The Truth About Pain... Going, Going, GONE!

Hello there my lovely readers, 

So erm.... I'm tubeless. I am not quite sure how I feel about it either to be honest. It was all very fast and emotional. It was causing my throat to go all red and inflamed which was making it very hard to swallow stuff. I was also struggling when things were going through it, so I was unable to feed and only using it for medication. My specialist didn't think that I should keep it in just for medicine particularly as it was affecting other things. When it was taken out, it was... well.... was exactly in the best shape or looking great. It was clear that it needed replacing because it was an oldie and that could be why it was causing problems. 

Before & After..... 

Not having a tube there after a year certainly feels extremely weird. Every time I go to put up my hair or wash my face or even scratch my nose I expect to feel it and it feels weird when nothing is there. Even small things like when I do blusher, I have to remember that I can do it on both cheeks now (well that's going to cost me more cause I'll get through it faster... darn it :P ). It is nice not having to worry about getting the tape done every night mind you but if I'm totally honest, I miss it. Never thought I'd say it. My tube was my safety net. I knew that if I put medicine through it for sickness or even paracetamol that it would work... and fast. If I was having a bad day and couldn't manage much liquid, I knew it was there to be able to put that extra fluid through so I didn't get dehydrated. Although I was unable to feed from it towards the end (as it should have been changed), it was my safety for the past year! Now I am totally reliant on taking everything by mouth and enough of it. So much easier said that done. I try eat dinner each nice but once I've eaten, I can't move anywhere or do anything so that sucks. My dad usually has to help me crawl up the stairs to my bed after because of the pain I am in that we are still unable to control. It sucks!! My anxiety has definitely been high since taking the tube out but what can ya do eh? I  kinda want the tube back =[ 

Is it weird that when someone looks at me now, my mind instantly says 'what are they looking at? Have I got something on me?' yet when I had the tube, I didn't even think anything when they looked at me? Maybe I just assumed they were looking at the tube and became so used to it that I didn't even think about it, I don't know. But I feel more conscious when someone is looking at me now than when the tube was there!! Weird!! 

My mood has been absolutely EVERYWHERE recently. It's so unpredictable and changes faster than the weather does here in England. It's not cool and not fair on everyone around me. I feel bad but I also can't help it nor do I realise when I'm in a very bad and low mood. It's only when I feel a bit better that I realise and then feel horrible and mean :(. It all goes back to my post about the fact that a chronic illness isn't just physical, it's emotional pain too which sometimes hurts and affects you more.     I am so very lucky to have people around me who are sticking by me no matter how I treat them when my mood dips big time. I'm lucky they realise that it really isn't intentional and I can't help it right now. No-one is perfect and no-one can be happy and put a brave face on all the time. We all have days where we feel like sh*t and feel like giving up and maybe aren't as nice to people as we should be. But, that's allowed? Isn't it?...

 My pain specialist reckons I'm depressed and says he isn't surprised due to all my health problems and quality of life right now because of it. Depressed.... a word no-one wants to hear or talk about. Am I depressed? Maybe. Or is it just I have days where I struggle to cope with everything and feel extremely down and want to give up? How do you know which it is? Is it just a question of opinion? How do you truly diagnose it? Everyone is allowed to feel sad! Besides, when you are in that much pain or feeling that nauseous you are going to be in a crappy mood. You can't help but feel pain when it is that bad... but that is allowed is it not?!

I've come to realise lately that some people are extremely selfish and two faced. Oh, and childish too. It's something that we all know, but lately, I have really seen who I can trust or rely on and who I can't. Even when it comes to just being friendly. Some people can be extremely two faced particularly when it comes to my health. It comes down to partly not understanding but also just thinking about themselves. Just because you have a chronic illness doesn't mean you should sit at home and do nothing or do part time work or not do things you enjoy. Sure, sometimes you might have to adapt things or sit down and take a 5 minute break every so often. Is that really such a big deal? Plenty of people go take random 10/15 minute breaks every other hour to have a smoke and basically kill themselves and that's ok but to sit down for 5 minutes to catch your breathe if you're in pain or feeling sick isn't ok?  I am not going to start saying names (pretty sure you'd know if it was you) or anything but I just don't understand how people can be so nasty for no reason at all. So if you are sitting here reading this thinking it applies to you,  all I can say is if the shoe fits then maybe you need to step back and take a look at yourself long and hard in the mirror. I just needed to share this and make people think about it. Being nice and supportive to someones face and then going behind their back and being a complete bitch is really nasty and to be honest so childish. Just because someone has an illness doesn't mean they should give up everything if they are capable of doing it. ARGH... it just makes me so angry how some people just think of themselves and be so nasty towards others. It's a really horrible quality and won't get you anywhere in life. And breathe......

This is from a little while back now :)

On a more positive note, cheer is going great. I'm making some really great friends who are genuine and love the same as I do. I'm soooo super excited to get my uniform and have my first cheer competition. It makes me feel so good and is such a great way to release all my stress and anger whilst exercising my body. All I think about is cheer and can't wait for it to be a Tuesday evening. Sure, sometimes (most the time) I struggle a little towards the end of the session, but who doesn't? It is an intense work out which requires a lot of stomach muscles & energy 

HAHA.

I think that just about covers all of my updates since my last post. Nothing much is being done right now. My specialist has one idea up his sleeve but it is an extremely new thing and he has to check whether it can be done with my pacemaker. If it can we would have to turn it off though. :/ So, we shall see if that's going ahead and then I shall share all :)

Hope you are all well. Who's excited that it is Autumn/Fall? What is your favourite thing about Autumn? 

Well, Until we speak again...

Thanks to Louis Smith for helping to raise awareness!!

Keep Raising Awareness & .....

Stay Strong

<3