Friday, 24 April 2015

One of those evenings...

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

Tuesday, 21 April 2015

Reoccurring dream...

picture source
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

Thursday, 16 April 2015

Finding Hope...

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