It's a new year, and a chance for a new start. I'm determined for this year to be different, to be better. That doesn't mean that 2013 wasn't an alright year, it necessary and full of new experiences and life lessons, but it certainly had a lot of room for improvement.
2013 was a year of new things. I was finally able to study the things I wanted to study and nothing else. I met lots of new people and made quite a few new friends. I found a strength in myself I never knew I had. And most importantly, I stopped being frustrated at all that is wrong and out of my control, and started focusing on the things I can improve and succeed in.
As this new year starts, suddenly there is so much more enthusiasm and motivation for making changes in my life for the better. People normally make new years resolutions, but I think I'll just name one area in my life I want to focus on improving. And with no contest, it would have to be my health. I think it's time to take it more seriously. To make sure I always take my medicine, even if I don't want to. To finally make that appointment that I've been putting off for four months. I need to tell more people about what's happening so I have the option of talking to people when I start wondering what the point of trying is, because nothing is changing. I need to consciously commit to changing my life for the better in all ways, by sleeping regularly, eating the right foods and adding a bit of exercise to every day because every time I've tried doing that before I stop doing it after a week or even a few days. I need to take time to relax every day so that I don't get too stressed by everyday life. Isn't it funny how one word, health, can involve so many different things and more.
It's going to take so much willpower and strength to actually follow this through, and I have no idea if I actually can. But a new year somehow brings new hope and determination, and right now it all seems possible and I sincerely hope that it is.
I did something to my wrist a few days ago and now every evening it starts hurting and my hand goes a bit numb and weird. I wanted to know what to do so I used a symptom checker on my symptoms.
Every single item was some version of a nerve problem. I suppose the lesser ones like carpal tunnel syndrome are possible but it's useless for me to worry about that now. I have exams for goodness sake! I definitely shouldn't waste time googling stuff. And it hasn't gotten me any closer to what's actually wrong with my wrist, there's just a lot of maybes.
Moral of the story: Don't google your own symptoms. It's always a bad idea.
It's strange. I'm pretty much completely functional. There's nothing stopping me from getting up and doing things. I don't have a physical injury or anything like that. It seems like there is nothing wrong.
And then obviously there is something wrong. People aren't usually in pain all the time. It's supposed to be a warning system, something that only comes when there's something wrong. It triggers some sort of instinct in our body to do something about it. Do something to make it stop. Find the reason and fix it. But what do you do when the thing that's wrong isn't fixable? It becomes a problem with no easy solution, if there is one at all.
What am I supposed to do? People aren't going to understand a problem that I barely understand myself. So I try to spend as much time as possible pretending it doesn't exist, and sometimes I succeed in forgetting... but it's only momentary.
I try being productive but almost don't have the willpower to be. I try doing nothing but I get bored very quickly. My mind needs to be active but putting aside all the distractions in my body and thinking takes so much energy that it isn't as fun as it used to be. There are so many thing I want to do and so many places I want to visit but getting there will involve pushing through so many invisible barriers that it almost makes me dread it.
If only I could be satisfied with less. If only I didn't have so many obstacles in my way. I'm completely in the middle, with not much of an ability to do things, but still with the potential to do things. Like a kind of limbo. And I can only hope that things will get better so this limbo will cease to exist.
I finally found a 10th anniversary recording of Les Mis. It is awesome and I keep listening to it. The people are such good singers that I don't think I'll be able to completely enjoy the movie version again. In comparison I really get why some people have been complaining about how bad the movie sounds.
Here it is on youtube:
I don't understand why some people feel the need to comment on other people's weight. It gives the idea that weight is extremely important even though it really isn't. Not unless it starts interfering with the most important thing which would be health, and even then it's none of anyone's business unless that person makes it their business.
The reason I'm writing about this is that this year I lost a bit of weight and some people have commented. Well, actually two people have commented that I remember although it could very well be more, and those people were my mum, and the lady in charge of my pilates class.
When my mum mentioned that now I looked really slim at first I felt happy. But that shortly gave way to the questions 'What was wrong with my body shape before?' and 'Did I look bad before I lost weight?'. It's such a backhanded comment to give, since it implies that something was wrong before the weight was lost.
That the lady in charge of my pilates class noticed that I lost a bit of weight was not so surprising since it is her job to look at everyone's body and check if it's positioned correctly. It is kind of surprising that she commented on it but I guess I have been going to the class for a while so there was a sense of familiarity. She just asked 'Have you lost weight?' which is probably one of the better ways of mentioning weight since she didn't ask it in a way that suggested judgement. The thing that I did notice was that she got an almost envious expression on her face, like she envied that I lost weight and made me think that she was unhappy with her own weight which is absolutely ridiculous because she's one of those extremely fit people and I seriously doubt that she's overweight. My reaction to this was disbelief. How can she be envious of my weight loss? She has no idea how it came about. It wasn't on purpose, it was a medicine side effect that made me lose all desire to eat food, even when I was extremely hungry. I was stuck between not wanting to eat because of no appetite, and needing to eat because otherwise I'd get a migraine. A complete lose-lose situation. I suppose she wasn't to know, but still...
The thing that annoys me the most about all this is that it's had an effect on how I make decisions. I was extremely torn when I had to stop taking this medicine that was doing nothing good for me and quite a few bad things because I knew that there was no point in continuing it and that it would be better for me to stop it, but I didn't want to put the weight back on and even wanted to lose a bit more so part of me wanted to stay on it. Now I'm on a medicine that has a side effect of increased appetite and weight gain so I worry all the time about gaining weight. Before all these comments I didn't think much about my weight. It was a healthy weight and I did plan on trying to eat healthier so I could lose some naturally, but I never felt any pressure to. Now I feel quite pressured to keep my current weight, not because I want to for myself, but because I feel as though I need to to live up to people's expectations of what 'looks nice'. It's like I didn't have enough to worry about...
When I was younger, I often read well into the night if I got really involved in a book, just so I could find out what happens as soon as possible. I remember the enjoyment in these times, and that even though I was tired the next day I was extremely satisfied that I finished the book.
Today I did exactly the same as I used to do. I started reading a book today, and kept reading well into the night. And the thing is, that was not quite as enjoyable as I remembered it being. It just gradually became less and less enjoyable until I was reading only because of persistence and stubbornness and not the need to know.
It's 2am when I write this and I've gotten used to the altered state that my body got itself into. I was going to go to sleep but then I got the idea for this post. I started wondering if I'd ever be able to read into the night with just a bit of tiredness the next day as a side effect, or even fully enjoy being awake while everyone else is sleeping. I wonder if I'm only remembering the good bits of staying up late in the past. I wonder if what I'm experiencing is completely normal and so everyone else feels the same and they know it's normal so no-one talks about it.
I don't think I know what normal is. This is my normal and I barely remember things being any other way. Sometimes I wonder if I'm just making the idea of something being better up.
What is normal? Maybe normal is a completely relative thing. Maybe I shouldn't question it. But just because I shouldn't do something doesn't mean I don't feel the need to.
Has almost come to an end!
After what seems like forever yet no time at all, I am in the last week of the uni semester. I submit my last assignment for the semester tomorrow and now have no obligation to do anything except turn up to one thing tomorrow and one thing on Friday so I can get a few more marks. So of course I am slacking off as much as possible.
I spent most of yesterday listening to Les Mis the stage show on youtube in my break and then later when I started feeling restless during my maths lecture. I had to stop just after the song 'One Day More' which is probably just as well since the musical gets really sad after that. I think music is all that's really getting me through this week. Without it I'd probably have some sort of mini emotional explosion because of all the stress and lack of sleep and general not-feeling-wellness. It's not as bad as last semester, probably because I paced myself better but the fact that it's still there makes me wonder if I can ever work things out so that it won't happen at all, or at least not beyond the normal 'I'm sick of studying' thing that everyone has.
As I write I'm wondering if I can listen to Les Mis some more during my maths session or if I'll just end up going home early instead. It's so awesome that that's all I have to worry about now :D
I spent most of today (yesterday actually, since it's just past midnight) doing music. The music-ing actually started on Friday night when I went with my family to a orchestral concert. I haven't been around orchestral music since the Speech night of my school at the end of last year, so it was really nice to get to listen, even if I didn't get to participate.
In the morning I had my piano lesson where I played and practised this epic Pirates of the Caribbean piano solo. I'm finding it really exciting now because I've almost got it perfect and up to speed and the combination of harmonies and the speed of it makes playing it so awesome.
After the lesson I somehow got onto searching sheet music for the musical Les Miserables. I found Musescore's site for sharing sheet music that people arranged themselves, and some of the Les Mis arrangements were quite epic. It's amazing what people can do, and seeing all that made me start making my own arrangement of a Les Mis medley for piano. It actually was more me copying and pasting bits of the melody from the orchestral arrangements I found on that site than actually writing it for scratch, but now I have a rough plan of how I want things and the melody for the first song down.
It's been so nice to give into my musical side and not worry about assignments and tests for a day. I wish I could for longer, but unfortunately the rational part of my brain is telling me that that would be a bad idea. Hopefully I can find time to do more between now and when exams finish in a month, but if not I still have the whole summer holidays to do whatever I want! :D
Invisible Illness Week was ages ago last month, but it's been taking me that long to write this. It's the 30 things meme, which is a list of 30 questions designed to share perspectives about invisible illnesses.
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
1. The illness I live with is: Chronic migraine
2. I was diagnosed with it in the year: 2011 (around the middle of the year)
3. But I had symptoms since: Chronic migraine: March 2011, Migraine in general: probably much earlier (2000) but I can't be sure if it actually was migraine
4. The biggest adjustment I’ve had to make is: Being more organised and planning ahead A LOT because I can't just go somewhere without medication, and when it's sunny, a hat, and I need my 10 hours sleep so can't cram the night before a test
5. Most people assume: That I'm completely fine
6. The hardest part about mornings are: getting up, especially if I'm sleep deprived which is very hard to avoid completely as a uni student
7. My favorite medical TV show is: either House of Grey's Anatomy, don't watch either anymore
8. A gadget I couldn’t live without is: my laptop. But that's just because all my stuff is on it.
9. The hardest part about nights are: when I realise I haven't taken my medicine or need an ice pack so I have to get out of the warm and comfy bed to get it, because I shouldn't/can't go to sleep otherwise
10. Each day I take 11 pills & vitamins. (No comments, please) this is what a SHOULD be taking, but recently I'm just going 'screw it' and just taking the ones that would make my body go weird if I suddenly stopped them (or so the label says)
11. Regarding alternative treatments I: really like peppermint and lavender essential oils. Also trying to exercise more because being fitter seems to give me more energy.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, because now I at least have the choice of not telling people
13. Regarding working and career: Not sure what's going to happen. So far uni's going okay, so as long as I don't get worse I should be able to be reasonably successful in a career.
14. People would be surprised to know: that I have chronic migraines at all. Someone recently said that they'd love to have my brain (because they thought I was smart). If they knew all the stuff that came with my brain... I doubt they would want it.
15. The hardest thing to accept about my new reality has been: that I have limits. The thing about being a teenager is that you seem to get the idea that the options are limitless... I had to learn that it wasn't true pretty quickly
16. Something I never thought I could do with my illness that I did was: cope with and even do well at uni
17. The commercials about my illness: make me want to throw something at the television
18. Something I really miss doing since I was diagnosed is: staying up late. Everything seems to happen late at night, but staying up late is really not worth it.
19. It was really hard to have to give up: doing everything. I like getting involved in things like music and organisations that I have an interest in, but it's just not possible to do everything I'd like to and I have to consider if any commitment won't drain me completely.
20. A new hobby I have taken up since my diagnosis is: blogging.
21. If I could have one day of feeling normal again I would: just enjoy it having fun. Go out and do something that gets my heart rate up. Completely savour the moments and try to imprint them in my memory.
22. My illness has taught me: to be grateful. I used to take everything for granted, especially my good health. Now I try to appreciate everything since nothing is ever
23. Want to know a secret? One thing people say that gets under my skin is: 'Oh, so you have a headache?' because if I the headache by itself I would not be feeling as bad as I do.
24. But I love it when people: don't question it
25. My favorite motto, scripture, quote that gets me through tough times is: it could be better, but it could also be worse
26. When someone is diagnosed I’d like to tell them: You'll be fine. It may not be the type of fine you want it to be, but you'll be fine nevertheless.
27. Something that has surprised me about living with an illness is: that it isn't the end of the world
28. The nicest thing someone did for me when I wasn’t feeling well was: just being sympathetic and doing something small to help me. The small things do matter. One time at school I was feeling horrible and went to sick bay, and the school nurse just told me to go in a lie down without even questioning me (she did know me by then) and it was just the way she was so concerned and asked me if I needed anything or to go home which was so nice.
29. I’m involved with Invisible Illness Week because: I feel that I need to share for my own sake. And I'm really late for Invisible Illness Week, but this still counts, right?
30. The fact that you read this list makes me feel: a combination of flattered and embarrassed that you even bothered
So today my body hates me. Normally it's just my brain that hates me so this is a bit out of the norm. Although I suppose it could still be considered my brain hating me even more than usual since the brain controls the body. My brain has turned my body against me :(
Anyway, now to get back at the lot of them I'm refusing to sleep. Which is kind of stupid since my brain and body are me. But somehow it makes me feel better (emotionally).
Yeah, I don't get my logic either.