30.1.15

I want to do something...


I did something yesterday, something I can't tell you until next week unfortunately but it's exciting I promise! It required filming and being up at 6am, like actually up not wake up and take my pills do my pump change then go back to sleep kind of up, actually get up and stay up; have a breakfast rather than lunch for breakfast, get changed into actual nice clothing and not sleep during the day. I've missed being proactive, having something to do. 

You can plan as many things as you like, pretend like you're actually doing something but nothing beats actually accomplishing something. It has been so long since I've felt that real tired feeling. It must be weird considering how much I complain about having to sleep so much but yesterday it was the kind of tired you get from having a long day from really doing something not just because I'm ill. I'm not sure if that makes sense to you guys because it's hard to explain. 

Yesterday, although it's not the industry I want to work in because acting and that type of thing has never been something I have aspired to do, it just made me want to be able to do something so badly. I'm paying the price for yesterday today and probably for the next few days but today I was just twiddling my thumbs because I felt like I should be doing something, I wanted to do something. 

As a terminally ill person you become so used to doing very little you forget what it's like to actually work at something and get it done, that feeling of "yeah, I actually did something today that I'm really pleased with" this is because you are so focused on keeping yourself well you are constantly working on something that you never see any real progress with. I know I'm getting my degree as well but I am so bored of it now I don't actually feel like I'm accomplishing anything with it I just want to get it over and done with. 

My transplant will be the biggest thing I will ever do in my life and I will never be able to top it because a transplant takes will power and powering through some extremely tough times (fyi this is the reason I admire all of my transplant friends SO much) but I hope it means I get to go on and have those kind of days where I feel like I did something in those days not just sit around wishing I could do something like I do at the moment. 

As always, thank-you for reading guys and chat soon
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25.1.15

The Front....

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I often receive Facebook messages, tweets and emails from people. A lot of these messages are from newly listed people or people who have been waiting a while and are starting to get a bit fed up of the whole waiting game. They usually ask me how I cope waiting for as long as I have. 

The honest answer? I don't. I have become a master at having a front that I put up for the world to see. It is something I have carefully perfected my entire life. Through my school life not that many people knew I was as ill as I was and the front I used was very useful because it meant I got a extremely normal school experience that wasn't completely plagued by being associated as the ill girl. Don't get me wrong people knew but it wasn't something I harped on about to people and it definitley wasn't the first thing that people knew about me. 

Nowadays it is more of a defensive thing or a protective thing. I cope in my own way with the fact that I have been waiting as long as I have. This probably isn't very helpful to newly listed people or people who are getting a bit fed up of waiting because they probably see someone who is coping really well and don't understand how I "seem" to be coping fine. I don't document whenever I want to scream at someone or feel like the world has some massive vendetta against me or when I feel extremely jealous of someone because; they get to go on holiday, they get to go on a walk, they got their transplant. I internalise a lot of that I don't feel the need to vocalise a lot of it. I complain to my best friends, my sisters, parents and people I trust whenever I kind of get to breaking point but I don't personally feel it would be helpful for people to know all of that or hear/see it all. Does that make sense?

If I'm honest 2 years was enough for me. I was fine before 2 years, or not fine but I knew that was how long I would probably have to wait and I had that in mind. I told myself that all I had to do was get to 2 years and I did. Now? I can't completely process in my mind why it's taking this long because 2 years was 9 months ago and 9 months in transplant world is a long time. I understand that I have a lot of things about me that mean I may have to wait longer but then there are qualities about me that mean it should be really easy to match me and those two thoughts are struggling to reconcile themselves at the moment.  

Something that does help me though is that I remember and think about the people who are worse off than me. I'm very ill yes but I still have a nugget of hope I could still go on and live a very fulfilling life. There are people out there that don't have that. I live with chronic pain but there are people who are in much more pain than I am. I like to remember that things could be far worse than they are and that definitely helps with the whole coping thing. It's all about perspective. 

As always, thank-you for reading guys and chat soon 
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23.1.15

Valentines lush haul...


We all know I love Lush and so when I found out that Lush had bought out their Valentines range I had to go out and buy some and I must say I was not disappointed. I didn't buy all of it because I'm not a massive fan of soaps and I know they have a few in the range so I just went with what I like most. 

Firstly we have the Love Locket Bath Bomb [£6.95] I had this last year and I absolutely loved it. The reason it is so expensive is because it is supposed to last a few baths, now if you are anything like me I have zero patience for splitting up the bath bomb and saving the rest of it and therefore I just use the whole thing but if you aren't like me it can last up to 3 baths which is good value for money for £6.95. 

Then we have the Prince Charming Shower Gel [4.75] normally I don't really buy lush shower gels I'm more of a Soap and Glory gal when it comes to shower gels and creams but this really smells lovely. It isn't too sweet but definitely has a distinct smell. It is made with Marshmallow root, Vanilla, and pomegranate juice. 

I'm running low on Bubble bars and brought two the Heart Throb Bubbleroon [£3.65] and Unicorn Horn Bubble Bar [£3.25] the Heart Throb bubble bar sends the bath bright red and has lots of glitter in it and also has shea butter in which is always lovely. The Unicorn Horn is quite floral smelling so definitely something for when you want a fresh smelling bath. 

Finally we have the Floating Flower Bath Bomb [£3.50] and as the name suggests it is very floral smelling as it's packed full of Jasmine but also has Ylang Ylang oil in and I cannot wait to use it :) 

Is there anything from Lush's Valentines range you want to try? or would recommend? 

As always, thank-you for reading guys and chat soon
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19.1.15

Operation Get Better... (Sort of)

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You see with a blog you get to pick and choose what it is you share, sometimes you share everything and sometimes very little. The past month I haven't been sharing that much with you guys and the sole reasons are that I don't particularly like to moan about it too much on here because I have written a fair few blogposts in the past month that were just pure full on moans which honestly made me feel a bit better to write but probably wouldn't have made the best reading and therefore didn't get published. 

The past month I have quite simply felt like crap and not just normal PH crap, full on hide myself under the duvet, don't get out of anything but PJ's for near on two weeks, no make-up, no going outside kind of crap. I've basically been trying to hide away from the world for the past month and it does help, I know there will be people who say "aww no you need to get out, see people, it'll make you feel better" I tried that before Christmas, during Christmas and even a little bit after Christmas it did not help me it made me feel worse.

Basically a bunch of different things seemed to just happen all at the same time to me and they honestly just exhaust you, it's hard to try and describe to some-one the complete draining of energy that I have experienced unless you've gone through something similar. It may seem like you're being a complete lazy bum but honestly it just couldn't be any further from the truth. I'm having severe flushing in the face, this is actually a side affect to one of my medications but this flushing feels different, I wake up in the night sometimes feeling like I cannot breathe, I'll have a heart rate in the 120's/30's and my O2 sats will be down in the 70's, in addition I also wake up feeling like my head is going to explode coupled with massive headaches verging on migraines, constant nosebleeds and nausea for most of the morning. I can also only get off of my oxygen for about 1 hour before my chest and back start feeling it. 

I went to Hammersmith today though and they have decided that they don't think this is due to co2 retention which I'm fairly pleased about because apparently my condition means that shouldn't really happen because the flow in my heart is the other way round or something, they kind of lost me when they were talking about it I was just happy they didn't think it was. They have decided they want me to go on a week ECG machine as the 2 day one wasn't conclusive enough for them which is easy enough to do. They have also decided to take the risk and start upping my Flolan again. Last year it was decided to stop upping my Flolan anymore because it was starting to affect the heart failure I'm currently in, Flolan is a double edged sword it can make you better and it does work miracles for some but it can also cause heart failure so it's definitely a balancing act and at the moment the way I'm feeling we are taking the risk and upping it again until a point where I start to feel the side affects of it, if after two weeks of upping the Flolan I don't feel any side affects apparently I need to get hold of them.

I'm really hoping it works though I'm a bit fed up feeling like rubbish. 

I also had a exercise test today, an echo and lung function. The bike test went okay, Luke (one of my consultants) said that I managed to reach the same resistance as last time which is really great it means the strength in my legs hasn't declined any but the oxygen consumption was a lot less which isn't great but not unexpected. They couldn't tell me more as they have to do some comparative studies but that was the initial impression. We couldn't get any arterial bloods which was a bit annoying especially as they had already stabbed me with the needle the problem is they have to be taken literally seconds after you stop cycling and much longer and they are just useless and he just couldn't get them first time unfortunately. 

I'm hoping though that this plan of action will get me fighting fit, or you know as fighting fit as I can be for me lol. 

Hope you have all been well in Blogland?     

As always, thank-you for reading guys and chat soon
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16.1.15

Mini make-up haul...

I decided to buy a few make-up bits just to refresh my look a bit for the coming months, I get easily  bored with my current make-up habits so like to change it up a bit. So here is what I brought. 

Maybelline expression Kajal eyeliner in the shade 37 Green [£2.99]

I don't often buy Green Eyeliner but I do on occasion like to wear it and with it being spring soon I thought it would be good to wear it again as I think green eyeliner tends to be more of a Spring thing. 

Maybelline expression Kajal eyeliner in the shade 38 Brown [£2.99]

Through winter I tend to wear a lot of Black eyeliner and sometimes that just gets a bit boring so I thought I would replenish my brown eyeliner stock and soften up my eye look a bit and brown eyeliner is always a sure fire way to that. 

Maybelline Color Tattoo in the shade 05 Eternal Gold & 35 On and on Bronze [£4.99 each]

Through autumn and winter I wear a lot of very dark browns and I just want to lighten up eye look a bit but gold and bronze still keep it really warm as I'm still very much a brown, gold tones kind of gal

Benefit BAD gal lash mascara [£17.50]

I have been in the market for a new mascara for a while I normally stick to my trusted "Benefit They're Real" mascara but I was getting a bit bored of it and although I still love it I just wanted something new. Now I understand that this is still the same brand i think the mascara is completely different. I actually got The mini BADgal lash mascara in my advent calendar in December and I found that I really, really loved it. The brush is a bristle brush which I really like and seems to just work with my eyes, it's not too clumpy either which you sometimes find with bristle brushes compared to plastic applicators. I personally just really love it.

Is there any make-up which you would recommend for coming out of the festive season? 

As always, thank-you for reading guys and chat soon 
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14.1.15

1,000 Days...

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1,000 Days

What have you done since April 2012? I bet you have a list as long as your arm of trips, occasions, achievements and accomplishments that you did and got in those 1,000 days. 

What I have I done since April 2012? 

Waited.

For 1,000 days I have been waiting, most of it has been very patiently but I must admit since my last false alarm on September 25th 2014 my patience has started to wear extremely thin. When you go to hospital and the doctors as much as someone in my position does, patience is a something that becomes a part of you, you cannot get through your life without some form of patience or you would always be shouting at staff for their ineptitude, for hospitals lack of communication with one another and would be constantly frustrated with waiting in waiting rooms. Patience is a skill that is of very high value in my kind of life. The problem though? It's 1,000 days. 

There's different kinds of patience though you know? You may think you're patient because you managed to wait 18 months for some holiday that you saved to go on but the thing is you knew that was going to happen, you waited patiently because at the end of it you knew without a doubt you would get to go on that holiday. Now imagine having to wait for an unknown length of time for something that may not happen. That's the kind of patience I have had to acquire the past 1,000 days.
 
This is honestly not something I would wish on anybody. I'm starting to lose my rag with it all and the problem is I can't just throw in the towel so what do I do? I stay in bed listening to audiobooks, watching movies just trying to ignore everything. I'll listen to and watch peoples pretend, perfect, happy ending lives and ignore my life for a while. Seems like the best plan to me lol. 

I've not been feeling that well for the past week or so and in the past 9 days I've only spent one of those not in pyjamas so that's probably why I'm a bit grumpy about it all, although that being said if I was feeling okay I still would be grumpy about it I think. 

I hope it's not much longer 1,000 days certainly seems like I have done enough waiting. Whatever unknown, mysterious thing I'm being punished for I've done my time. 

As always, thank-you for reading guys and chat soon 
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12.1.15

Stacie's Audiobooks...

Hello my lovelies. I love books I just sometimes don't have the time to read them, or I'm just not in the mood to read them. I'll want to read a book but just am not in the kind of frame of mind that I would be able to concentrate on actually reading one. I am a massive fan of audiobooks they are perfect for me when I am just too tired to read one, which tends to be just before bed, and they are also perfect when I don't want to watch tv or movies and want to read a book but just can't settle into it. 

I have always loved audiobooks and that might sound strange as I am 24 years old and were audiobooks really around back in the 90's when I was growing up? The answer to that was yes, yes they were. Not in the form we now know them as everything is so digital nowadays but when I was a young'un we had these mystical things called cassette tapes, that is how I remember audiobooks as a child. We had a tonne of really magical stories, some of my most vivid memories as child are of me and Megan listening to a few particular cassette tapes while we were going to sleep. One was of a little girl who was poor and homeless I think and I think it was called the candle girl or something but I remember be mesmerised by it. There was another I can really remember as well and I think was maybe the starting point of mine and Megan's fascination with magic and magical worlds and it was about a toy shop that would come to life at night and every time I think about listening to those tapes as children it just makes me smile so much. This love of audiobooks was increased when I went into my Year 6 class in Junior school (2001-2002) so I was turning 11 at the time, Harry Potter had just become massive even though I had been reading them since they came out but my teacher at the time Miss Bevan was obsessed with Harry Potter. Our class table names were Hogwarts houses so the smartest table was Ravenclaw, then Gryffindor, then Slytherin, then Hufflepuff. Nowadays I would definitely say I'm a Gryffindor but back then I was a Ravenclaw, anyway onto my actual point if our class had been really, really good we got to listen to Harry Potter for about 30 minutes and I absolutely loved it. Bear in mind this was just before the Philosopher Stone came out in the cinema so having Steven Fry's voice coming out of a sound system just ignited you're imagination like nothing had at that point. So if we wanted to listen to Harry Potter that week, we were good!

I actually don't have Harry Potter on audiobook and it actually kills me that I don't but I just don't have the spare money to buy all 7 books on audiobook, I would do it if Audible had them but the only way to get them is through the Pottermore store or extortionately priced CD's on various websites so I will survive is the moral of that story. 

Nowadays though I pay £7.99 a month through Audible and you get one audiobook a month which I personally think is really great value for money especially when some audiobooks can cost twenty odd pound. In the past month I have listened to 4 audiobooks. Three of those audiobooks are books that I have actually read and done reviews on previously; Beautiful Disaster, Walking Disaster and The Night Circus. All of them were brilliantly done and it keeps me happy and ignites my imagination as they currently don't have movies which I would love for them to have just a fyi. 

The fourth audiobook that I have most recently listened to was called "The Bone Clocks" by a guy called David Mitchell. I have never read a book by David Mitchell before so I had no idea going in what it would be like but I must say I think the audiobook was very well done it was read by 4/5 different people which I loved because sometimes it does get a bit boring listening to the same person reading to you so I loved that however that being said I still can't decide how I felt about the book itself. It was different to the books I normally read it wasn't what I would call a romance book although there were definitely elements of that in there, it isn't a supernatural/sci-fi/fantasy book either but there were also elements of that in there too. 

The book essentially follows a girl by the name of Holly Sykes from the age of 15 (1984) she's just found her 24 year old boyfriend cheating on her with her best friend when she has just told her parents to go stuff themselves and she can be with her boyfriend and live in the real world. Too proud to return home after discovering her boyfriend and best friend she decides to disappear for a few days to prove she's not a kid anymore. During those few days we discover that as a child Holly heard voices called "The Radio people" and made a friend with a woman who now she's older she just presumes was imaginary, we also discover that her brother Jacko is a bit on the strange side (all will be revealed later in the book), on her journey Holly bumps into a old woman who is fishing and because Holly is so thirsty asks if she could have some of her green tea and the old woman kindly obliges in exchange for "asylum" this becomes clearer later on in the book. Whilst on this journey Holly witnesses strange things which she later forgets but they always stay with her. We then jump through different peoples perspectives but it stays along with Holly's life, so next we go to 1992 with a guy call Hugo who is somewhat of a love interest and something else, then 2005 with Ed Burbank Holly's husband, 2015 the 2020's and finally in the 2040's. I personally am not entirely happy with how it ends I really just wanted to know how it ended for everyone and I just don't get that, we obviously get to know how it ends for Holly but there are some characters that the loose ends just don't get tied and that infuriates me to no end. All that being said it is such an intriguing read and something entirely new for me and I would completely recommend it if you're looking for something different. I would give it a 7/8 just because those ends really do annoy me.        

Have you been reading or listening to anything really great lately? Would you like me to do this more often? Let me know. 

As always, thank-you for reading guys and chat soon
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5.1.15

Enjoying the firsts...

Waiting for a transplant is boring, really boring and there are some who believe they can't do things just in case you get that all important call. I however have never really been one of those people, obviously it's hard to do everything you want to do because your body just won't let you do some things but I take a lot of pleasure in the small things. 

I have always wanted to experience "The Firsts" with my nephews and I am very lucky that I am close enough with my sister and nephews that I get to experience those types of things with them. Like Jaydon's first snow, first Christmases, first birthdays, seeing santa, all those lovely things and I like to experience as many of them as I can just in case. 

I got to experience taking my Nephew to his First ever Pantomime!!! As children me and my sisters always went with our Primary school to the annual panto, we always loved them they are some of my most vivid memories as a child, I think it's because it was so exciting and you weren't with your parents and you were with all your school friends and it was just new and exciting. It has been 12 years since my last pantomime though, it has always seemed like something you should take a kid to rather than a bunch of 20 year olds going along by themselves. So for Christmas I brought 7 tickets to our local Pantomime which was Dick Whittington this year. I know I've seen Dick Whittington before but I couldn't for the life of me remember what it was about, well now I know lol.


So My mum, Candice, Jaydon, Megan, James, Gina and I all went to the panto. It has to be the cheesiest thing you will ever watch in a theatre but it's the good kind of cheesy and the kids could get involved as well and I just loved it. It was a bit odd that the "cat" in it was a topless man (thank god he wasn't a rotund man lol), my mum had just said to Jaydon "Oh Jaydon a fluffy cat is going to come out" my nephew was however his cute little self and said "He's not a cat he's just pretending" it was the cutest thing ever! 

I wish Spencer had been a bit older but there is no way that he would have been able to sit still and behave himself for two and half hours. My Dad was working but we will book next years Panto and make sure he gets it off as Panto is right up my dads street. It took Megan and Gina a little while to get into it but by the end they were singing along and doing all the moves and we even managed to get a laugh out of James :-D

It is one of the firsts I have always wanted to experience with my nephews and I am so happy I got to. Hopefully I'll get to experience it with Spencer when he's a little older and then with Baby no-name who is on the way. 

As always, thank-you for reading guys and chat soon
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2.1.15

Jawbone UP wristband...

Happy New Year guys! I hope you had a wonderful New Year whatever it was you were doing. I personally brought in the New Year watching Graham Norton, Alan Carr and Celebrity Juice, with a minor gap at midnight to watch Big Ben do it's thing and the firework display by the London Eye on BBC One. I'm a "massive party animal". I've never really been one to celebrate the New Year not the way a lot of people do, I think the last time I really celebrated was when I was 18/19 and if I remember correctly it wasn't all that fun. 

Today however I wanted to show you something I got for Christmas. This is something I personally asked for and my parents kindly obliged and brought for me, it may not be of much interest to most of you but for those of you who are intending to get a bit more active this year or just be a bit more conscious of your health and activity you may find it mildly interesting. 


This is the "Jawbone UP wristband." It basically monitors your sleep and your movement throughout the day, I'm not entirely sure how it does it, but it does. It connects to my phone where my headphones would normally go and sync's with the Jawbone UP app which is free. 

You can set goals for the amount of steps you would like to do in a day, goals for sleep if you sleep too much or not enough and goals for weight. Now personally for me I wanted this not for losing weight as I am perfectly happy with my weight and so are my doctors, I wanted this because I need to try and maintain some sort of an activity level. Now we all know I'm not going to be doing 10,000 steps a day or jogging or running but I would like to just be that little bit more active. By doing so this will hopefully keep me be "fit enough" for when I get my transplant. I don't want to be completely incapable of doing anything when it finally decides to happen. 


I'm currently trying to aim for 2000 steps a day as I didn't want to be too over ambitious from the get go. At the moment I am finding that there are days where I can do 3000 steps but they are my busier days where I go out with my parents, or sisters of friends and they don't happen all of the time. On my quieter days I can only seem to manage about 1000 steps a day. So I'm trying to figure out a way where I can try to increase how many steps I'm doing on the those quieter days. I find the sleep monitoring aspect quite interesting because you can see when you're having sound sleep and light sleep and how much sleep you are actually getting. It's very clever. 

This app also links up with many other fitness app's if you're interested in monitoring your calorie intake and all that type of thing. I'm thinking this will come in very handy when I'm post transplant because I've heard steroids give you an appetite so I'll need to keep an eye on that. For now though this is perfect for me and if it can help me increase what I'm doing that will be great because I do feel like my physical ability is decreasing quite a lot and even though my condition limits how much I can do I can still try and increase it a little and safely. 

Is there anything you would recommend for increasing my exercise ability? Or anything you are personally doing? 

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