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.
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 :)
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.
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
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...
Today's prompt is 'How does humor help you cope?'
In my opinion humour is the best coping tool you could possibly have. If you can laugh at a situation that is the best possible perspective you can view it in. Also, taking notice of the entertaining things in life can be really quite fun.
I’ve found that for a year or two now I automatically interpreted things and situations (provided they aren’t something serious) in the most humorous way possible. Sometimes I actually crave comedies. Laughter releases endorphins which are natural pain killers, and helps relax the body. I can feel that this is true, because some days I’d laugh for whatever reason and realise for the first time that I’m extremely tense and actually in a lot of pain. Then usually what would happen is that I’d want to keep laughing for quite a while, longer than appropriate if I’m with people, so I guess my body really knows what’s good for it! Laughter may not be the absolute best medicine but it’s pretty damn close.
Some websites/pages that I find funny:
- Damn You Auto Correct (though I should warn that it does have swearing on it)
- Post about subtitles on Harry Potter video (need to be familiar with movie to understand it)
I think I'll gradually add to the list when I find websites worthy enough to be added.
Prompt 25 is 'Lincoln: Who's your favorite historical figure who lived with Migraine or another Headache Disorder?'
I don’t have a favourite historical figure as much as I just like the idea of people taking their experience with migraine and using it to help inspire the creation of something that people will look at and enjoy for a long time. Two well known people who did this are Lewis Carroll and Vincent Van Gogh.
Lewis Carroll wrote Alice in Wonderland. There is a part in the book that describes Alice becoming suddenly large then suddenly small. This is thought to be inspired by a certain type of migraine aura, Todd’s syndrome, which is also called Alice in Wonderland Syndrome.
Vincent Van Gogh is thought to most likely have had migraine and that the auras caused by his migraines may have inspired some of his painting.
Their work is well known and as popular as ever. I suppose it’s why I’m mentioning them in particular, but there are many more out there. I found a list of visuals artists, writers and musicians online which were quite interesting. I had no idea there were so many people out there.
Prompt 15 is 'Harry Potter: Write & name a spell for getting rid of a Migraine/Headache attack.'
Harry Potter is awesome :D I've read all the books multiple times, seen all the movies, multiple times, and got a beta account on Pottermore. Just today my dad was watching a show and a character said 'The Ministry' so I thought 'Ministry of Magic?'.
So given this Harry Potter background a spell for migraine didn't really seem right to me. A little bit like taking a pain killer, a temporary fix. If you want it to go away properly, you need a potion. So here's the Cephalea Auferet potion:
- 3 small moonstones
- essence of dittany
- Ginger root
- 3 medium sized peppermint leaves
- a handful of lavender petals
1) Grind the moonstones into powder and place into cauldron.
2) Add 5 drops of dittany and 3 of honeywater.
3) Lightly heat potion until it turns a light pink.
4) Slowly add finely chopped ginger root until potion turns deep pink.
5) Grind peppermint leaves and lavender petals together with a mortar and pestle and add to potion.
6) Leave potion to sit overnight. It should be a deep purple colour in the morning.
This potion would fix everything for a single migraine attack and make it all better. If it was real... As if I needed another reason to want to go to Hogwarts...
Prompt 12 is 'The Box: You are the experiment: What situation in your Migraine/Headache Disorders treatment has made you feel most like a
guinea pig or lab rat?'
I have always hated trial and error. In primary school maths we’d have these puzzles where we’d have to try out different numbers until we get the right combination and I always found them so boring and pointless. I mean, that’s hardly a practical way to get the answer, right?
So now it’s a weird twist of fate that I seem to be doing the exact same thing, except now with medicines. At least numbers were pretty harmless; it’s a pity the same can’t be said for drugs. Medicines for migraine are tricky in that no one can say, ‘Here, this will definitely work,’ so the only way to move forward is to try some medicines out that have worked for other people and see what happens from there. It’s like I’m playing trial and error with my body, and I hated trial and error enough just on principle when it was a no risk thing with numbers.
So my answer to this prompt is simple: ALL OF IT.
Everything has been, ‘try this and when you come back tell me if it worked’. And then it hasn’t worked so I get told to try something else and come back later. It’s really quite frustrating. The fact that the risks of trying the medicines, even if they’re small, exist, make it even worse. But as long as there is a chance of an improvement I have to try it out even if I don't like it.