29.4.15

What next?

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For those that don't know I'm currently in the process of getting my degree I'm actually at this moment in time one essay and a exam away from finishing. I would have finished last year but unfortunately the whole septicaemia incident of July/August 2013 set me back a little bit so this is the year hopefully. 

A friend asked me what I am doing next year, aka after I finish in June, I honestly have no idea. I've always said I would like to be a teacher, this however is a very specific type of teacher I absolutely could not teach very young children, 1. I have literally changed ONE nappy in my lifetime 2. I need people who can control their bodily functions. Then there is the what I call Junior school age so year 3 to 6 and I think I could do that age but I feel like I might not have the temperament for that age group. I would love to do secondary school age but I absolutely despise Year 9's and I'm not sure if that's something you can request and say I'll teach everybody else except Year 9's. I'm not sure I even want to teach anymore either. If I do decide to thats another year or two doing a PGCE and do I really want to do that for another year or two? 

So when my friend asked me I didn't really know what to say. I've never been in this predicament before, I was in college till June/July 2010 then I started my degree on February 3rd 2011, then all the transplant stuff started happening and that's been my life since then. I wish I could just be able to say resolutely that this time next year I will have had my transplant and be recovering well from it and planning what I want to do with my life. If money wasn't a concern I know exactly what I would be doing in a ideal world. I would have had my transplant and be planning each and every place I've ever wanted to go to. Unfortunately money is a very real issue and we live in the real world and I will have to figure out what I want to do to make that money, realistically it'll be a job I don't like because unfortunately we don't all have the opportunity to do something we love.

It's just a very odd scenario to be in and I actually hadn't thought much past June of this year and it's like a massive void of space has just opened up past June, in my mind it's like everything just stops at that point. I really can't understand why I hadn't thought of what I should or would be doing after I finished my degree and now my mind is going in about a thousand different directions. Do I plan what I want to do? Is there any point planning what I want to do because I haven't even had my transplant yet? If I plan what do I even want to to? Do I carry on and become a teacher? Do I explore other options? Or do I just pretend like it's not happening and then be totally blindsided when June actually arrives?

Even though my degree has taken a while and even though the incident of 2013 did sidetrack it a bit I've always had it to do and that has kept my mind busy for the past 4 years, I actually think the fact I've had my work to do has contributed to my staying sane the past 3 years it's been a point to reach and head towards. There is now nothing and I really hadn't thought about it. If I'm totally honest with you guys I never thought I would reach this point or if I did I would be Stacie with her new heart and lungs and Stacie who knew where she was heading. Currently there's pitch blackness and I haven't got a clue. 

I don't even know how to approach this and I can't believe I hadn't even thought about it. Although I'm trying to see this like all 3rd year uni students, surely they must feel the same way unless you are one of those really annoying people who wholeheartedly knew exactly what they wanted to be from birth. 

What do I do next?  

As always, thank-you for reading guys and chat soon
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27.4.15

Instagram Diary...


This week I have a lot of work to do and very little actual "life" stuff happening so I thought I would give you guys a Instagram Diary post as my last one was in January time. So todays Instagram post just includes everything that happened through March and April.

1. Baby niece Skyler 2. Proud big brother 3. Cutie pie 4. Daisies 
5. 70's vibe 6. Aunty times7. Chocolate digestive goodness 8. Mothers day 
9. Mount Everest 10. Bestie times 11. Skyler and her sheep 12. Smoothie 
13. Rainbow of yumminess 14. New book 15. Smoothie 16. 90's throwback 
17. Joseph and his technicolor dream coat 18. Orange 19. spring headbands
20. Yours truly 21. Filming 22. Filming take 2 23. Can't resist a selfie 
24. Heart ring 25. That's a wrap 26. DollyBox 27. Happy Easter 
28. Kinder egg 29. Have faith 30. Photo delivery
31. Beautiful gift 32. Grand national 33. Bath time 
34. Beautiful Spring 35. Smoothie goodness 36. Trying to believe in magic 
37. Nephew squish 38. Make a wish 39. Blue lips selfie 40. Taylor swift time 
41. Trying to cook 42. Bubbles 43. Blue skies 44. Fresh hair

You can always find me on Instagram at @staciep90 

Have a wonderful week 

As always, thank-you for reading guys and chat soon
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24.4.15

One of those evenings...

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This evening is one of those evenings. I'm sure a lot of my PH friends would relate to it. I haven't had one of these evenings in a few weeks so I kind of knew I was due one. I'm going to try and explain. 

This evening started off with a lovely migraine and I managed to sleep for a about 45minutes and two paracetamol tablets and it has become more of a dull groan in my head rather than the blindness inducing, physically sick feeling thing that it could be. I'm currently a lovely shade of Beetroot which my lovely PH friend Tina actually calls corn beef, haha, we aren't joking though when we compare ourselves to colours it's not an exaggeration we literally are these colours. It's like when I say my legs are a purple blue colour I'm not joking somedays they literally look like they could be a corpses legs. 

Whilst being a beetroot could be mildly amusing to a outsider this does bring it's own issues, for me it makes me very hot, my face feels like it's about to burn off and I feel quite sick with it. I cannot concentrate for the life of me, I try to watch tv and find myself just staring at something randomly for about 15 minutes completely missing anything I was supposed to be watching, reading a book not a chance and this blog as of right now I think it's taken me about 30minutes to get to this point just because I can't concentrate long enough to write it.

It's one of those evenings where I'm plagued with random chest pains and heart palpitations that physically hurt and it feels as though you may as well not be wearing your oxygen at all for all the good it seems to be doing. And finally you just know beyond all doubt it will be one of those nights where you won't be able to sleep till at least 4am because your body just loves you like that. 

So my plan is to just try and relax as hard as I may find it, there's really not much you can do about them you just have to try and ride them out and hope that by the morning when you wake up and have to do your pump change after a few hours sleep you feel a little bit better. I just hope it's a one off night and I know, I know I need to be grateful because I went a good few weeks without dealing with anything that bad but I would really love to continue with my good streak I've been enjoying it. 

Enjoy your sleep my lovelies.

As always, thank-you for reading guys and chat soon
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21.4.15

Reoccurring dream...

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The past few weeks I've been having a reoccurring dream about the most random thing. I keep dreaming about losing a DT folder (Design Technology) I had when I was 13 years old until I was 16. Is that not the most random thing to dream about? Why my old DT folder? I honestly cannot think why I would dream about it, there was nothing special about it that I can recall, I can remember it being a pain in the arse to carry it around and I think I did lose it a few times during that period, it's just a really random thing to dream about, is it not? 

Maybe it's not the actual folder it's representing but the subject from the age of 13? My DT subjects were food technology and Textiles both I really enjoyed, I loved cooking and was amazing at the coursework side of it but I had to give it up when it was time for GCSE's because I just kept giving myself really bad burns even if I was wearing oven mitts or anything of that kind I would still burn myself I'm pretty sure I burned through to my muscle at some point it was painful and I still have the scars. Then I moved onto Textiles which I enjoyed just as much I was better at the practical side of it though more than the coursework side of it but I really enjoyed it I actually got a B for my GCSE which I think only happened because it didn't feel like work at all, I remember during the exam it was raining really heavily and we were obviously in a massive hall and so it just echoed through it and throughout the exam, I think it actually helped relax me, I was really chilled out in that exam it was one of those exams you come out knowing you did okay. I don't know why I would dream about the folder though?

Someone sent me a link to a dream interpreting website which suggests that the losing aspect is what may be the important part: 

"A lost opportunity; forgetting something which is important. Depending on dream might also suggest actual, or feelings about, loss of health; losing a lover-partner, or whatever the lost thing depicts. If one dreams often about losing things, like handbag, car, children, it could show that the dreamer is deeply uncertain about themselves. In other words they are feeling a loss of identity, wondering where they are going in life, who they are in the present situation, or what value they have. Often such feelings often come about from losing contact with your deep feelings and passions. Without them we may feel we have no rudder, no place to ear for. 

A dream of loss might also indicate being frightened of losing the control they thought they had over their life and the world. Such dreams are often about meeting some massive apparent threat such as a huge wave or creature. The dreams sometimes have great fear in them. 

Dreams about loss can arise through anxiety about losing friendship, or of illness creating loss. It can also suggest that you feel unloved and unwanted. These hells and heavens we each carry within us in the form of fears such as losing the person we love are sometimes habitual attitudes such as that of feeling our partner is out to trick us; chips on our shoulder such as conflict with the society we live in or the authority figures we confront, and genuine childhood or birth traumas. 

Many people have a real fear of losing their identity. People relate to this threat in two major ways. They either fight to keep control, and employ all manner of techniques such as keeping their attention focused outwardly by such things as talking, walking about, drawing, holding their breath or dancing - or they surrender to what is being experienced. To meet the parts of ones nature that has previously been pushed into the unconsciousness, one needs to surrender in some degree. Of the person fights the loss of control as the new material from within is emerging, it sometimes feels as if they are disintegrating. Their body may feel as if it is changing or dying, and they are losing themselves. Such struggles arise out of fear of losing oneself or at least losing the sense of oneself connected with appearance, work success or financial standing - the loss of identity." 

I don't know. A lot of that ^^^ makes sense but it just seems like the most random thing to dream about why my DT folder? I feel like all of that up there is a lot to place on a DT folder that I had from the ages of 13 to 16, it didn't play a massive role in my life it was just a A3 sized folder with a handle that carried my DT coursework, of a class I admittedly liked, in it and was a massive pain in the arse to carry around and I'm pretty sure I nearly lost it about a thousand times during those 3 years. Obviously there was a bit more to the dream after losing the "the folder" I would continue to dream  about missing my bus to get home (which btw catching our school bus was always a anxiety inducing affair for me back in the day and I always dreaded it) and then in the dream I would have to make my way to the public bus and that is filled with obstacles like sand dunes some of which are carved into pretty patterns and snow drifts some of which are also carved into pretty patterns anyway I get to the bus stop and I wake up or at least that's as much as I can remember of the dream. 

Its been the same every time I've had it though it just seems like a really odd thing to dream about especially for someone who very rarely remembers what she dreams about.

What do you guys think?  

As always, thank-you for reading guys and chat soon
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16.4.15

Finding Hope...

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Today was the day I saw another counsellor, a different one this time, a woman who seemed perfectly nice. I am just not sure the whole counselling thing is "for me." I came out more frustrated than I went in. She told me that I need to "find some hope," What the hell does that even mean?! Find some hope? How do you even do that? 

The thing is I was a extremely 'hopeful' 21 year old when I was put on the list way back in 2012, I was living in a idealistic world of "I'll get my transplant soon" "There's no way I won't get my transplant." The problem now is it's 3 years this coming Monday that I was put on the list, in those 3 years I've seen transplant friends die having got their transplants, I've seen transplant friends die waiting for their transplants, I've seen PH friends die before even making it onto the list and I've seen other friends who are just too ill to even get on the list, that alone does not inspire or promote "Hope" in anyway, yet I still remained hopeful because I am ME, I know me and I know I can do this. 3 years though guys, honestly unless you have waited 3 years for a transplant you just have no idea the strain it puts on you. My hope is being chipped at and I don't think I can just find more and I'm not even sure just talking about things is going to help because what I'm saying is not irrational, it's not wrong what I'm thinking and there's no way to change the situation, so how do you help in that kind of situation? You can't just go and pick a different life from the supermarket, you can't just pick up a bit of hope on your way down the vegetable isle. So how do you find it? How do you change your mindset when everything you are thinking is completely right and completely rational. I honestly have no idea. 

The thing is I pretend I'm okay because I feel like I have to, I know people tell me I don't have to but that doesn't make the feeling go away. There are people who look to me and I have to be okay with what is happening to me because they need to see that you can do it, you can wait this long and you can still get your transplant without completely losing your marbles in the process but there are days when I just want to throw in the towel and hide away from the world, but I can't because this is my life and as hard as I'm currently finding it mentally tomorrow will still come and I have to make it through that day.

I am extremely lucky that I have many friends who understand to an extent what I'm going through without pretending like they can totally get it and they help me a lot I'm pretty sure they are better than any counsellors of psychologists will ever be. 

I just wonder where does everybody else get their hope from? Religion, people, what?! I just don't know how to get more hope am I doing something wrong? Is this something easily acquired and I'm just not getting it? 

I'm going to try another counsellor/psychologist at least. I rang Papworth and they said they are going to try and arrange me to see one who deals more with transplant patients and maybe that will help, I don't know. 

But I will always hope for a better tomorrow so at least there's always that ;-)

As always, thank-you for reading guys and chat soon
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14.4.15

The "Good Days"...


Hello my lovely, lovely bunch. So since Christmas I can probably count on my hand the amount of what we call "Good Days" I have had. These are the days when you may almost appear normal, for at least a few hours anyway, if you don't count the having to take medication at some point but I'm sure most people in the world have to do it at some point in the day so it doesn't count, what matters is that you appear almost normal for a good chunk of the day. 

The past week or so I would say I've been complaining non stop maybe not to you guys but definitely to my friends and certainly to my family, I've quite honestly been a bit miserable. It's not me and certainly never has been me, I'm getting really angry about the whole situation so much so that last week I took the step to see a councillor again which is on this Thursday coming  it's a different one from last time and it will be a woman this time which I hope I'll be more comfortable with than the bloke I had last time. So rather than take my anger and bitterness out on my lovely family and friends I plan to talk it through with this councillor and fingers crossed it will do the trick or at least help somewhat.

Today and yesterday actually I had some what I consider to be really good days. Yesterday I managed to have a bath without oxygen for 30 minutes which as of late has been unheard of so I can't tell you how pleased I was about that. Then today I managed to spend the afternoon out in the garden with my nephews, niece and big sister and eventually the parents and managed 3 and half hours off of my oxygen and wait for it I had a bra on too! The last bit might seem a bit strange but bra's are seriously a no go for me at the moment and have been for at least the past 4/5months but I brought a few new ones last week and I can't wear them for the whole day but I can tolerate them for at least 4/5hours even on bad days which is beyond awesome!  

I just really wanted to acknowledge today because I feel like I've been non stop complaining, it may not appear so to you guys reading this but I feel like I've been very negative within me and I like to acknowledge the "good days" more so than the bad days and it makes me happy when I write about them which is always a good thing. 

Spread the positiveness people :) 

As always, thank-you for reading guys and chat soon
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10.4.15

Jollie socks...

Hello my lovely lot. 

So for those who read my blog regularly or have been reading for at least the past year anyway you'll know I do a "good deed" each month or at least donate money to something or buy something that helps towards a certain cause you know those types of things. I've been doing this for at least the past 2/3 years. They range in price depending on what I can afford that month so anything from a fiver to sixty quid. My "good deeds" for the past few months have been donating to a lot of runs and a lot of people who were taking part in the Dechox thing that the British heart foundation were doing. Now normally I don't share when I've done this because I don't like to be "Oh look at me I donated money to something" because simply it's not a big deal and I believe everyone should be helping everyone without any kind of recognition for doing so. 

However I really wanted to show you April's "good deed" because I really love the idea of it and it's different from simply donating money. Now when I was doing the filming thing last week, the two lovely lads who were here doing it were both wearing the same pair of socks. They told me that they were called "Jollie Socks" what that meant and why they were important. The concept of the socks is "wear a pair, share a pair" so when you buy a pair you are essentially buying two pairs and one pair will be given to a homeless person.

Here is their story:- 

"Jollie Goods is a more-than-profit movement seeking to equip Britain's homeless with the tools they need to get back on their feet by producing fun, unique goods enabling you to participate in the work of your local homeless initiative. 

Jollie Goods was born out of a desire to find a sustainable and fun way to give genuine support to homeless projects all over the UK, by seeking to provide practical goods to help the homeless get back on their feet. 

The story starts every time someone joins our movement by choosing to own our high quality products, which instantly unlocks a partner-product for one of their homeless neighbours. 

But why socks...?

We believe change works from the bottom up, and that the small things make a big difference. Socks are a matter of comfort, but more than this, they are crucial in staying clean, warm and dignified. "

They have 5 different pairs of varying colours, I brought 2 different ones the "No.1" and "The Punster". They are £15 each so they aren't exactly a cheap pair of socks but I think the fact that by simply buying a pair of socks you are helping a homeless person more than makes up for that and they are decent quality socks too not something that's only going to last a few wears and washes, you know they are going to last a good long while. 


If you'd like to purchase your own pair just head on over to their website www.jolliesocks.com and have a good nosey around. 

Do you guys have any inspiration for any future good deeds? Let me know :) 

As always, thank-you for reading guys and chat soon
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7.4.15

Born to be more...

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I love doing all the organ donation/PH stuff I do because it keeps me busy and I sometimes wish there was more for me to do. Ever since Friday I've been feeling really down because as soon as a project is finished it means I have to go back to being by myself and trying to keep myself distracted from all my thoughts. I know that the organ donation/PH stuff is technically thinking about it but it's not in the sense that I just have to repeat stuff I've already said and thought about before. It keeps me distracted and my mind off of other things and it's something different and new to do rather than me being in my room doing nothing of much interest. 

I'm very lucky I have my mum who is around a lot so she keeps me distracted and my sister who is currently on maternity leave too so she's always here at the moment so I get to spend time with my nephews and little Skyler. The problem is as soon as a project is finished I always have this sense of longing to be doing more. I'm doing as much as I physically can but I just have this longing to be doing more with my life. I wasn't born to be one of these people who does very little with their day, it's something I think about a lot, I think it's the reason I accept all the things I do, whether I'm well enough or not I'll pretend I am just so I can get the feeling of accomplishment that I just don't get doing the everyday stuff. The stuff I did in December I really wasn't well enough to do but I did it anyway because I didn't want to be dwelling on feeling like crap in my bedroom. 

I just wish there was more for me to do. My friends are here for me as much as they can be but you know there's the fact that a few of them live quite far away and then they have jobs you know who wants to be distracting their friend when they've just done a 6 day 9-5 work week, I know I certainly wouldn't. 

At the moment I just keep switching from angry to sad, to frustrated because my situation angers me a lot and the longer time goes on the more angry I get and it's no-ones fault but I just can't help feeling angry and then it makes me frustrated because I can't direct my anger anyone or anything, that then makes me sad because it makes me frustrated and angry. 

My uni work does very little to keep me distracted because I find it really boring and very little joy in it any more I just want it over and done with. I just can't help thinking what would my life be like if I could have gone to university and I could have gone on to get a job, where would I be now if my illness hadn't stopped me from doing the things I really wanted to do. My school years would have been relatively similar because it really didn't stop me in regard to all that, I maybe would have been a little slimmer that's all, it was just after all that when everything really started kicking off that I wonder what would I have gone on to do?  

As always, thank-you for reading guys and chat soon
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4.4.15

It's one of those things...

So the past few days I've been filming a little something with a couple of lovely guys called Freddie and Tom. A transplant friend of mine got in contact with me and introduced me to Freddie who is making a series of short films to do with organ donation that he hopes will make a difference and help get people signed up to the organ donor register. 

You all know me and if I can help somebody do that I will certainly always do my utmost to try and help. I unfortunately had to cancel on him the days he was actually due at my house because I overdid it with Bernice that weekend but luckily Freddie was kind enough to reschedule. Unfortunately when you're working with pre-transplant people we tend to be a bit flakey and sometimes have to cancel last minute which always kills me to do because as you all know I hate letting people down.

We managed to reschedule for this week though and Freddie and his mate Tom turned up, camera in tow and we got to do lots of filming. My older sister came over so they could film some of the nephews and little Skyler, I think Jaydon certainly found a friend in Tom, he let him play on his phone which to Jaydon makes you an instant buddy. Spencer was being a bit of a grumpy pants but loosened up after a while. 

We did a really long interview. You can definitely tell if I'm comfortable with people because I open up a lot more which normally when I'm being interviewed we don't go deep into things but Freddie and Tom asked a lot of super interesting questions that I assume if you don't know anything about waiting for a organ or anything about organ transplant would be really intriguing. They asked a bunch of questions that I really had to dig for answers because I honestly just didn't know, it was never something I've tried to think about before if that makes sense but sometimes they are the best questions when you have to really think about it. I'm sure there will be a massive blooper reel of that interview I think I said "don't put that in" about 10 times lol! 


The second day included a lot of just extra things that needed to be filmed, so we watched a some of "The secret life of Walter Mitty" whilst Freddie filmed, then did some baking with Meggy and when I say baking I mean we made rice krispie cakes which is as far away from baking as you can possible get and we still managed to get it wrong LOL!! We did a tonne of walking though that day we decided to go to Lydiard Park where we spent quite a lot of time due to the fact I had to stop a lot whilst walking I felt so bad because I'd walk about 50 metres and be like "nope sorry guys gonna have to stop again." I think we got some nice shots there though so it was worth it :) 

I really loved filming this it was so relaxed it was just like chatting to friends. Any future film people should probably take note of that, if you want to get the best out of me be like a friend and that will produce the best results. They were such lovely guys though who made it so laid back I didn't feel pressured in anyway to do anything and we made it as natural as physically possible which I loved and people who are happy to sit and lounge on a sofa with me and watch even part of a movie are good people in my book. 

I'm a little knackered after it all which is to be expected but honestly so worth being tired and I cannot wait to see it :). I'll obviously share it with you guys when I can so I hope you like it :-) but in the mean time you can always check out a few of the other ones that Freddie has done which are also very, very good! Which are here:


*** Credit goes to Tom for the title of todays blogpost though he said that should be the title because I literally said that phrase a million times through the interview :-D 

As always, thank-you for reading guys and chat soon
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1.4.15

When the little things start to disappear...

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I'm not some-one who asks for a lot in life I'm happy to watch a move in bed rather than go out on the town. I'm happy with the few close friends I have, I don't need the best of everything, I enjoy sitting curled up on the sofa in a blanket with a cup of tea although that is now decaf but one of the few things I do enjoy and have enjoyed for many years now is relaxing in a nice hot bubble bath. I can sit in a bath for about an hour to 90 mins just listening to music or reading a book and wouldn't even notice that the time had passed. 

Lately and unfortunately one of my "little things" is being prised from my fingertips. The past 3 or 4 months having a bath has just gotten so unbelievably hard. I'm not even sure why. I'll get in the bath and then after 10-15minutes I have severe back and chest pain kind of like I used to get when I "attempted swimming" in my pre-pulmonary hypertension days. I'll have my oxygen on, my line won't be in the water and I just cannot physically stay in the bath for any longer, I get out of the bath knackered and in pain and it takes me about 30 minutes to recover from it. 

Its not like its the end of the world or anything I can still shower but I really do love a good bath it's one of my 'little things' that I have been grasping onto for the past 3 years and it is just slipping through my fingers if anything its like trying to hold onto water, inevitably it will slip through your fingers and there's nothing you can do to stop it. Hopefully its not something I will have to do without for long, it's just disappointing and one thing I really thought I was going to be able to keep hold of.  

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