Its been a difficult few days for us really. Not because of anything personal or anything like that but because it's been a challenge to keep my peak flow above (or around) 200l/min, usually anything below that is when things get difficult, my best is around 400l/min and anything below that is considered bad. Admittedly since being on oxygen at home, it's been easier to cope with and I'm not struggling as much as I was but then again we haven't been able to get above 250l/min for a good couple of years now unless I've nebbed and been given a ton of steroids. Before I had the oxygen I was unable to even move from bed to chair, each breath I take is never taken for granted. I never realised how much poor lung function could affect my entire body.
Basically if you have never experienced it, it is hard to explain how exhausting it can be. Imagine everything you do taking twice or 3 times the effort than it normally would. Then there's the tired feeling you get with it, like you haven't slept in weeks or months. Its hard to explain to people who don't know that those dark circles around my eyes aren't because of anything other than being so exhausted, and trust me, I have heard some bad ones, including being accused of being a "smack head" which was quite funny actually but at the same time it made me angry because I have never done hard drugs and I never will.
Jace has been fantastic in helping me with the attacks and pain, even sitting up with me in the early hours while nebs run through (and I am probably falling back asleep usually). The problem with having chronic chest infections is that it can be hard to work out the cause and sometimes you encounter doctors who are so oblivious to how serious things can get. Basically, what I have at the moment is a fungal infection which one of the doctors at the surgery (one who is renowned for being an idiot, I get called in urgently to discuss some bloods and then he dismisses it completely, turned out that I had been anaemic for the past 18 months or so, who'd have thought?) dismissed as "just a bit of thrush" and was "normal". My usual doctor said that when this gets in your lungs its never "just a bit of thrush" and could be dangerous. So its a month of Itraconazole and hoping that it hasn't taken too much of a hold on my system. Last time it was a "if this fails then we may have to look at other options" sort of situation so I really want to avoid that if I can. The fact is, when you only have about 30% of your lungs functioning and at less than normal with gas exchange, you can't afford to mess around with things. I know that something isn't right with my lungs but I just don't feel "that" bad if that makes sense?
It's hard for me to know when enough is enough. I live with this every day, I know the symptoms and what they feel like and I know that I probably put up with a lot more than most would even consider but if I didn't, I wouldn't have a life. My Facebook feed would be constant moaning about being ill and let's be honest, it's an t a positive way forward in life. Does this make my suffering less real? No. It just means that I'm not putting it on others and making them deal with it. I see it in "Spoonie" (sick people, look up Spoon Theory) communities it makes me feel frustrated that people are so obsessed with their illnesses, especially when they have no conditions in the first place (known as "Catfish"). It just trivialises the whole thing. Its hard enough having to deal with long term health issues but when people make it a joke, it's like adding a whole new level of justification to an already stretched situation. I know that you can't always see the battles other people face but when people knowingly outwardly lie, it makes me angry.
At the moment, my aim is to stay away from the hospital for as long as I can. I spent my last birthday in there and I really wouldn't like to spend yet another one in there, especially if it can be avoided somehow. I know it sounds silly but it was a difficult situation last year and despite friends and family, I still felt alone and having an attack that a more demanding patient wouldn't let the nurses deal with was even worse, I have never heard a nurse tell a patient to wait in such a plain way but I am so glad of it because it would have been a rotten way to spend an evening.
All I can say is thank goodness for the equipment and things we have at home.