Sunday, 25 January 2015

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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Friday, 23 January 2015

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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Monday, 19 January 2015

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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