So, these last few days haven't exactly been the best in terms of my chest. This infection I have been trying my hardest to shake has really been kicking back and I know that had it not been for the extensive therapies available to me at home, I would probably be back in hospital again and back to waiting around for hours just for my pain meds or for something to make my chest feel less tight and wheezy. It's a completely different routine to me and at times I will admit it makes me feel uncomfortable and have been prone to a "fight or flight" response. The truth of it is, I just don't like having to give the reigns of my care over to people I don't really know and that is hindered by naturally distrustful nature (my trust is something that those close to me know has had to be earned) and not being able to be as private as I would like.
I don't like being so "on show" as you are in a ward. You're in a room with up to 5 people who you don't know, none of them know you and some of them will turn their nose up at you if you don't fit the part. I do try and be as polite and friendly as I can be but some people just make you feel like nothing is ever enough so I tend to shut myself down with those kinds. I never ever feel comfortable with sleeping in a room of strangers so I spend most of my time on my tablet reading or playing on the internet, until I can't stay awake any more and then I have to get some sleep. As a result of that I tend to sleep in the day (after a 6AM start, who could blame me?! Never was a morning person) and maybe watch a film or something. Sometimes the best thing for me is to find a distraction when I don't feel well, but there are times that that doesn't actually work for me.
These last couple of days are suggesting that things are going to go down again, but I am working my hardest (as is Natt) to make sure we can put that off as long as possible, preferably, I want to have made enough headway forward with the Ciprofloxacin when my MAU consultant appointment rolls around next Thursday otherwise the doctor is going to want to keep an eye on me closely for a few days. Last time I was in, luckily it was only 2 days, but the time before was actually closer to 2 weeks and by the time I got home, I was just so happy to be back in my own environment. In my own environment, I can sit in bed, watch stuff on my laptop (without the bother of headphones) and generally do what I like to do. I don't get poked and prodded every 4 hours (the most Natt really gets is a peak flow, check my sats and maybe check my temperature). That and if I fancy destroying some giant alien bugs, so be it!
I know I won't ever work again, not unless we could stablise things to the point where I wasn't admitted around twice a month and don't know how/where I'll be between days. Don't get me wrong, if you offered me a job that I could get to on my wheelchair, wouldn't get picky that I could be off work for weeks at a time and was something that I could actually do, then I would do it in a flash. I don't like being on benefits but understand that its a necessary evil and not something I chose for myself, more something I have to do because there really isn't a lot more we can do. I try and make the best of my days and fill them with interesting and stimulating hobbies. Some days I can do more than I can on others. Some days I can sew for hours and feel relaxed in doing so, other days I just don't feel up to much more than curling up and sleeping. It does all depend on how my chest has been really.
All in all though, I do try and keep things positive because by trying to just get on and live your life in spite of anyone or anything that tried to hold you back. It can be hard sometimes, I don't ever doubt that and heck, I have days where I feel low and like I want to throw in the towel and fall apart. But it's that voice in my head that tells me "No, not now. Not ever." that pushes me forward and makes me realise that in hurting myself or ending my life, I was just being incredibly selfish and thats something I never wanted to be. And you know what else? By making myself suffer, it means that all the people who wanted to do me down have won and they don't deserve that.
3 years ago