I have been doing a lot of that "social" thing recently. Its so nice to actually feel like I can carry on my end of a conversation and hang out with the people I enjoy hanging out with. Admittedly today, I did have a long nap (one which I didn't actually plan on taking but hey) and felt so much more alert and awake afterwards. I was actually awake enough to play a full game of Smash Up with Natty and JP (who has come back from uni for the summer) and really enjoyed myself as well. I can't overstate this because I had been so used to not caring much about where I was or what was going on around me. It's not a way for anyone to be expected to live and I had zero quality of life. Even going out in my chair was a bit much and all I'd want to do was sleep and have a neb.
I can't sing praises of both my new nebuliser and my oxygen enough. The oxygen has really had such a positive impact on my life. I know it's a one way street really and it will become more and more a part of my life as I get older, I know this. I understand this. But as long as I get to keep my independence, I am happy. Don't get me wrong, I would have loved to be independent and not in a wheelchair but I am glad that I was given the opportunities to get things sorted to get moving. No one has to be a prisoner of their own home or their condition if they get the best support. I have good friends and an amazing boyfriend, I was shown what I was actually entitled to and how to get that and I have a good team working with me to try and keep things stable.
It really helps to know that when you feel like screaming, shouting and basically exploding, there are people there to help you pick yourself back up again. I don't have to, and I am not going to, go it on my own. My illnesses threatened to isolate me and leave me friendless and miserable but they didn't bank on me not letting them. I don't let ignorant people get me down and I don't let anyone who wants to hurt me do that. I had to learn the hard way, not everyone is going to like you and not everyone will agree with what you say and that's OK. You can't make friends out of everyone and on the other hand, a lot people who meet me after being told the "horror stories" actually realise what I am really like very quickly and there and then, I tend to make a new friend.
I know I am strong willed as well. I get this from my Mum. My Mum has an iron will really and whatever she wants, she tends to get it for herself and will tell you when you need to grab the world by the scruff of the neck, shake it down and get back up. During some of the more difficult times, it was my Mum telling me to do just that which has stuck with me. Don't like your life? Change it. Do the things YOU want to do. Don't focus on what another person says or does. Be the change you want to see. Forget the blame game, you are responsible for your own actions and the outcomes of those actions. Life is too short to spend wallowing in your own self pity and to be honest, I would find such an existence (because it isn't a life) is frankly a pathetic waste of a life. Yes we all have times where we want to feel miserable, but honestly, how long are you going to wallow in it?!
I'm not saying that we don't have downers. Heck I get them sometimes and during them, it hits home the things that used to bother me, and you know what the worst thing was? None of it really mattered in the end. Maybe it's knowing the stuff I know, but it isn't every day that you get a life changing diagnosis and it does make you re-evaluate everything in your life. The small, petty stuff doesn't matter anymore and all you want to do is make the best of the life you have. I'm going to live my life and enjoy it as best as I can. It has always been how I have survived from everything and came back with a brave smile and try again. I have done some pretty cool stuff in my time and I am not ready to stop just yet.
I am working through my list if things I want to do and my friends are trying to arrange something for me (they won't tell me what though so I am really wondering). I am working on not wasting a moment, I can't say how long I'll be here, but I intend on making that time as amazing as I can. Either through experiences and doing everything I enjoy (of course making note of limits and working around them, for example, if I went to a concert, I would have to be in the seating area instead of the pit because frankly I would die in the pit and oxygen tanks aren't exactly light!) as well as making memories with the people who mean the most to me and if that means that I have to be in a wheelchair with an assortment of weird medical equipment then so be it. Everyone needs a talking point I suppose and if people actually ask me, I will tell them what it is and what it all does.
I'm still struggling with this chest infection, I woke up at 7 this morning just to start a 3 hour session of coughing, bringing up green slime and trying as hard as I could to shift whatever the hell I could from my chest. I usually get this after a couple of days of antibiotics when I start getting the energy to do so. Sometimes with me, it isn't whether I bring stuff up, it's when I go from hacking up a load to not hacking up at all. It happens when I have no energy and when I get to that state, things are getting pretty bad and I have to see someone sooner rather than later. It becomes more shocking when I actually make the choice to go to the doctor off my own back.
Usually I will avoid this as best as I can, after nearly a year of being given no hope of any way of getting better, I stopped seeing the point in it. I think after it was my 6th long admission this year for my asthma (one where I stay more than 1 night in a ward) that I decided to try a different doctor and get a fresh pair of eyes on this. Turns out there IS hope and I am getting some help and things are getting better because of that. With the right help, on some days, I actually get some feeling of what well-being feels like and those moments are so precious to me.
2 years ago