomes quite matte which I really like and the colour doesn't transfer at all which is a massive bonus especially if you're planning on eating and drinking. I think these are the lipsticks for those who aren't confident enough to wear really bold lipsticks or they're just a really good day time lipstick. I'm currently wearing the colour Couture and it just makes my lips look so much better. It's my lips but just way, way better and I love it! I've never been afraid to wear bright colours but if I'm having a day where I don't want to wear bright colours but think my lips need a lift these are definitely the answer. You also don't have the problem of the lipstick wearing, it wears off really evenly so you don't have to keep looking in a mirror to see if it's patchy or anything you could quite confidently go about your day without worrying whether someone thinks you're a weirdo for having patchy lipstick.   

I brought the colours (left to right) Couture 050, Socialite 025 and Finale 095. I'm super impressed with them and the colour range they have and for £8.99 each they are completely worth it.   

As always, thank-you for reading guys and chat soon
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22.5.15

Something I AM good at...

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I'm not good at much. I never have been and have never claimed to be good at anything, not really. There is usually someone out there much better than I. I'm not the prettiest, I'm not the slimmest, I'm not the smartest, I'm definitely not confident, I'm not a particularly good blogger, I'm not the greatest ph or organ donation campaigner, I'm not the funniest, or the wittiest. I'm just not particularly good at anything really and that's okay. 

It's my own fault really because I surround myself with people who are all of these things. I have friends who excel at all of the things that I could only wish to be amazing at. I'm not even the best transplant patient I can't even get the one thing that encompasses my whole life right, I don't look ill to start with unless I have my oxygen on, I was supposed to: get on the waiting list, wait a respectable amount of time, get my transplant and then carry on with my life. I couldn't even get that right, I'm a crap ill person and crap transplant patient not that it's a bad thing really it's a mask I get to hide behind. 

It's okay though, I'll never be any of the things I wish I could be good at I will always be perfectly average, plain old Stacie and I'm okay with it but something I am REALLY good at and something that I think needs to be said is I am very, very good at choosing amazing friends. It's hard to get to know me, I'm a wary person. If you only know the happy, polite, everything will be okay Stacie then you don't really know me. I find it hard to really open up to people and it's a flaw and I know it is but when I make friends I have to try and figure out whether that person will be someone who is happy to talk to me in the early hours of the morning because sometimes thats the only time of the day that I'm awake and when my anxiety really hits hard. That person has to be okay with me not being able to turn up to something that was planned a month in advance because my body just isn't having it that day, they have to be okay with my sarcastic and sometimes dark sense of humour. They have to be okay when it seems like I'm pushing them away because in my mind it's for their own good but they will still come back anyway. These things all mean the friends I have are amazing, loyal, dependable and just downright awesome people. Very few people actually have my mobile number it's because I hate talking on the phone, I'll talk in person and I can text and message that's fine but actually talking on the phone is just something I have never really been comfortable with even before my first mobile at 12 years old (yes I am that old, my good old Nokia 3310 lol). So if someone has my mobile number that means I like them enough that I could put up with a telephone call from them which isn't that many people. 

I'm a hard person to get to know even with a blog and a fairly active online presence but I just think my friends need the recognition because they put up with me and I don't reckon I'm an easy person to put up with sometimes but they still persevere and I love them for it. 

As always, thank-you for reading guys and chat soon
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19.5.15

Who invented revising?

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Who invented revising? I'm so bad at it. I've really never been very good at it, it's what I liked about the whole Open University thing I've only done one exam through my whole degree so far. I've got my 2nd and last coming up on the 3rd of June and honestly this revising lark just isn't for me. It probably doesn't help that I'm doing history and a lot of that requires remembering specific historians who I quite frankly could care less about lol. I enjoy history ALOT I just don't enjoy the constant back to back from one historian to another. I know what my opinion on matters is but examiners don't care about my opinion they care whether I can prove my opinion with other historians opinions. How do I prove it if I can't remember the bloody historians? 

Exams have never been my area of expertise. I remember through school people generally thought I was "smart" I think a lot of people were surprised when I got my exam results, I was happy with them because I worked damn hard for them but there were no A's in there although my Maths really should have been I mean FOUR marks?! come on! Whoever the examiner was on my paper that day must have been a tight fisted old git because I'm sure they could have found 4 marks from somewhere LOL. Megan will also hold over me forever that she got a A and I didn't, her A was in Drama, of course she would get an A in that subject haha.  A good demonstration would be my history GCSE I got a A* in every single one of my history essays/coursework through year 10 and 11 and then when it came to the exam I don't know what I did but I came out with a C overall, exams suck! 

Revising though I've just never had the knack for it. I literally just try and stuff as much in my brain as I possibly can and hope that whatever I've managed to stuff in there is enough to do the job and if all else fails just hope whoever is marking it is having a particularly lovely day and feeling generous. I'm lucky that they are coming to my house so I don't have to worry about my belly rumbling and disturbing the person next to me and I get to eat sweets whilst I'm doing it and hopefully it will just make me feel much more comfortable than if I were in some stinky hall somewhere full of anxiety and dread. 

Hopefully though the light at the end of the tunnel is that it will be my last ever exam ever and I will officially be out of education until I can decide what it is I would like to do with my life, which is still to be decided LOL. 

As always, thank-you for reading guys and chat soon
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16.5.15

Would you rather...

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My sister asked me the today whether I would prefer to have had 50 false alarms or the amount I have had, being 3 false alarms.

This is something I have gone over a lot in the past 3 years. I remember in the early days I always used to say how horrible it would be to have a lot of false alarms because it would be disappointment after disappointment and I'm sure that would be awful but then I have only had 3 false alarms in 3 years, I feel like that is equally if not more awful than having a lot of them. Look at it this way if I had, had 37 false alarms whilst I have been on the list that would only be 1 false alarm a month, I definitely think I could have done that. 

The problem is when you only have a call once a year like I have had you start to doubt whether it will ever happen and I can assure you that lately I been feeling exactly that way, in my mind it's not happening and maybe never will so I'm just trying to live each day as they come. If I had 50 false alarms in my time that would provide some sort of hope because you know they are thinking about you, you know that they really are trying to find those organs for you but when there is so much time between calls you feel like a number on a page, just a bunch of details that people quite frankly don't care about you're just a statistic to them. It's just the way it is. 

I have expressed this feeling more than once to Papworth especially in February, I told them that I feel like a statistic, that I felt like the only reason I even had my false alarms in the first place was because they knew it wasn't going to happen and they were just trying to make it appear like they are at least "trying" to do some heart and double lung transplants without actually having to do them. My mind has even gone to the place of maybe the organs that they said weren't viable actually were and they just pretend like they aren't so they can use them on someone else. I do realise as I'm typing this a) how cynical this sounds, and b) how dramatic it sounds, but this is just where my mind goes. I don't know whether this is how other people have felt I feel like this is the kind of stuff that people daren't speak of or at least try not to acknowledge. 

Maybe if I had, had 50 false alarms my mind would still be going to those places I don't know but from where I'm currently sitting I would much rather have had the hope of 50 false alarms than the very disheartening affect of 3.   

As always, thank-you for reading guys and chat soon
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14.5.15

Quiet on the home front...

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I'm sorry it's been 6 days since I last wrote anything, it's weird I tend to only write blogs if something extremely amazing or extremely crap has happened which I suppose makes for better reading but this week has been good. It's quiet on the home front, drama free which I always appreciate. I'm really well at the moment, or you know well for me, which I'm currently enjoying immensely and I'm not doing to much overthinking. Normally I'm very much in my own head about everything and I just go over and over it which is to be expected I suppose but it is in no way good for a person to be doing that and the past week I've been really good I think and just going with it, it probably helps that I'm not feeling awful as well lol. 

I did have Hammersmith on Tuesday though which was a very long day for me I woke up at 2 am (because my body hates me) and didn't get home till 8pm ish which beyond sucked, it's not like the appointment was even worth it either. Basically I got there 9am had a ECG and then had to wait till 1pm to see my doctors who basically said they don't plan on changing any of my medications because if it went the wrong way and I didn't react well to them there wouldn't be enough room to bring me back to where I am. I am stable but I am still very ill and waiting for a transplant is a tight rope and if I go too much over then I fall off, unfortunately there wouldn't be much they could do. So it's a case of do we risk changing the meds and potentially making me better but also at the same time risking me get worse and quickly? At the moment the risk isn't worth it. It's not like they would be adding a drug onto of the ones I'm already on they would have to take me off of one I'm currently on to replace it with another which is where the risk lies, so why replace a drug that is already keeping me stable? The risk only becomes worth it if I ever get to the stage where I start rapidly declining again which we hope is never :-D. They did say I could get a tattoo though which is really awesome news because I've been trying to convince them since I was 18. I'm not one of those people who plans on getting a million but I do want ONE so we'll have to wait and see for that one :) 

I also got to see my lovely PH friend Karen and her husband Jez while I was there which was lovely, normally any people I see aren't people I know and tend not to be too talkative lol. Rosie came and saw me as well when she got a break from work and we basically arranged our schedules as we have a quite busy June coming up, I'm really excited for it :-D 

Other than that though guys life is boring but good which is kind of how we like it because exciting and good always means a very tired Stacie afterwards lol. 

As always, thank-you for reading guys and chat soon
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8.5.15

The drama of a General Election...

The 7 major party leaders of the General Election 2015
Okay so I promise this isn't going to be a massive rant about the General Election but anything I do talk about is simply my own personal opinion so please just bare that in mind.

I've been really into politics since I was about 15 or at least that's when I got interested in it one of the main reasons I left school and went to college rather than 6th form was because our school didn't offer a politics A-level which I very much wanted to do, so I went to college and got to do my A-level in Politics. I've also carried on with it in my degree as I chose to do a few "politics" modules. I much prefer American Politics though as I find that much more interesting than the British system. 

Yesterday was the General Election here in the UK and I actually requested a postal vote which was a bad decision on my part because it never occurred to me that if it didn't turn up I wouldn't be able to just go to my polling station and cast my vote so after a very long time on the phone to my local council offices I was told I would need to make it up to their offices where my vote got reissued. Luckily I managed it and all was well. I voted Labour. 

The reason I voted Labour has mainly to do with the NHS and I know that a lot of people will say that Conservatives can't get rid of it because we won't let them but privatisation is already happening and that in my opinion is just not acceptable. I believed that Labour would do a better job dealing with the NHS and I simply don't trust the conservatives with it. That being said I do believe that 5 years is not enough time to get a true idea of what a government is capable of but I didn't want the Conservatives in, in the last election and I feel like I every right to complain as I didn't vote for them in 2010 and definitely didn't vote for them yesterday. 

I am annoyed that they managed the majority that they got I really thought that even if they won they wouldn't make it to the 326 seats that they needed, I definitely think one of the major factors was that Scotland basically is now SNP land and that majorly affected the Labour vote but obviously it's what Scotland felt like they needed to do so more power to them and all that. 

One of my major bug bears with our political system though is that we have a First Past the Post system which is far from fair and doesn't accurately reflect the vote in a proportional way. The First Past the Post system works like this: we vote in constituencies, each constituency has a MP that is elected and takes a seat in parliament there are 650 seats total. The reason this is not fair is because one constituency could have 500,000 people in it and another could have 20,000 people in it yet they both have 1 seat each and have the same amount of say in parliament. (I realise those numbers are exaggerated I just pulled them from the air but you get the point) That's ridiculous and doesn't accurately reflect what the country really wants at all whereas a proportional system would dole out seats based on votes not constituencies. 

The reason I mention this is because the SNP managed to get 56 seats in Parliament yet their percentage of the vote is only 4.7% and I am in no way saying I want UKIP to be a big part of our Parliament but they got 12.6% of the vote and only got 1 seat in parliament. That's how ridiculous the FPTP voting system is. If the voting system was done via proportional representation the seats would have looked much different (source) the seats they would have had would have been more like this: 

            FPTP: Conservatives 331                        Proportional Representation: Conservatives 240
                       Labour 232                                                                              Labour 213
                       UKIP 1                                                                                     UKIP 83
                       Lib Dem 8                                                                                Lib Dem 53
                       SNP 56                                                                                     SNP 37
                       Greens 1                                                                                  Greens 24

Hey ho it's over for another 5 years and I just really hope Conservatives don't do as bad a job as I'm anticipating.  Even though I don't believe in the system we have Conservatives did manage to get a majority so I will just have to go along with what the country obviously want at the moment. 

As always, thank-you for reading guys and chat soon
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5.5.15

The reality of blogging...

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Lately there's been a lot of "life" stuff going on, not stuff that I'm going to discuss but as I go on you'll understand why I'm writing this blogpost. I get a lot of messages fairly often from people who say, "Oh I didn't know this, that or the other" when they find out something that is possibly going on in my life. Sometimes this surprises me and I don't know why it should surprise me but it tends too. The thing is I write a "lifestyle blog" so I think people assume that nearly all of my life goes into it. It doesn't. 

My blog is very one track a lot of the time. I share what I am comfortable sharing and that mainly has a lot to do with my transplant journey and how I am feeling about that and then there's the very, what I'm going to call, "general" life stuff that I share and the occasional Haul type blog. Now all of that generally only equates to about 20-30% of what is actually going on in my life at any given time. Even the stuff I share on here is very edited. I can start off with let's say 2/3 word pages of text that I then edit down to not be too long and lengthy as I think "do people really need to know that? "Is it my place to say that?" "Or should I be sharing that as it's not really my information to share?" 

The reality of blogging is that, yes, I share a lot of ME with you but my life isn't just me I have my family, the stuff that is going on in their lives, my friends and what is going in their lives and then the stuff that is just me and what I'm doing that I don't share with you. I share a lot of my transplant and PH stuff with you guys because I kind of feel like a lot of that is public domain and can help people and I've never been uncomfortable sharing that stuff with you guys but then again there is still some of that stuff that only me, my family and extremely close friends know about. 

There are some people that have a very idealised view of me because they have only ever known the polite, kind and nice Stacie that I am and I would use that as my description probably about 90% of the time especially with people I'm not really very familiar with. People don't see the stubborn me which I am. People don't see me when I get really passionate about a topic that I'm really into, you've never heard one of my history or political rants. The bossy Stacie. No-one outside of my family ever see's sad Stacie ever! Jealous Stacie I feel like you've had a sneak peek of but have never really "seen". 

Then there's mad Stacie, and I don't mean the Stacie that is mad at her situation because that mad Stacie is more frustrated than anything (probably the Stacie you've seen the most of) but really actually mad verging on furious Stacie. This part of me very, very rarely gets seen and that's because people who are close to me know never to get me mad especially when I am in the right. I know how to admit when I'm wrong as much as the stubborn part of me hates it but I know when to say "I'm sorry I'm wrong." Mad/furious Stacie made an appearance this week for me, last week for you and this lead to me cutting all ties with a few people, this is why I don't like to get furious or mad because when I am and when I am right I don't give second chances. This may seem like a character flaw to a lot of people but there are some cases in life where some-one can do something so horrible that they can't take it back whether they know what they did was wrong or not, I don't allow them to have a second chance, I become very cold and I will never ever let that person or people back into my life and this is something that very few people know about me because mad/furious me has only been seen a few times in the past 10 years because that is literally a character trait that is a minuscule part of me and I would like to think the people that I surround myself with would never do something that would induce that kind of rage and ferocity from me. Also I don't have time to waste on being mad at people, I would rather cut that bad part of my life out and just move on with my life rather than them being able to come back and be able to hurt those people all over again. 

When a lot of people blog it is generally all of the good stuff that their life is currently offering and I am guilty of doing that too except when I talk about my transplant and PH stuff I am very real and honest about all of that, but life stuff - I share the good stuff and I think that's a good thing because I don't really want to remember being so furious with someone that I had to cut them out of my life I would rather move on. I feel like when people read blogs they need to remember that it is only a sneak peak into that persons life and that usually there is probably a lot more going on behind closed doors.  

As always, thank-you for reading guys and chat soon
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3.5.15

Blogilates...

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Today I want to talk to you about Blogilates. Ever since I saw some bloggers talking about it, I thought I should check it out and possibly give it a go. I researched it and watched quite a few of the videos and decided to try it. 

Blogilates are basically Pilates done by a lovely lady called Cassey Ho who has a YouTube channel and a blog, she does workout routines from fat burning cardio, to sexy arms, ab sculpting etc. I tend to avoid the cardio ones because that obviously would not be good for me. She has a 4 week routine called Beginners 2.0 which I have been doing for the past 10 days. It's really good! Nothing is the same on each day so you can't get bored with it and it's stuff that I can actually do. I have to stop the videos a lot and a 9 minute video does take me about a hour to complete and sometimes I avoid the bits I know would be over working it for me but a lot of it is stuff I can do. The Roll Ups which seriously engage your core and for each one are worth 6 sit-ups are really good and if you saw my twitter not to long ago you will have seen me massively complaining about how much my currently non-existent abs hurt, but that's because they haven't been worked in a very long time. 

I'm not doing it to lose weight although that would be a massive bonus, I'm doing it because I'm really worried about when I go into have my transplant and how weak I will become afterwards, so I'm hoping that by doing at least some work before hand that will help afterwards. It's taking a lot of will power on my part not to give in because of how long it takes me to complete some of it but I do feel better after I've done it, I feel like I've accomplished something. I did her "6 minutes to sexy arms" video and I actually managed to do it without stopping and I think that's because it didn't require anything from my lungs or heart it was all my arms and they seriously burned but a good burn not a I think my heart and lungs are about to give out kind of thing. Obviously on bad days I can't do any of it because getting out of bed is hard work for me so I obviously have to gauge when I can and can't do it but I've been managing a good portion of all the non cardio related videos :) 

I just thought I would tell you how much I really liked them. 

Here's her YouTube channel if you would like to check it out; click here 
Here's her blog for more information on Cassey and all of her routine plans: click here

As always, thank-you for reading guys and chat soon
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1.5.15

Distance...

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The past year I would say I have been distancing myself from my PH community not really intentionally and people probably haven't even really noticed but I have. Not from Ph friends who I've been friends with for years and love dearly but in the sense that there are always new Ph people coming into our community, it's a slow process but Ph is becoming more recognised so more people are being diagnosed and they generally find us via Facebook. There was a time where I would instantly introduce myself to any new PHer but I find I just sit back and watch more nowadays. I was having a conversation with a friend and think that has a lot to do with it, firstly self preservation for myself, it is very hard to watch people die constantly and I do try to separate myself from that and from having it affect me too much because I feel like if I was really close to all of these people and then a few died one after the other that would be extremely damaging to me, so self preservation is definitely the first thing. The second and I think more important one is that it's for their benefit not to really "meet" me. I really don't think I'm the best example to put in front of a newbie Pher, they find out I need a transplant and have been waiting as long as I have and then suddenly they think they're going to need one tomorrow and they're going to die. That must be demoralising for them. Also if I do die I don't want a tonne of people being really sad about it. I mean it's likely they may need one at some point but there are so many more drug options than when I was first diagnosed that hopefully that will be in the very far off future for all the new Phers that are just coming into this. I mean with the very little options I had back then I still have managed 13 years without having a transplant which if we're all honest is a bit of a miracle in itself. 

The thing is even though I have been distancing myself a little bit I still do try to help where and when I can and hopefully my situation doesn't completely daunt them when they find out, I really hope it doesn't. There are those that I have known for years though and have been friends with for years and tonight I just really, really do appreciate the little community that we have. I don't know if I have just been lucky but all of my PH friends are just the loveliest people that I have the honour of knowing. Everyone that I associate myself with are all just so lovely and supportive and I feel like I don't acknowledge that enough.  

My Organ Donation people are the same, maybe it's the struggles we go through as people and we can all appreciate that and recognise that in each other. I don't know I'm just a very lucky person to have these wonderful people in my life and feel like I just need to acknowledge that for once rather than complain about something lol.  


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