Today I went to my city's show, which is kind of like a carnival and nothing whatsoever to do with television. I had a lot of fun, but it wasn't the completely carefree type of fun since I had to keep paying attention to all sorts of things, like putting a hat on if it was too sunny or noticing and doing something about when the music is too loud. It was nice to be out with friends, but having to think twice about doing everything was a little bit stressful.
I'd say the best bit of the day was the food. There were so many nice things on offer, with some food booths even handing out free samples! I had a lovely ice-cream after lunch, which had the most awesome smooth texture to go with the taste.
I only went on one ride, a roller coaster, mostly because that's the thing that the majority of my friends wanted to go on. Through that ride I've confirmed what I only suspected before: I don't like going on rides anymore. Rides are made to give you weird sensations, like dizziness when you're spinning or that falling feeling for the rides that go up and down. I just find that my brain simulates enough of those without any external aid so rides are hardly going to give me much joy.
I think today was fun mostly because I was able to meet up with friends that I haven't seen for ages. The thing is, I can do that anywhere so although it's something different that I don't regret doing, I don't think I'll be going to the show again.
Is it strange that the small act of remembering/being bothered to take all my pills makes me feel more accomplished than anything else I've done for weeks? I'm finally sick of being sick of how things are, so it's time to start taking a more active approach to the whole taking care of oneself thing. Which means taking all the pills, not just the ones with the 'do not stop suddenly' label on them. I should probably also sleep better. And eat better, and drink lots of water, and not overexert myself, etc, but I figure two things is enough at this point.
I feel as though I should know better than to sleep weirdly or anything else on that list, but for some reason it's all so hard to keep doing. I don't really know why... or maybe I do.
I talk to people all the time about sleep. With teenagers it seems to be one of the most important things. We're generally all sleep deprived so lots of conversations revolve around how many hours sleep people have had, or how they're tired and could go to sleep right there. People don't seem to be sleeping longer than 8 hours on weekdays. One girl told me that she regularly has six hours sleep, and I wonder how she does it. If I sleep for only six hours I can barely function through the day. But then I have to remember that my body works differently... that less sleep generally means a bit of sleepiness for people, not an increase in pain...
So when I try to sleep regular hours each night, eventually I get tired of noticing the difference between how much sleep I need and how much others seems to get away with. I rebel, thinking 'to hell with all that's healthy, I want to do ____' and decide to stay up late one night. It breaks the cycle, and takes me about a week to recover completely, providing that I go back to sleeping right. Which I generally don't, because there aren't any instant results in the feeling better department.
It's something similar with not wanting to take pills. It's been two years since I've started taking preventative medicines for migraine and other than this one medicine that helps enough that I don't spend all the time going around not sure what's going on, there has been no progress. I almost think that there's no point anymore. I don't want to be taking anything, I just want to be better already. I store my pills for the week in a pill box that used to be a sign of hope but now just seems to be a sign of failure. It probably doesn't help that the writing on it is starting to rub off so much that I can barely read the names of the days anymore. Every time I go to take some pills (which is three times a day) I have to be reminded of the way things are (that is, if being awake had somehow not clued me in). So I got sick of how things are, and refused to use the pillbox, only taking the minimum amount of pills to not get withdrawal effects from the 'do not stop suddenly' medicines.
This had been going on for the last couple of weeks, until yesterday. Today is the second day of me taking all the pills I should be taking so I think it's fair enough that I should have a small internal celebration. And if that's strange, so be it.
I don't know what I'd do if I didn't live near the beach. Every time walk on it, or even just see it as I go by on the bus, it seems to fill me with an inner peace that I haven't felt for years. I think it may just be my happy place.
The beach is full of warm memories. Memories of laughter, mucking around with friends, family, my subconscious may even remember the time when I was a toddler and my parents let me run around on the beach, stopping every now and then to explore that part of the world.
The beach speaks to me of happy times, fun times, and all that is good. It just represents happiness and the act of forgetting the world for a while. All that exists is that moment...
Last week was Invisible Illness Week, and I was planning to write a post or two for it, but got caught but in the craziness of uni and was too tired to do anything towards it.
So many things are invisible. The world is full of people pretending to be completely fine when maybe in reality they are sad, depressed, in pain or feel lost because they have something going on in their life and have no idea what to do. And it's almost completely impossible to know who these people are unless they tell you.
I have an invisible illness. But I doubt that anyone looking at me would guess. To most people in the world I'm a completely healthy 19 year old girl, which in a way is completely true. My immune system is awesome. I almost never get sick in the regular way, with the flu or something other virus. I don't even have any allergies. My immune system may be awesome, but my nervous system definitely is not.
Migraines are basically the nervous system gone weird. Nobody's quite sure exactly how the nervous system goes weird, so the theory keeps changing. I won't got into it now but in essence, people are pretty ignorant about how migraines work.
If medical people aren't entirely sure what's going on, how can everyone else? There are so many misconceptions and judgments made about migraines that in the end people don't talk about it. I don't. Telling people opens yourself up to lots of criticism and/or ignorance. And knowing that, I have no idea how to start that conversation, even with people that I trust to not judge me on that.
I think it's similar for other invisible illnesses. If people can't see it, they tend to have doubts. It's hard to doubt someone with a cast on their arm that they injured it, but if after the cast comes off and it's long healed the person says they still have pain, I bet that even if no one said so, they'd doubt that the person was telling the truth. It doesn't follow expectations. Once the cast is off and the doctor says they're healed they have to be, don't they?
It's the same with so many other illnesses. People doubt because they're invisible.
"Think positively and you'll feel better."
"But you don't look like you're in pain..."
"Why are you taking so many pills?"
"You're young, you don't have to worry about that."
"Have you heard about/tried...?"
"Can't they give you something for that?"
I've had variations of the above said to me at some point in the 2ish years I've had frequent migraines. Usually by people that should have known better. They decided at the time that expressing their disbelief was more important than my feelings.
I believe people should learn to look outside the small view they see of another person and think of the possibilities. The next time you judge someone negatively, pause to think that perhaps they're having a horrible day with many bad things happening to lead up to that moment, or perhaps having to deal with something, day to day, that you can't even begin to imagine. People need to realise this for everyone's sake, because maybe they'll be in a position that's hard to understand one day.
Wow, I didn't know that was all there. All these words that want to come out, after so long of refusing to talk about the topic. And to think that all that was preventing me from saying this was fear of being judged. At least on the internet I can't see people's reactions...