The not so fun thing about having a disability and not being able to work is that people are often quick to make assumptions about what thats like. There's a big difference between not working because you can't or because you won't. The truth is that most people I know who are in the same boat as me would love to work and contribute to society. Being on benefits has a stigma all of its own and I've heard enough people complain about people like me having to live on benefits. I've been accused of being too lazy to work (I would love to see someone work when they struggle to do the basics, have to rely on oxygen and over 30 different meds). I've always sat down with people and asked them why they think that. Then I explain that my "job", if you like, is just staying alive. To tell my story and hopefully empower other people to be OK with not being OK. But I also want to help people to see that just because we have a condition, we don't need to be pitied or treated differently.
Don't get me wrong, illness isn't something pink and fluffy. Being in pain all the time isn't cute and when you pity someone or baby them, you make them believe that they're a victim somehow. Or (and this is actually grotesque) there are those who only feel safe or loved when they're getting sympathy so they actively seek it. I've always said to people that I am Wendy, Wendy has many things that make her interesting. However Wendy happens to have long term health problems but those are only a small part of her. It may sound weird but I may have to deal with a lot but there is something more in here. Something that is worth hanging on to.
My day starts with the usual checks, it's important for me to monitor my peak flow, symptoms and other signs as the slightest dip in anything can be the signs that something has started to happen and it's vital that we know before it becomes an issue. Peak flow is the most important thing to monitor for an asthmatic. It's a measurement of how well your lungs are working and sudden drops can be a sign that you need help. My peak flows are currently very low as I have a chest infection and it's a stubborn one. I know that any sudden drop off or shortness of breath is an indication that I could have an asthma attack unless we get on top of it. After checking to see what's what, I then take my first lot of meds.
My meds are hard to manage as the list is ever growing and I am constantly checking what I have, trying not to be too much of a bother by asking for things to be brought in and ordering what I need to (which often has issues with the pharmacy not ordering what I ask for or some other break down in communication) and the subsequent having to chase the doctors or pharmacist to make sure I have what I need. I don't want to be on meds, I just know that without them, there's going to be a lot of pain and the possibility of even dying without them. I don't like that I have to ask for help and I hate that I have to disturb Jace when he does things, it makes me feel like a bad girlfriend sometimes but I know that I can't really do it all myself anymore.
I try though. Every day.
My hobbies are keeping me sane. I love playing TCGs and I really love collecting the cards themselves. Making little animations is another thing I do (usually MMD videos) or drawing and sewing. It's true that I have a lot of hobbies to keep me busy but they're only possible when my body allows them. Recently I have had a bad chest infection that has pretty much limited me as to what I've been able to do. Pain is a real part of what I had to cope with and being breathless can add to that as well. It makes you feel like you're doing 4x the work. Seeing something you'd worked on come to fruition, even when you struggled with it, is such a great feeling. If anything, the struggle makes it more worthwhile. I'm hoping that things will get even more busy when club comes back though, especially now I'm a registered judge.
Being a judge is great! Since joining the roster, it has inspired me to take my game up a notch. I have a deeper understanding of the mechanics of the game and it's really opened my mind to new strategies. It's been an amazing journey and I can't wait for things to start up soon and I can start doing what I enjoy.
So what I want you to take away from this is the courage to live your lives, be happy and don't look at just the things that are wrong, take in the entire picture. Take in every detail, however small because there is always something worth working for.