I hope
When people find out that you are ill, not just normal but dying ill, it seems to change their perspective of you. If someone saw me on an average day doing what I do without knowing I'm ill they would most likely think "she's lazy, a bit chubby, unfit and probably a lay about with no job" this is easy to assume because they would just see me without any of the medical stuff, without any knowledge of me whatsoever. As soon as they learn you're a dying ill person going about your normal day becomes amazing and inspirational, you suddenly become brave and strong. This isn't just me I have many friends who have these terms associated to them because of what they've had to go through and what they have overcome and what going about a normal day generally means in the grand scheme of their life. 

Me as a person I really don't want to be amazing, inspirational, brave or strong. I have never known how to respond to people who apply these terms to me, I normally say thank-you but hope that it doesn't come across like "Ooo yes I am totally all of those things" because I have never applied any of those things to myself, if I were to describe myself to someone none of those would ever make it onto my list at all. Maybe people consider what terminally ill people have to do inspirational, strong and brave but I have always just considered it human instinct. What I do on a daily basis is what I have to do to survive both physically and mentally, I believe anyone put in the same situation would do exactly what they can do to get through it, if anything a term I would associate with myself is someone who persevere's but I believe that is just human instinct too if I didn't persevere I would have gone crazy a long time ago. 

I say to myself and to close friends that I'll go mad at Papworth if I reach 3 years on the list, it will be annoying for sure because there is no doubt in my mind that life is punishing me in some way for something and therefore I will reach that milestone, but what can I do that I haven't already done? I do what I can to get people on the list, I try to raise awareness for both PH and organ donation, I go to all my appointments, I've moaned to Papworth and talked to them about my worries but really what can they do? It's a situation where your hands are tied, you pretend like you have some kind of control over it all but you don't so you just get on with your life the best way you know how and that usually entails waking up to take your meds/change you IV pump, staying in bed watching "That 70's show" on Netflix all day, take some more meds, maybe a bit of uni work if you can really be bothered, maybe read a little and if you can be bothered to get out of bed go and get some food you know because that kind of keeps you going and it's probably not as healthy as you're supposed to be eating either then take more meds and make up more IV meds and then do it all over again the next day. It's life and you do what you can to get through it. I'm probably being all miserable because I have yet another Papworth clinic coming up and yet again my transplant still has not happened. 

I'm trying to see the positives though I really am I promise. I've just got over a cold and am feeling the best I have in a while, I've got my new niece who I've been seeing and my beautiful nephews who I got to play with yesterday and enjoy seeing them ride their scooters. Bernice should be coming down to see me in 2 weeks so long as we are both well and life is just generally okay I'm just annoyed that I'm still waiting and still waiting to really get going with life you know? 

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


  1. Fingers crossed for you =] Love this post.


  2. Hope your organs come soon stacie! I completely understand in the terms that people think I'm sort of magical person, spending time in a hospital or having IV's in my hands and arms. But it's not like we have a choice to be brave, it's just instinct we deal with what life throws at us. A lot of people go on to me like 'oh you have migraines is that it' but then their views change on me when they see that I'm tied to a hospital beds, medication and treatment just so I can go to school and lead a somewhat normal life. Keep doing what your doing, I honestly can't wait for you to receive your new organs, you'll have so many amazing things to look forward too. Sending my love,

    Gina x


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