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 :)
'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.
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.
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.