I'm writing this now instead of this brief for a project I'm the head of in the uni chapter of this volunteer organisation I'm a part of that I said I'd have done by tonight. I'm not sure entirely why I'm updating this blog now, though I might not get the chance to for months once uni gets even busier than it is currently.
The last few months have been a bit of a rollercoaster ride, one that I'm still on I suppose. I'm actually starting to wonder if I ever will get off it. The summer holidays were a bunch of medical appointments with a few catch-ups with friends in between them. It wasn't very restful and I could have used some more time before uni started up again. I have finally admitted to myself that I cannot be described as healthy. As much as I hate to use the word, I'm sick. My symptoms for migraine are crazily out of control and seem to be getting worse. I'm tired all the time, even if I've technically had enough sleep. I haven't felt well rested after sleep for quite a few years now. I'm in pain all the time, and I can't keep lying to myself saying that that is 'normal'. Lately, especially after exams finished, I haven't felt like eating. December was horrible for that and I have lost quite a bit of weight, though my weight is still in the healthy range according to BMI. My mood isn't very good either, and has actually gotten scarily bad a few times. And I'm not entirely sure why that's happening. It's like, am I depressed, is this just a normal reaction to everything else that is going on, or is it some other thing I've never even heard of?
I wish I could say that is all. The last few months (minus last time which is actually kinda reassuring) I've been getting cramps as far as 10 days before my period, which apparently could be completely normal or something to be concerned about. I mentioned it at two different doctors appointments (with different doctors) that were about something different just to see if it was a cause for concern, and they had the same opinion: that it could be absolutely nothing but there is this thing called endometriosis that sometimes happens. Hearing the second doctor admit that possibility was quite terrifying, especially since I've heard of that condition and it sounds horrible. The second doctor saying it also made it more of a real possibility, One person's medical opinion can be dismissed as being potentially wrong, as they are only human, but someone else agreeing with them really does back it up as valid.
So I suppose those were my summer holidays. Appointments. Trying new drugs and treatments. Having side effects to those drugs and treatments, including one extremely scary and unpleasant one that has made me nervous to try any other anti-nausea drugs. Trying not to let the emotional rollercoaster overwhelm me. And the occasional bit of face-to-face socialising.
Sounds great right?
But anyway, now holidays are over and I'm starting uni. It's gotten really busy already, though it probably doesn't help that I'm a project head this year. All my subjects are really full on, like I spent 9 hours (it was supposed to be 10 but I forgot to go to a tute in my Friday fatigue) going to physics classes and labs alone. Third year PDEs looks like it's assessment-heavy, and French is quite a step up from last year. And I'm doing design as my eng subject. Design is ridiculous, with quizzes before each lecture and homework to do after each lecture and a CAD task every week along with our design project which we are expected to be working on constantly in our teams (all this stuff is assessed). The design project is actually really hard, with 17 pages of rules and diagrams for the competition we're entering as part of the subject. An alternative to that is joining the motorsport team, who builds their own car to race, which is by application and interview only. I applied and am not sure if I want it or not. Apparently the time commitment averages at 20 hours a week which is quite crazy, but it would be so awesome to join because of the opportunities it would bring. Am I crazy for applying with my current health situation? Probably. But I guess I was never very good at saying 'no' to things (including opportunities that come my way). I wonder if this year will be the year I learn to say 'no' to things. Like, last year I learnt how to delegate and let someone else do something, as well as how to accept help a bit better. I've already started to say no this year by saying I can't go volunteer at a event even though I'm technically free. I may be free, but I need that time to rest and do other tasks such as doing assignments and other uni work.
I guess that's it for now. I still need to write that brief for the project I'm in charge of and I'm starting to get sleepy. Spending time writing all of this is possibly a huge waste of time and energy, so hopefully it was at least kinda therapeutic for me. I think it might have been? It's hard to tell.
*presses post without a proper conclusion at the end of this rather long kinda disorganised thing*
It's been a crazy, kinda overwhelming week. On Monday I had an appointment with a new neurologist. I'd been mildly freaking out about it to a friend on facebook and she ended up offering to go with me. I'm really glad I accepted the offer because it ended up being less scary with someone there that was asking questions about treatment options and was thinking more clearly than my freaked-out, migrainey self.
The appointment itself didn't go to badly. I was given three choices: stopping Inderal which is actually helping me and trying a similar-acting drug in the hopes it'll have even better results, starting Gabapentin which is an anticonvulsant and as a result has a load of annoying possible side effects, or getting the Botox protocol for migraine which involves many (31) small injections. I completely refused to stop the Inderal (it's the only thing keeping me in uni!) and couldn't decide between the Botox and Gapabentin during the appointment. So I was given a prescription for the Gabapentin and told that if I wanted to have the Botox all I had to do was make an appointment.
After the appointment I went shopping with the friend which was nice. I didn't particularly want to be at home doing nothing after that appointment. We went home after we ran out of stuff to look for. I went home and after about an hour doing nothing in particular on the internet I got an email from my mum. My mum went to Poland a few weeks ago to give her family there a break from looking after her sick father. The email was to say that he'd died, and asking us to ring the next day. I never got a chance to know my grandpa too well since we are half a world apart from each other, so I mostly just felt sadness at how he died and that my mum and her side of the family were now grieving, and a bit of regret that I'll never get a chance to really know him.
I spend the remainder of the week trying to finish my online course (and failing since I really wasn't in any state to do that), and being overwhelmed at everything. I went to choir practise (twice: the uni a Capella choir and the church Christmas choir) on Wednesday which was nice, and I went shopping with friends in the city on Friday. I managed to submit everything for my course by the end of Friday, and by Thursday night after much googling and asking on this online group about people's experiences with the two treatments, I had pretty much decided that I was going to go with the Botox. Friday morning I actually made the appointment so now it is set in stone (well, I can technically cancel it but as far as I'm concerned it's happening). So I guess it's been a crazily emotion-filled week with lots of up and downs, and I think that makes any things I've accomplished this week, however small, all the more awesome.
Things have been weird lately. Just really full on, in terms of things to do, but also emotionally. Semester 2 at uni has been really really busy, with group projects and assignment after assignment due, usually more than one a week. I suppose it didn't help that I started semester 2 exhausted, needing to take naps most days to make it through the day. I don't really know why, it could have been a side effect of a increased dosage of one medicine or just me not being completely recovered from being worn down last semester.
I eventually adjusted and wasn't so tired all the time, which is awesome, but eventually new stuff came up. My average pain level increased, leaving me really tired after each day because of the effort of functioning like that. Ironically, I also stopped being able to sleep properly. When I do sleep 'enough' the quality of sleep must not be so great because I still feel tired after waking up. I can sleep for 11-12 hours and still be tired. It's ridiculous.
Luckily, not the semester's over, and I survived, so that's good. The exam period hasn't been particularly nice either though. I quite a bad virus the weekend before my first exam. It took me almost a week to recover which means I had to reschedule one major exam and my French oral, as well as get a extension for this one assignment.
I haven't been feeling like studying lately, so I've been studying way less than I should be for exams (but at least I studied a bit), and watching a lot of TV and movies. I managed to finish the current season of House and NCIS I've been watching, and also watching If I Stay and re-watched The Fault in our Stars. I think If I Stay is an amazing movie, I just connect with it completely, possibly due to all the classical music references and the mix of good and bad that's represented in the movie. I suppose I think life's a lot like that? There's good and bad and you just have to cling onto the good and try to cope with the bad.
The annoying thing that's happening lately is that my pinky finger on my left hand started hurting when I bend it, and now my wrists and various other parts of my hands have decided to join in with a reasonably mild pain. I tried playing piano with it and I was too nervous about it to push things too far so couldn't just mindlessly express the emotion in the music like I try to. I really hope that this doesn't become a permanent thing. I don't even know if this is enough to be worried about, but I already have one chronic illness so I guess I've lost that misconception most people have that illness is something that always goes away and that young people are always healthy. It makes life kinda scary, and there isn't anyone that I know of that I can talk to about this. Most people wouldn't understand. Like, I do know people that would be really nice, but that's different from understanding and being able to relate.
So I guess that leaves me doing what I'm currently doing. I want to change neurologists because my current one is an idiot, so hopefully the next one is better and there can be some kind of breakthrough. I'm kinda sick of the current set of circumstances, and could use something going my way for a change.
This video may not seem like it's at all important but it carries a message that people should see. Especially doctors and/or medical students. This or something similar should be part of every medicine course.
Today marks the beginning of Invisible Illness Week, the week that was created to raise awareness about invisible illnesses. Approximately 96% of illnesses are invisible, which means that it may be impossible to tell the difference between someone with an invisible illness and someone who is completely healthy. Hopefully this week will serve as a reminder that it is important not to judge people on how they appear to be, because you don't know what it's like being them.
I've answered the 30 things meme to start of this week. I hope to blog more this week but I'll see how busy I get. The fact that this post has broken my long hiatus from this blog should tell you just how important this is to me. I encourage everyone to have a bit of
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
3. But I had symptoms since: have had suspiciously migraine-like symptoms for as long as I can remember
4. The biggest adjustment I’ve had to make is: realising that I actually have to go rest even if I feel like I haven't been doing much or other people are still keeping on going
5. Most people assume: that I'm completely healthy
6. The hardest part about mornings are: getting up, especially after less than 9 hours sleep. I really can't handle being sleep deprived anymore.
7. My favorite medical TV show is: probably House
8. A gadget I couldn’t live without is: my iPhone. I can be in bed and still can go on the internet :)
9. The hardest part about nights are: remembering to go to sleep on time. It's especially hard when I should be going to sleep at 8pm because that's just so early!
10. Each day I take 14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: love using essential oils, especially lavender. Lavender essential oil is amazing!
12. If I had to choose between an invisible illness or visible I would choose: probably invisible, purely because of the 'better the devil you know' philosophy
13. Regarding working and career: I hope to have a career in something and to be able to work in the future, though I can't say for sure that my health won't deteriorate and stop me at some point. But really, that could happen to anyone, no matter how healthy they are at the moment.
14. People would be surprised to know: that in a way I am grateful to have had this experience of chronic migraine because of what it has taught me. It's been kinda like an accelerated class on life lessons.
15. The hardest thing to accept about my new reality has been: just how fragile my body is. So much can go wrong and change your life forever. And no one is immune.
16. Something I never thought I could do with my illness that I did was: be happy and have a full life. Things may be quite a bit harder now, but they're still possible.
17. The commercials about my illness: are stupid. I'm really talking about the general painkiller ones because there aren't any that I've seen specifically for migraine. The ones that go 'who has time for pain? no one, so take our drug which will definitely help!'. Those annoy the hell out of me.
18. Something I really miss doing since I was diagnosed is: being carefree. I have to constantly worry about how I'm feeling so I can keep from increasing the level of my feeling horrible and I just rarely get a moment when I can forget about everything.
19. It was really hard to have to give up: my grades. They are quite far down the priority list at the moment.
20. A new hobby I have taken up since my diagnosis is: watching tv shows on my laptop. I never used to because I had other things I'd rather be doing, but it really is a good activity for low-energy days.
21. If I could have one day of feeling normal again I would: probably study. This may sound weird but I'm not even kidding. I miss how effortless thinking about things was.
22. My illness has taught me: that sometimes it's impossible to do everything on your own, and that it's important to take care of yourself before trying to take care of others.
23. Want to know a secret? One thing people say that gets under my skin is: 'I don't like to take painkillers/medicines.' I don't have an issue with their personal choice, but the way people usually say it gives me the impression that they think that taking medicines is bad/weak.
24. But I love it when people: do something to show they care. Like literally anything makes a difference. Sometimes these things are the best thing that happens to me all day.
25. My favorite motto, scripture, quote that gets me through tough times is: 'everything is relative'. I have no idea if someone has said that somewhere, but I find remembering this is important. Not everyone has the same definition of something. If you're talking about electrons then a uranium nucleus is as large as a barn. If you're talking about astronomical distances the moon is ridiculously close. Likewise, for some people something may be an achievement that someone else takes for granted. It's pointless to compare yourself to others because it's all relative.
26. When someone is diagnosed I’d like to tell them: that eventually you will be okay. It may not be the type of okay you'd like, but it will be okay nevertheless.
27. Something that has surprised me about living with an illness is: that I'm still doing things.
28. The nicest thing someone did for me when I wasn’t feeling well was: just listen to me complain without judging.
29. I’m involved with Invisible Illness Week because: once when I was telling a friend about having a migraine all the time I was so nervous about their reaction that I was shaking
30. The fact that you read this list makes me feel: a bit embarrassed, but kinda happy as well. Thanks for bothering :)
Uni so far has been both awesome fun, and extremely tiring. I've been on campus until 5 or 6 each day, starting in the morning, and have had most of my breaks taken up with things, so there has not been much time to relax.
This week I had my first French assessment task (which was probably a disaster), my first proper Physics lab, my first Maths quiz (I may or may not have failed), and on Friday my first engineering practical class.
Physics was kinda awesome. We got to use a platinum thermometer, but had to calibrate it from scratch. Well, we didn't do a great job with that because our calibration was 50 degrees C out from the expected value. We weren't even close. But, the good thing was that while out data was out, it was consistent within itself and created a near perfect line so we technically proved the law.
Not much else of interest to say. I have lots planned for Friday, including two meetings, one for Engineers Without Borders, and one for French Club. I am now the head of one of the (minor) projects in the EWB group, so I will probably be more involved in that from now on. It will also take up a bit of time (not sure how much yet) but I suppose it's good practise for any potential career.
So that's about it. This semester should be busy, stressful and kinda fun. But then, that's uni.
It's been three days of uni and already I'm exhausted. The idea of studying triggers an extremely definite 'no' from my brain. My subjects all look interesting (and kinda hard) and I am slightly intimidated by the workload and how much thinking I'll have to do in such a short space of time, but hopefully it'll make my brain better at processing things. I know last year did.
Currently it is 7pm and I am still at uni since I used up all the internet at home and my mum has an online lecture so we're both here doing various things on the internet. These last few days have all been like that. I've been trying out some new clubs since I actually want to do non-studying things at uni too! Monday was Debating which I left at 6 so I got home kinda late. Tuesday I tried out the uni choir which I don't think I'll be going back to, mostly because I get the feeling that it caters more for the people with 10 hours a week of classes. I got back really late from that; I was home at about 9 and then proceeded to watch tv for another couple of hours before getting up at 6:30 the next morning. I guess that's probably the reason for my recent exhaustedness and even more of a reason to be more sensible and not take up too many things at once. This whole pacing thing never gets easier, even though I am extremely aware of my limits. I always feel like pushing the boundaries.
Today my wish for a choir that doesn't have ridiculous rehearsal times was answered. I was meeting up with a friend today and she had an impromptu choir meeting so I ended up coming along. Technically the choir is supposed to be only for medicine students since it's part of their student society, but I guess they really don't mind if I come along as long as they aren't suddenly overrun with non-med people. It was nice to sing high again, but since it's been so long I don't think I was much good.
I keep thinking about how much work I have ahead of me this semester and I keep doubting I'm up to it. It's going to be quite a battle trying to learn all these new concepts, a battle I'm not really used to. I think the thing that really does it is the thought of six exams at the end of the semester. Having to do all the prep and having to sit so many exams, even some of them aren't worth much is kinda intimidating. I think physics freaks me out the most. I'll have five hours of exams (though not in a row) which is a lot of time to be spending on the one subject, especially when I have two more (and possible three but I don't know yet) demanding subjects to study for too. I guess I should have known it would be like this considering my subjects, but somehow physics took me my surprise. Five hours of exams is a lot of stuff to remember...
Uni is back, bringing to a close the boredom (but in a nice way) of the holidays. Today I had the first four of five different kinds of lectures this semester and so far it's been... interesting.
I was late for the first lecture despite leaving home early because for public transport delays which was less than ideal. After a break I had my first French Culture lecture which was also easy. Unfortunately the next lecture (Quantum Physics) wasn't so nice. We were greeted with an assignment which is due in a few weeks and told that 'we weren't expected to ever feel comfortable with this material' since it is so counter-intuitive. Straight after that was a French Grammar lecture which at least told me that my French subject will probably be manageable this semester. Tomorrow I have my first Mechanics of Materials lecture which I hope isn't too bad, but judging by the usual workload for engineering subjects is going to take a lot of time and effort.
So, I have no idea how I'm going to do this semester since it seems like it's going to be crazier than last semester and I am completely out of study mode since then. I guess I'll take it one week at a time, because that's probably how I'm going to be assessed.
'Why me?' That's a thought that's been going through my head quite often in these past few weeks. I'm not even 20 and I take more pills than my father (who's in his late 60's). I think I even take more pills than my diabetic uncle. I almost feel like my life is over when really it's just beginning.
They say that there are five stages of grief when someone dies. Well, no one I know has died and yet I seem to alternate between all of them. I'm still partly in denial of this my-brain-is-really-sensitive-to-changes thing. I can't seem to go to sleep at a reasonable hour. I feel sad whenever I do and strangely victorious when I stay up late even though it makes me feel horrible. But at least I take all my pills now. Some days I seem to feel angry all the time, which is frustrating because there is nothing to direct my anger to. Apparently all this 'why me' stuff counts as bargaining, and sometimes I'm just sad, and I wonder if I'm depressed but it doesn't last long enough to count so I figure it's kinda normal.
But surprisingly, a lot of the time I'm fine. I'm just trying to live my life the best I can. And I have no idea how I do it. I suppose I have to because I don't have a choice. I really resent that right now.
Why the hell did this have to happen to me? Why does it have to be all the time? Can't I just have a break? For a day, even an hour?
I don't want any of this. I don't want to have to go to neurologist appointments where I have to make decisions that could potentially impact the rest of my life. And I am so terrified that one day some medicine I take will wreak my liver, or my stomach, and that I'll be in even more trouble. I'm scared that my brain will learn that pain is normal and I'll just keep getting worse and worse. So I have to take the drugs to try and control it. But there's always the question, what if I never get better? How the hell am I going to do this for another fifty or more years? With so much uncertainty it's not wonder that I don't want to make any defined goals for the future.
The annoying thing is that I have no idea if this is normal or not. No one told me to expect this emotional side effect from being in pain all the time. Not one doctor has ever thought to tell me about it or to even ask how I feel psychologically. Between that, and being told that my only problem is stress with an implied 'go away' something is seriously wrong with the medical system. Something is wrong with the way doctors are taught, because some of them still think it's appropriate to put their ego ahead of a patient's welfare.
I could keep ranting for ages and ages about this and that, but ironically I have just about ran out of energy and can't think straight anymore. This never used to happen...*sound of annoyance*. So, end of rant, sorry about the randomness of the stuff if you read this, but everything is just too much at the moment (probably doesn't help that it's holidays and I have so much time to think), and I just have to vent somewhere.
Hi Uni, I either love or hate you... or both... anyway, I think I'll stick around you for a bit more than I originally planned...
It's been an interesting day. In between going to the beach and celebrating my dad's birthday it's been rather eventful. But all that aside, today was the day I got the email saying I've been accepted into the French Diploma at my university.
I'd been waiting for confirmation one way or another since just before Christmas last year when my managing faculty approved and sent my application to the next stage. And now that I know I've gotten it for sure, and even though I made up my mind about it months ago, it's still a little intimidating.
The Diploma adds another year to my degree. I'll be at uni for 6 years just doing undergraduate stuff. It's a bit weird to think that I'll still be studying when quite a few friends will have jobs in the 'real world'. It also means I'll spend the same amount of time doing my undergraduate degrees and diploma that I did in high school. High school seemed like a very long time, and I suppose it was a huge chunk of my life, and I can't help wondering if this will be the same.
I'm not sure if I can deal with five more years like last year. It was so wonderfully fascinating and yet so utterly draining at the same time. I think I'm addicted to learning; even when I am completely drained and should probably be resting I can't help looking into my textbook and learning one more thing. I'm not sure if it's a good thing or a bad thing that I love my subjects so much that I'd literally study myself to exhaustion but that's what happened some days. I'd be really tired but the alternative is doing nothing on the bus home so I start reading my textbook and get fascinated by some and have the need to know everything about it. Learning a language might even be good for me. It's mostly rote learning so more relaxing for the brain that the other stuff I do.
I'm not sure how I feel about finally knowing that I'm doing French next semester, but I've decided to try it and hopefully it all works out!