For life's little ups and downs.
I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.
I'll flap my broken wings and erase it all someday... You'll see.
Thursday, 26 February 2015
Sunday, 22 February 2015
One thing that people ask me about is the readings and numbers I have to check and keep an eye on and what those readings mean. Taking readings and clinical measurements is important when it comes to monitoring and managing a condition. Certain ones can show how serious things are.
The most important reading that any asthmatic should know and measure is peak expiratory flow. This is a measure as to how well your lungs are working at any given time and can point out whether things are suddenly getting worse. It is a reliable tool to show how well the medications are working rather than word of mouth. Its measured in litres/minute and a reading is taken by blowing as hard as possible in to a plastic tube or meter. I use an electronic meter device called a Piko-1. I find it more convenient and reliable than the plastic tubes you get from the doctors.
For someone my age, sex and height, a normal value would be 450 l/min. My personal best is 400l/min when I am well. My 75% mark (which indicates that I am starting to become unwell) is around 300l/min. Usually from here, I have to start being cautious and keep a close eye on things. If it goes below 250l/min, this is where we really start worrying and look at seeing a doctor asap. My 50% mark, anything below there is considered "critical" is 200l/min. Usually if things fall below there, I'm going to start showing signs of slowing down. My oxygen levels become unstable after the 150l/min mark and the usual protocol is to nebulise first and if things get worse or I drop suddenly, call 999 and get an ambulance. This is the point where things start getting life threatening so calling an ambulance is more than appropriate.
Calling an ambulance isn't something I take lightly. I'm not the sort or person who calls them for little reason and when they are called, they are always the first to say that I did the right thing, if not a bit later than I ought. I know a lot of people would say "its only asthma, why are you calling an ambulance out? They're for life threatening emergencies" and to them I say "my asthma is a life threatening emergency. Had I not made the call then I could have died." There's been times when the person who was with me has had to be warned that either an intubation maybe on the way or that there was a chance that I could die. Its a scary thing and knowing how close it's come does tend to make me worry but I try to do what I can.
Over the last few days my peak flows have again dropped to below the 50% mark and although I'm keeping on top of it, I can't deny that I haven't been at all well. I've been sleeping a lot, barely interested in food (its been a recent worry that I've not been asking for meals due to no appetite and my breathing has been worse) as well as a cough that's become quite weak. It'll be alright though, I know my limits and when things are getting too much I know what to do. Although I am really hoping it doesn't come to that.
Tuesday, 17 February 2015
I've been working hard recently on my drawings. I find drawing so much of a positive use of my time and money (I admit I do shop for the high end, decent materials because well you get what you pay for in quality, plus cheap stuff never looks good anyway). It gives me something to work on and when its done, it is heartening to have someone look at your book and enjoyn what they see. It makes me feel good and no one can ever take that away from me.
Right now, my project has been drawing the cute Pokémon characters I've come across in the game. I'm playing Y/X at the moment (I've completed the story of X admittedly) and I have hundreds of these cute creatures. When my carers come, I do like it when they ask if I've drawn anything new. I'll never be a manga drawing master but I'd like to think my work is at least making people happy. The only thing that bugs me is that the alcohol based markers I use (I use Letraset Promarkers) are a bit heavy on my chest. Its a shame really because the colour laydown is so smooth and they blend well. (Colourless blender pens, probably one of the most important as I use them to blend lines, shade and generally do with my hands what I used to rely on digital touch ups to do.) I do recommend them even if they are a bit pricey. As I say, when it comes to art equipment, you get what you pay for and these pens are brilliant.
I'm lucky to have something to just do for fun. I couldn't imagine what it would be like to not have my own place to belong and make my mark on. As I've often said, I may not be able to do much but I do like to do things properly. My lungs may be failing but its not going to mean the end. One day I'll get some new lungs and when that happens, I'll carry on making my life as good as it can be. I don't mope about the past, to be honest, I don't ever give the people who hurt me the satisfaction in even being in the background of my life. They don't exist in my life. They don't deserve to have any part of the weird and wonderful life I have and they don't deserve to make me feel miserable. After all, no one can make you feel inferior without your consent. Besides who would choose abject misery over the chance to enjoy life. I choose to live my life and do the things that matter to me. Life is short so we should make the most of it.
Natt will be moving on soon, I won't divulge the details as its not my place to disclose someone's personal details without consent. People are entitled to privacy. I won't lie, it'll be nice to have my living room back and when we finish doing it up, it'll be lovely. That doesn't mean that I won't miss having him around. The thing with a close friendship like that is that no matter what, there's always someone to have your back and you have theirs. It was good to help out a friend during their time of need. I didn't do it for anything else, just that he needed a place and I had room. To be honest, last year was a trying one for us both, we both had major health blows and we supported each other. And even when he's not living here, we won't be strangers. After everything, I don't think we ever could be. We are all like siblings here and we look out for each other. We have been friends for nearly a decade after all.
I don't think I could be without all my friends and family, including the furry critters. Its hard to imagine but my little Tenzou is 3 years old now. I remember when I first got him and his brother, how tiny they start out. I remember a time when I could hold Bumble in my hand and his ears were huge compared to the rest of him. Its weird to see my little fluffy boy become the cute, crazy little thing he's become. They're all special and they all have their own funny little characters. This is why I love them. The bunnies too. Ginger and Loki have grown up well from those tiny little kittens, and they really were tiny. Don't think my house would be a home without them.
I'm just hoping to get better over the next few days. My lungs have been full of muck again and I've still got the strange spots all over my neck, chest and back. We don't know what it is but it seems that whatever it is, its possibly reached a systemic level which could be dangerous so it may result in a trip to the horrible place but I don't want to say too much. If it happens it happens.
Sunday, 15 February 2015
I had been planning a valentines day with Jace. It was disappointing that this couldn't go ahead because of my chest and my body coming out in a nasty rash (itchy, burning AMD blistered) but it didn't mean that there was any love lost. If anything, Jace showed me love with sweet messages and generally being there for me. The distance thing is tough though and my physical limitations can sometimes make things tougher. But in a way, the fact we're still together and as in love as we ever were makes me appreciate him more. We have had times where its been rough, last Christmas was probably the worst because I was stuck in hospital. Unfortunately that is a recurring thing and nothing apart from new lungs one day will fix it.
I'm lucky to have people around to offer love, compassion and support when its needed. Even if it's just popping in to the bedroom to ensure my comfort or going up to the local shops. When I think about where I was emotionally just 4 years ago and compare it to now, I realised just how far I've come. From browbeaten and miserable to bold, confident, independent and happy. It has been a heck of a journey, one where I had to accept that this is what my life is, but a journey I am glad to have taken. That's why I now venture out of the house, yes in my wheelchair and yes I have my oxygen on, and hold my head up high and feel proud.
I love my wheelchair, the one thing it has done for me has its given me my freedom back. Walking around town lost its fun when my lung function started to fail. Limping about as much as possible and then having to go the long way back on the bus just so I could run a nebuliser through. I remember the first time I used a scooter in Tesco. Becky and I were doing our shopping and thought it better as I'd just left hospital and could barely stand up. Since then I've gotten more confidence. I've been using a scooter/wheelchair for nearly 2 years. Its made a difference and I'd like to think that even with morphine on board, my control is excellent, also been told that by others so I have to be doing something right. I've not run in to any one, deliberately (not that I ever would? I mean who would deliberately knock some one over with a wheelchair, there's got to be something very wrong with someone to do that kind of thing) or otherwise. When I'm in control of that chair, its my responsibility to make sure that I, any company I have, and the surrounding people are safe.
Today seems that I'm feverish and drowsy. Kind of part being poorly but still it isn't really nice to feel like you've been burning up. I think the worst thing is how draining it is. It'll get better, just need to fight the infection off then the inflammation and fluid will go away. Just got to take it one day at a time.
Wednesday, 11 February 2015
Recently I have been using an old method of keeping my mind off the things going on around me. Some people turn to drink or drugs when things get them down. I used to cut myself when things got too much to handle (it's been 2 years since I managed to stop that, which I am proud of, admittedly I have had moments where I was close to relapse but I kind of gave myself a internal ass-kicking for that) or starving myself because I wanted to be "perfect". I do sometimes go back to the eating disorder side of things and I will admit that I haven't really wanted to eat much, but the way I see it, I don't really do much at the moment but I am trying to make sure I do eat at least once a day. Its not helped me that I've had pneumonia again and while being vulnerable I've picked up a possible case of shingles. Would I be better in the Alex? Possibly but its a double edged sword, I'd be on a ward where I'd be susceptible to all kinds of infections (particularly on a medical ward).
One of the biggest ways I have coped with my life and the barrage of illnesses that I have had to deal with is through my art. Even if its just drawing a character from a book or a game, there is something cathartic about the expression of pencil on paper. I recently brought myself some posh, high quality drawing stuff. I have loads of drawing stuff anyway but sometimes splashing out on something nice can really inspire me to do more. It was because of Becky that I really started to blossom artistically because she basically stopped me tracing things through the laptop screen (I took down all the traced work and was surprised with the stuff left over). She taught me to believe and have confidence in myself (cheesy, I know) and what I can do. To me, that is the most important thing, having someone have faith in you, someone who sees you even on the days when you want to be invisible. Since breaking my hand rather impressively, I got these pains in the knuckle and had to retrain my hand again to draw. In some ways it's changed how I draw and made me better at it.
I could so easily have given up with everything when it got intense but to be honest, I am glad I didn't. Sticking it out proved to me that no matter how hard things get, the people you care about most that are the ones who keep you going. I think that without the people in my life who were always there with love and support, I wouldn't have gotten to this point and lived to tell the tale. They were the ones who would pick me up when I fell over. They were the ones who would give me a hug, tell me it's alright to get scared or upset and they were the ones who then helped me move forward. I do consider myself very VERY lucky that I have people like this in my life and I am not ever really dealing with everything on my own. Not really. Even if I try locking myself away, people can still find me, help me and, to my bemusement, love me. Even on the days when I couldn't even like myself.
So it looks like Valentines for me will be spent in bed and not passing on whatever I have because I don't want it! I don't want to share it! Maybe with a couple of box sets, maybe snuggled up and keeping myself comfy. I'd prefer to spend it with Jace but as chances are, this is contagious, it's not worth us both being sick.