I finished my home IVs today and to be honest I am both glad and a little concerned. We no longer have to worry about dangling lines, sore IV sites and the eventual pain of when the vein says "nope" and shuts down entirely. The thing is, I am not magically better which is what I am struggling with, the idea that my "baseline" has changed and things aren't bouncing back the way they were. This actually terrifies me because although I know that I am not as young as I was and my body has had to deal with so much over the last 8 years, it doesn't make it any less real.
People always say things like "You're too young..." and "I've never seen someone with your conditions at your age...." and I don't find comfort in that. I don't like it when people are overly sympathetic, I think that Squall from Final Fantasy 8 said it best when he said "Sympathy is a burden I don't need." and in all honesty, I don't need it. I don't WANT it. It doesn't make things better, nor does it change the fact that things are as they are. You see a lot of what they call "catfish" (people who try and lure others in with sob-stories and try and gain sympathy/relationships/even material gain) in support groups and it makes me angry. I get annoyed because these people are so wrapped up in their own fictitious misery that they waste the perfectly good opportunities out there. Maybe they are caught up in a kind of Munchausen's by proxy or mental health issues, I don't know, but lying about something and praying on a group of already vulnerable people is just awful.
Sympathy isn't the same as friendship.
Yes, it is nice that people show concern over me and I do see the good intentions but I often remind them that they don't have to feel bad for me. I don't feel bad for myself because I know that in some way I am making a difference somewhere. Even if it is by someone reading my blog (and I have had so many emails from people saying how they enjoy it and how it helps them) or Twitter feed.
I am not alone.
I am trying to do something positive. I publish this blog as a way of showing people that just because my body is giving me issues, doesn't mean that I am over and done with. It just means that I am more determined to keep proving myself as a person. I hate it when people who are genuinely sick have to go to great lengths sometimes to validate their lives or
"prove" their conditions. It's bad enough that we have to live with it
without anyone making that harder for whatever reason. I don't get why someone would want that kind of attention, personally, I hate it. I don't like people fussing over me and I like to get things done without complaining about how bad it was. If I posted on Facebook every single time I had a twinge of pain or a cough it would be the most depressing thing ever.
Instead, I try and think of good things to post about. Like the antics of the guinea pig/s (at the moment we only have one pig as Kaiba left us last week) or a project or game I am playing. I try and keep the good, positive things up because I want people to read my feed and see that there is light at the end of the tunnel and that there are things that can break through the harshness of having health problems. My advice for other people is always "don't let yourself become your condition." and it is something I do my best to keep up with myself. I have asthma, it doesn't have me. It doesn't consume my life and it isn't the only thing I think about. I don't over-analyse everything and obsess over monitoring (because that can only lead to paranoia and hypochondria). I try and enjoy my hobbies and post about those.
Sleeves on decks whether it be Yu-Gi-Oh! or Final Fantasy are important as you are handling the cards, shuffling them (and if you're brave enough to let others shuffle as well) and generally potentially leaving your cards (some of which can be worth staggering amounts of money e.g Legend Dissidia Sephiroth in holofoil can fetch up to £50 on eBay, I was lucky really with that one, I pulled a non foil and got a foil for a bit cheaper as the seller didn't realise what they were selling) to become bent, ragged and completely wrecked. Its a shame when you see a deck that has been completely ragged half to death by it's owner and the cards are so beaten up that they are coming apart, literally. Especially when you see how beautiful they once were. Obviously I keep all my cards sleeved (each deck has a sleeve set so theres no way of "marking cards or rigging what comes out) because I want to take care of them. I want them to last longer and I want people to see them when they are antiques and say "wow, look at the care these have been given."
Maybe it's because I was raised to appreciate things. When something broke when I was a kid, we didn't automatically get a new one. We had to repair what we had and treat things with care and respect. I think that a lot of our "throwaway" culture has come from kids being spoilt and things being automatically replaced once they were broken by rough handling or improper use. We don't just do it with toys or other things either, it seems that people even do it with living creatures as well. I could go on about it but at the end of the day, what will that do? I guess I want to inspire people to respect the things they have and, especially at this time of year, the people/pets in their lives because you can't just replace them that easily.
2 years ago