I try not to put too much of my illness on here, but this is one of those moments where I think its a good thing to reflect upon. How I have kept myself going throughout all of this and how I intend to keep going until I can't anymore. I'm not one for feeling sorry for myself, it doesn't fix anything and makes you feel worse, I know, I tried to be "woe is me" once and I think that after a while, I was ready to give up and let myself go. Then I gave myself a mental bitch-slap, told myself to get a grip and actually LOOK at things for what they were. Yes, it sucks at times. BUT I do still let myself have fun. I'm always saying "I am not the first person to go through this, I am not the worst and I won't be the last." and its something I try and stick to, even when things are difficult and I feel like I can't cope anymore.
Although I don't plan on going anywhere just yet, I have given it some thought as to what my funeral and memorial should be. I don't think that I would want floral tributes as, pretty as they are, once they're gone thats it. Instead I would want my friends and family to donate a small amount of money to Asthma UK to support their ongoing work in to the treatment of asthma and perhaps make a cure perhaps if not in our lifetime but in the future. There has to be one out there and I live in hope that they eventually find one. I think the hardest thing recently was finding a child nebuliser mask. I thought about how small it was and I actually cried because I thought about how hard it must have been for those children who do suffer with this condition, their families and parents. It's hard enough for and adult to understand and deal with at the best of times, but a little child, that's just so horrible.
It got me thinking of recently was the effect of my illness on my life and how it sometimes affects those close to me. It's a hard one to understand from an outside point of view and it can be very distressing for people to witness because I can go from being completely fine and happy to wheezing, unable to talk or breathe and in the back of an ambulance within an hour and sometimes even faster depending on everything else (general state of health, stress, hormone changes) and it can be hard because often there is no advance warnings and I have asthma attacks every day. Some are small and a few nebs and some rest fix it, others can be life threatening and mean a trip to the hospital for extra help. Last year I nearly died 3 times but I was so lucky to have had the people who helped me and the friends who held me up at the hardest parts. No one ever tells you how to live with a long term condition. There isn't an "Asthma 101" course. We just have to "make do" and cope as best we can, and I like to
think we don't do a bad job. I'd go as far as to say, we do damn well considering the circumstances.
People don't really understand asthma, particularly the 2.6 million of us with severe or brittle asthma. A lot of people wrongfully assume that it's just a case of take an inhaler and be done with it. I can tell you here and now, life with brittle asthma is terrifying, confusing, isolating and uncertain. You don't really know how well you're going to be on any given day until you get there. Because you're only 1 in 2.6 million, it can be hard to relate to other people because they don't actually know what life is like for you and they may find things that you see as everyday quite bizarre and in some cases scary. I find it hard to be just like everyone else because I have to fit in multiple treatments throughout a day and I find keeping up with others difficult (especially when my scooter was away for repair) as well as living what you could consider a normal life.
Although I would love to, life with my condition (due to the variable nature and the fact it wears me out among other reasons) means that I cannot work. That was one of the most depressing things to come to terms with. Since the age of 16 to the age of 21, I was always either in work, college or actively seeking work. To be told that being unable to carry on with that and not really being able to live by myself was a kind of "rock bottom" for me. Growing up the way I have has always meant that I maintained my own independence in some way. That has always held some importance to me because I feel that as soon as I lose my independence that is when I'll just give up completely. I try and make the most of the days when I don't feel like I have been dug up and on the bad days, which are very common, I find things that make me happy. I try not to let the fact that sometimes I could be closer to the unthinkable than I would like to be get to me. It's always there in the dark recesses of my mind, but it stays there because I make it stay there.
To say it can be inconvenient is a bit of an understatement. When you have to drop everything, grab the hospital bag and go can be a complete pain in the arse. It's the nature of my asthma though. I can't really say that I have gotten used to it, its more like I just tolerate it because there isn't really a lot more we can do. I'm on maximum treatments and am even taking other medications for other issues which can be hard to understand. Managing this is a full time job. I have to do things at certain times and try and keep to a routine as best as I can to keep on top of it. The human body responds well to routine and knowing when you need to do something can be key to keeping control.
One of the worst things is when I get chest infections. This has been a permanent state for me over the last year or so. Basically there isn't much air going in to the lower part of my right lung and as a result it's pretty much dead space. We may have to consider removal at some point, it scares me. But I know that I will get through it with Jace, Becky, Natt and Bean all there to keep me going.
The main intention with asthma isn't cure, because there isn't one. It's control and management, keeping away from triggers (where reasonably possible), medication and generally taking care of yourself and knowing your limits. My asthma does scare me sometimes. It can be hard to understand for me sometimes, let alone anyone else who knows me and my conditions. It is like living on a knife edge and walking a really tough tightrope. You can be thrown at any time and you don't know who or what is going to catch you on the way down. That's why I feel lucky to have the people in my life that I do. These people have been there through thick, thin and thinnest and have always been supportive and caring. Not everyone has special people out there who support them and would drop whatever to just come and give you a hand to hold or a kind word when you feel scared or vulnerable.
But there are times when things get a bit too real for me. When my attacks start, I can be very quiet and disinterested to start off. It's kind of like being in a bubble and although you can see things you like on the outside, being able to reach out and grab them is incredibly difficult. After a while, that lack of interest is followed by the urge to sleep and prepare myself for it as best I can, I don't want to eat. I don't really want to talk to or be around anyone and tend to just keep myself to myself. I can sometimes get a bit stroppy and moody when I feel like crap, I don't know why that happens, maybe its a mixture of fear and generally feeling annoyed at the whole thing, as I say, I have no idea. Usually when I start acting rather erratically that's when we really take a look at my peak flow because that can sometimes indicate that I really am not feeling myself. We call it "Turtling" in the asthma community, meaning that we go at the pace of a turtle, taking our time and doing what we can to try and keep it at bay for as long as possible. But sometimes it does get to the point where you are metaphorically trying to put a sticky plaster on a broken limb and hoping for the best.
Recently Asthma UK asked us what one word we would use to describe an asthma attack, my word was "Terrifying." It is a rather scary experience because you can't breathe, you feel a bit scared and exhausted. Breathing becomes a constant effort and you just have to will yourself to keep going. Its really scary when that means you have to go to hospital. You're in an alien and intimidating place and fighting to breathe, you can't really speak and tell someone you're scared or in pain and it can make you feel as though you are in a room screaming loudly but no one can hear you. Overnight stays always get to me because all I can think about is going home. You miss the simple things when you're away from home, from the softness of a guinea pig's fur to that spot in your bed that has almost moulded to your shape and is the most comfortable spot ever. Its looking towards the light at the end of the tunnel that keeps me hopeful. I have found hope more important in all of this than any medication, pill or potion.
After my attacks, I tend to yet again, just want to curl up and sleep until I feel less crappy. It takes about a week to really recover from an asthma attack, unless you are one of the unlucky sods who have them often, not allowing the recovery of the last one. The best thing I find is not focusing on the negatives and find something to keep me distracted. Usually something technological or gadgety. I've been kept in place transfixed by a laptop, iPod, Phone or games console many times and I feel better afterwards. Sometimes it helps to kind of put your mind somewhere else and put your energy in to something else. Even if it is just a doodle or a Sims 2 place. It helps.
Those simple pleasures, sitting with your friends and loved ones even if you're doing separate things but you're quietly appreciating each other. Having a snuggle with a beloved pet or your favourite blanket/soft toy or anything else. Its a comfort to have someone or something to find hope in. Hope keeps you going even in the scariest situations. I have it tattooed on my right ankle in an "ambigram" design. It says "Hope" right way up or upside down. To me that is a reminder that no matter what situation you find yourself in, there is hope there if you care to look for it. It's not really a show-off tattoo. Its more of a personal reminder and something to bolster my inner strength. I got it at a time when I was a bit unsure at myself, actually before things got to the stage they were (I was 20 years old I think), but I was having problems with both my asthma and depression and was starting to wonder where I fit in life, I was about to leave home for the 2nd time and was about to live in my first flat away from any parental supervision. I look back fondly at that old place and remember that summer where a group of us lay out on the flat part of the roof, just talking about everything and feeling happy, even if it was uninhabitably cold in the winter (I think it got to -3 at one point). I do think that life is what you make it. Try and look at things from a positive and objective point of view and you can get through it.