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.
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...
At the moment I am in the middle of my mid-semester break from uni. One week to rest, catch up with study and with friends. A week away from the relentless pace of uni. A week with a chance to think.
I'm beginning to realise that I am not as fine and I'd like everyone to believe. The workload of uni is really getting to me. I can't seem to balance it and I don't know why. I don't have much time during the week and on the weekend I never seem to end up doing anything. Half of the holidays have gone by and I have barely done anything.
Most people I know seem to be able to do uni and keep a job, still having time left over for various parties and social get-togethers. Sometimes I can't help wondering if the reason I can't is because I'm lazy. Maybe I should be forcing myself to study even if I feel completely drained. Maybe what I call drained other people consider normal.
But that's the problem. I don't know what's normal anymore. Is it normal to be this tired all the time? Is it normal to randomly have no appetite some days or to have some days where everything is an effort?
What if it is? It would mean that I'm just acting stupid all the time. But if it isn't normal, it would mean that something is seriously wrong with me. And that's just too scary to consider.
I'm too tired for all of this. I'd say I'm too young for all of this but then there are eighteen-year-olds in worse situations than this. Which almost takes away any right I have to feel sorry for myself. Sigh.
I've been thinking about using an elimination diet for a while to try and improve my general health (meaning the migraines and random headaches that might be weird versions of migraines, since other than that there is nothing wrong with my health). An elimination diet works by eliminating the food groups that are potentially causing me problems and reintroducing them for a day and waiting to see if I feel worse or the same. If I feel worse I'll know I should stay away from that food group and if nothing changes I'll know that it's pretty much safe. The original plan was to start the diet after June exams this year but with school and everything it was a bit much to change my diet so drastically. Plan B was to start it after exams. Hasn't happened yet, so I'm going to break it up into smaller pieces and use the new year as motivation.
The plan is to make one change a week, starting from the new year. Firstly, I will take a week to get into the habit of going to sleep between 9 and 10 each evening and waking up at 7 or 8 in the morning. Then I will take a week to get used to finding time to exercise each day. Then I'll start with the elimination diet, eliminating one food group a week, starting from the easier ones and getting to the harder ones in time. I'm going to go by the suggested food groups to eliminate here (put in order of how I plan to eliminate them) which are food colourings, artificial sweeteners, high sugar products like lollies, chocolate, peanuts, dairy, wheat, soy, corn and gluten. After a month or so I'll start reintroducing the groups by eating them one day and waiting to see what happens. So, I'll probably finish sometime in June. It's definitely going to be hard but I'm determined to see it through. It probably also helps that by writing about my intentions here, the plan becomes more real.
So to make it official: I vow as my new year's resolution to start and stick with this elimination diet until the very end as well as to keep a regular sleeping pattern and exercise at least a bit each day.
At the moment my thoughts seem to be all over the place about a few different things.
The first thing started after a trip to a gardening store. They have this section with gemstones and and listed some of the properties of each gemstone. The one that grabbed my attention is amethyst. Amethyst has quite a few healing and calming properties which, in my current general mindset, sound tempting. To make it even better, there were bracelet for only $5, and small pieces of amethyst for $2. At that point I wanted to buy 20 dollars worth of stuff and believe wholeheartedly that wearing it and carrying it with me would magically make me a healthier person. There were a few problems with this. Number one, impulsive buying is never a good idea, number two, it would make me sound kind of naive if I bought the stuff, and number three, I had no money with me. Sure, I could have asked my mum for a loan (she was there too) but then she would probably think I was being impulsive. And a bit naive. And I totally would have been both at that moment. Although who knows, she might have been thrilled that I suggested a non-drug approach for feeling better and therefore have agreed no matter how crazy I sounded. Might ask later.
The second thing is something I have been thinking about for a while. Last time I went to the neurologist for migraines he gave me this script for a drug that would help me sleep better if I needed it. At that point in time it was just after holidays so I was perfectly well rested and so didn't go to a chemist and buy it. Now, despite me having 8-9 hours sleep a night since the end of school and 7-8 hours before that, I have slight dark circles under my eyes. I may be freaking out because it's so close to exams and I'm petrified that I'll be sick then, but that seems a little unusual to me. It's nowhere near as bad as it was at the end of term three (sleeping 10 hours but looking and feeling as sleep deprived as the people who were sleeping at 1am) but I am slightly concerned as it is pretty close to exams and if it gets worse I will freak out. This 'slight' concern is making me wonder if I should just start taking this medicine, at least for the exam period. But what if taking it makes me feel worse? This close to exams I wouldn't have much time to recover and it would majorly stuff up my revision. So really, it's a gamble either way and I'm gambling with my health and High School Certificate score. Yay.
The third thing is about magnesium. Somehow I started googling Epsom salts (magnesium sulphate) today and found out that they are reasonably priced at the supermarket. So now I want to buy some. I really, really want to but it's approaching 9pm which is a bit late. And I doubt my parents would want to drive me to the next suburb just to buy bath salts. Especially since we still have some at home. I guess I just want to know if the internet was right and the supermarket does sell them. It was listed in their internet catalogue but that doesn't mean it's in stock at the store, does it?
So that sums up most of my thoughts at the moment. Two cases of 'I want' and one case of 'I dunno'. And all of it health related and only one vaguely school related. I get the feeling I should be concentrating on school a lot more...
I think I may be guilty of being mean to myself. I expect myself to be able to do the things I'd planned to do that day, no matter what. If something does get in the way, I try and do everything normally anyway and get frustrated with myself when I fail.
Nothing seems to be a good enough excuse. If I'm sick, well, it's not like I'm in hospital or dying so I should be able to do it anyway. If I'm in pain I should be able to ignore it. If I'm just too tired and can't be bothered I wonder if I'm just being lazy.
Does this sound a bit harsh? Because for some reason it's what I expect of myself, even though it sounds absurd when I write it down. And that's probably because it is absurd.
The weird thing is, people I know expect similar things of themselves. They try to do a million practise exams and get upset with themselves when they don't do them all. They compare themselves to everyone else and don't seem to get that everyone has different strengths and weaknesses, and most importantly, that everyone one of them has something great and wonderful about them.
Writing that, I realise that it is so easy to tell people that they do too much and should not compare themselves to others, but in saying that I am technically a hypocrite because that is what I do myself. So, I need to make a conscious attempt at changing my own habits, because I can't tell anyone to change theirs if I am not making an attempt.
Be nice to yourself.
Let yourself rest when you are tired.
Put your health and well-being first.
Remember that sleep is not optional, but compulsory.
And make sure listen to your body and your inner voice.
Please, take care of yourself.
I'm sitting here wondering if writing this blog post is even a good idea or not. Like, it's the internet I'm writing to, and I'm not entirely sure how many people read this thing. But I decided I'd write on this topic so I will.
Somewhere in March last year, things changed for me. It was a really dramatic change, and to this day I have no idea why. I remember it clearly because it was a public holiday but I was going to someone's house for music rehearsal. Somewhere in the middle of that day I got a headache. There was nothing particularly unusual about this headache, and I'd always been headache prone so I thought nothing of it. But the next day it was still there. And the next day, and the next. After about a month I told my mum I wanted to go to the doctor. She didn't seem to see why I'd want to, but took me anyway. The doctor said that I was just overstressed and that she saw it all the time and I should learn to relax and maybe try getting massages.
When I think back to the rest of last year I remember it as a blur of negative events with the occasional positive. And I held onto that positive. I treasured the time I could spend having fun with friends because for a while I could pretend that everything was fine with me. But things were not fine and I had no idea what to do. I went to a few different doctors and eventually learn what to say so they would take me seriously. Finally I got a referral to a neurologist. I'm particularly proud of that. At the beginning of the appointment that doctor seemed like she was going to dismiss me as a stressed out teenager but I got through to her by keeping calm and defending myself logically. At last, progress.
I wasn't sure exactly what else was happening at that time last year. I think I was being quite self-centred for most of that year and I really hope I didn't offend anyone by not taking enough notice in what was going on with them.
I went to the neurologist appointment in the September school holidays last year. Those holidays haven't really been liking me these past few years. Year 10, I got 8 teeth out, and then medical stuff in Year 11. The appointment was pretty uneventful, except I got told that I didn't seem to have a brain tumour or anything to cause anything to be wrong but I could get an MRI to be sure which I said yes too, and the neurologist said that I probably had migraines and then prescribed some stuff as a preventative. I have to admit I was kinda foggy throughout that appointment so I was only kinda paying attention.
So next problem: my mother. Mothers are supposed to be supportive and all that, but mine just happened to have a grudge about taking medicine daily. She was worried that it would destroy my liver or something. So to be fair, she had my best interests at heart. I had to argue for ages but she agreed that I could take the stuff until after exams. (Yes, I did play the doing-well-at-school card.)
Turns out that preventative worked for me. I was really happy :) With it I was managing to have days in a row without a headache which was great. It helped my desire to study as well.
I managed to get through exams okay, but not as well as I would have liked. Considering everything, I thought I did pretty well.
After exams was Orientation for Year 12, which I missed because I was going on French Exchange :) All was good, except for the fact that my mum wanted me to stop taking the stuff that was making me feel better than I had since March. I didn't want to, but she nagged and nagged and nagged (she is so good at nagging) and eventually wore me down. Yay.
France was fun except my migraines were getting worse. I was annoyed that I let my mum talk me into stopping the preventative and worried about what it meant. Since I found out I had migraines I had been doing a lot of research on it. I found a lot of info, including a few things that completely freaked me out, and I can't remember exactly what they were so I guess my brain blocked them out. Sometimes I wonder if there is such a thing as knowing too much about some things.
After I got back to Australia I had a neurologist's appointment. I found out that I definitely had nothing visible wrong with my brain (MRI results were back) and he (the neurologist) asked if the preventative had worked. Awkward. I had to tell him it had but my mum talked me out of taking it. He seemed to look at me as if I was very stupid and said something along the lines of 'why would you do that?' My mum was still in Poland so there was no argument when I asked my dad to buy me the stuff. He has a bit more faith in specialists.
It took until a few weeks before midyears for the preventative to start working a little again. It still wasn't enough to stop the week of midyears from being a nightmare. It was partly my fault, as I stayed up late on Sunday night writing something which was a really, really bad idea. On the plus side, this year I knew about special exam arrangements and applied for rest breaks. I really needed those rest breaks during the chem exam and I think it was all that turned it from being a complete fail to kind of okay. It was awkward at the end of the exam when everyone was walking out of the hall and people asked me why I was still sitting there and I was wondering if the examiners would have thought I was cheating if I explained so I just ignored everyone. Hopefully no one took offence.
The next day's three hour exam was surprisingly good, probably because there was a surplus of time. That said, I was exhausted afterwards and had to take the day off the day after. That day was a weird day, where I got into this weird depressed mood because I felt that I failed all my exams. It was temporary and I was fine the next day.
From then on the preventative didn't improve things further. I started looking into triptans and tried one out. I think I may be sensitive to the artificial sweetener in it because I feel worse, then a little better. Now things are really the same, but I'm starting to wonder if I should start telling more people what's been happening, even though it's a potentially awkward situation. I guess this blog post is a cowardly way to start doing that.
So that's the story of my migraines in short. Makes a very long blog post.
It never fails to amaze me how quickly I get tired nowadays. Like, I do an hour of study in the morning and then end up doing nothing for the rest of the day because I'm waiting to see if I feel better later. And then occasionally I try studying and give up after five or ten minutes because it all seems too hard. It's weird.
I keep telling myself that it's perfectly natural to want to take a break from the stress of this year but the thing is, I don't actually want to be doing nothing right now. I want to study so I don't fail my exams.
Maybe I'm just sleep-deprived, but I've been sleeping 9-10 hours since a week before the holidays. If I have some sort of virus, it doesn't seem to have any outward signs and I probably should be seeing improvement by now. I suppose it's possible that I'm just being lazy. It really is the most likely explanation for everything. I guess I'll just need to try harder tomorrow.
Apparently brain fog is when your thinking goes "foggy", which for me usually means my short term memory gets really quite bad.
Today, I took bad memory to a whole new level.
This afternoon, I went to a local chemist to buy some epsom salts because I heard they could be quite relaxing in baths. My dad was waiting for me so we could go somewhere else, so my mission was to go in, get the salts, pay for them and meet him outside.
So, I went in, quickly found the salts, and quickly walked to where my dad was, outside the store, money in one hand, and the epsom salts in the other! My dad saw that I'd just walked out without making the side trip to the checkout and asked me what the hell I was doing. I realised instantly what was wrong and went back in to pay for the stuff, trying not to burst out laughing.
I suppose it was lucky there was no-one paying attention to what I was doing. If some security person had seen me walking out of the store with "stolen" goods I'm not sure how I would have explained myself. 'I meant to pay for it I swear. Look, I'm even holding the money for it.' or 'I forgot to pay for it before leaving the store. I know this seems like some line people caught stealing would feed you, but this time it's actually true.' They'd probably send me to some sort of asylum right then and there, either because they actually believed me, or couldn't believe I'd give such a ridiculous excuse.
Saying all that, this will probably be the highlight of my holidays. lol.
It is now holidays, which in Year 12 really means two weeks where everyone studies but doesn't have to go to school. I have printed off so many practise exams, and may not finish them all before next term.
On the other hand, there is this creative writing competition at my local library which closes next Saturday. Since it's a maximum of 1500 words, I still have time to write something for it, but it will take up quite a bit of time and effort which may be better spent studying. There is every reason why I shouldn't do it, and only one reason for it: I really want to.
The only problem is that I have no idea if I want it enough to justify the energy I would most likely spend writing, and re-writing, and editing. I get tired really easily, so if I decide to write something properly I'd need to set aside a few precious days next week where I don't do much study at all.
The sensible and logical choice would be to be a good girl and study for exams, but I'm getting sick of not doing things because that's the sensible thing to do.
So... should I be sensible, or do something which would be fun and potentially stupid?