Disability Discourse: Medication & side-effects.


Hey guys! Today’s video is another Disability Discourse,
and today I want to talk about medication side effects. So medication can be a real blessing to people
with chronic illnesses and disabilities. Sometimes it seems like medical science is
an actual miracle – sometimes! However, a lot of medications do come with
unwanted side effects, so today I’m going to talk about my experience with side effects,
and then I’m going to talk about some of the home remedies/little tips and tricks that
I’ve found help with some of the side effects that I’ve experienced. Since I think I’m going to ramble a little
bit in this first section, I’m going to give you guys some time stamps down here where
you can skip me rambling about my experiences and anecdotes and just go straight to the
home remedies and tips that I have for dealing with other side effects. The other thing is, of course I’ve only experienced
a certain number of side effects, thankfully i haven’t had every side effect in the book. If you have experienced other side effects,
or if you have other tips for dealing with the side effects I talk about even, please
let people know in the comments. It would be great to share your knowledge
and experience with other people, because sometimes side effects can be really debilitating. So, let’s hop right into it. So first I just want to really quickly tell
you two little stories about side effects that I’ve had from two different medications,
just to kind of show you the variance in what people can experience and the…what the paper
says, versus what might actually happen. So the first one is Enbrel. Enbrel is my main medication for dealing with
rheumatoid arthritis and it has been for a really long time now. Now Enbrel has like…I don’t even know how
long the list of potential side effects in my Enbrel box is, but it’s huge, it’s like
this pamphlet that unfolds and it gets like…it’s gigantic anyway, you get the idea. There are like over a hundred side effects
listed on there, and some of them are pretty serious. So I read that and I was kind of like “oh
my god, what is my doctor putting me on? This is insane. Why would I take this?”. As it turns out I’ve been on Enbrel for seven
years now, and I have had one of the side effects, which is that sometimes I get a headache
from it. And apart from that I’ve had absolutely nothing. So that’s a case where I read the paper and
completely panicked and nothing happened for me at all. Of course everyone is different, so I think
like obviously on the paper they just put everything that could possibly happen to you,
so bear that in mind and like don’t freak out if your medication has a list of side
effects as long as your body. And my second story is about a steroid called
Prednisone, if you have taken that before you will have heard that name and probably
cringed just as much as I did right then. So Prednisone is used for pain control and
inflammation control often in rheumatoid arthritis patients and when I got put on Prednisone,
when I was…14? 15? I didn’t get told about any side effects. My doctor just put me on it, my specialist
put me on it. I didn’t get a piece of paper like I did with
the Enbrel, so I was like “okay, it’s just a painkiller, it’s just a regular thing. It’s not anything too serious.” I mean Enbrel is a disease modifier, which
should theoretically have more serious ongoing side effects than a painkiller. However, what wasn’t explained to me is that
Prednisone is a devil drug for a lot of people. I didn’t get told any side effects and so
I started putting on weight and I was like “okay, this is just…you know, this happens
sometimes, you put on weight it’s fine”, and then my skin started to get really bad. I’ve never had bad skin in my life and it
looked terrible. Of course when I was 15, this was a really
big deal to me. And then, so those were both dealable with
and I also didn’t associate them with Prednisone, and then I started to feel like I was going
insane. My mood swings started coming out of nowhere. I’d feel super angry for no reason, and then
just really crushingly, almost suicidally sad for no reason as well, and I’ve never
been like that, I’m still not like that, I’m quite a level person, I guess. I’d never had mood swings like this. I really thought that because I was just becoming
an adult, like I was around the age where you go from being a chid to being an adult,
I felt like I was just becoming who I was going to be and I was like “this person is
horrible, I hate this person, I want this person to not exist”. Um, so after a while I decided to go and read
a forum about medication and side effects, and it turns out that like 80% of people who
are on Prednisone for a long period of time end up having these psychological and physical
side effects that are really serious. So that’s just a case of… you have Enbrel,
which is a disease modifier and a fairly serious immune suppressant. I should get a lot more side effects that
I do from that and that works really well for me. And I was warned about that one and nothing
ever came of that. And then you have Prednisone, which I wasn’t
warned about and I didn’t even get a piece of paper with, it’s just a “painkiller”, and
that was a nightmare. So I guess what I’m trying to say here is
that everyone reacts differently to every medication, and just because a medication
comes with a piece of paper that is really scary sounding, doesn’t mean it’ll be like
that for you. Like I said before, they have to put all of
that stuff on there just in case anyone gets it, even if it’s just like a .002% of the
population who was tested on it gets that side effect, they have to put it in there. And then with other things, don’t assume that
just because you didn’t get told about side effects that they don’t exist, because I definitely
didn’t associate Prednisone with all of the terrible side effects that I was getting for
a long time, because I trusted that I would be told if there were such serious side effects. So number one: don’t freak out if there are
a lot of potential side effects, and number two: if you start feeling different and things
are changing that aren’t normal for you, definitely look into whether those are side effects of
the medications that you’re on because you won’t always get told and you won’t even always
get that lovely piece of paper with all the terrifying words on it. So now that my two rambly anecdotes are out
of the way, I just wanted to talk really briefly about some ways that I think we should be
approaching side effects when starting new medications. So please take this with a grain of salt – this
is what’s worked for me, something completely different might work for you, you just never
know. But these are the things that I try and do
when starting a new medication. Number one is educate yourself. This means reading that super scary piece
of paper that comes with most medications. Now read it, take it in, do not panic! Like I said before, they have to put every
single potential side effect, even if it barely ever occurs, they have to put it on there. Most of the time they do this in alphabetical
order, so it’s kind of the least useful order they could have done it in. They don’t do it in order of occurrence percentage
or anything useful like that. So read it, take it in, don’t panic. For example, cardiac arrest might be on there. Cardiac arrest starts with a C, it’s gonna
be high up in the alphabetical list, but chances are there is a very low percentage likelihood
of that actually happening. So the next part of educating yourself is
going to find people who have actually been on this medication and can tell you their
experience of it. This is a much more useful way of educating
yourself, because this should give you a better idea of the chance of each side effect rather
than just all the potential side effects. Now there are a couple of websites that are
really great for this, I tend to use drugs.com, which is a fantastic website name, can I just
say! I use drugs.com a lot for the side effects
that people ave experienced and the percentage of people who experienced them on each medication. There are a couple of others, I will put some
links in the description below to those, because I think that they are one of the best resources
and if you feel like it please do add to that pool of knowledge, because the more people
who add to the database, obviously the more accurate the information is going to be for
people in the future looking for that information. So that is educating yourself. You can also ask your specialist when they
initially put you on a new medication, just say “hey, what side effects should I be looking
out for, what can I expect?”. I kind of don’t do this, I guess I just don’t
really have that kind of relationship with my specialist, I just go home and research. But if you do have that kind of relationship
or you think that that’s something that could help you, then definitely do that. They should be telling you anyway, but I find
a lot of the time I just got put on medications and not told anything about them. It was kind of assumed that I would figure
it out for myself, which I eventually did, but it would have been nice if someone told
me! Okay, so that’s educating yourself. The next thing is to know yourself. So this is something that I would recommend
everyone do, but especially chronically ill and disabled people: get to know your body,
get to know your mind, and if anything changes you will be the first to know. So this is especially difficult when it comes
to psychological and mental side effects because obviously it’s changing the way that you think
and the way that you react to things so it’s really hard to know if that’s you or if that’s
the medication. It can get really tough there, but the best
thing that you can do is just to be aware of how you normally are, be aware of how you
normally react to things, be aware of what your illness is normally like. And so when something changes, even if that’s
not a side effect that you’ve ever seen anywhere for any of the medications that you’re on,
go and talk to your doctor, go and talk to your specialist about it. You know you best, and if something is off
you’re gonna be the person who figured it out first. And the last thing that I want to say, so
educate yourself, know yourself, and finally: you are allowed to not be on medication. You are allowed to stop taking a medication. I think there’s a really big stigma around
this where it looks like you don’t want treatment or you don’t want your illness to be controlled
or whatever. Absolutely not the case, do not feel that
way…or, I mean, you’ll probably feel that anyway because there’s this huge stigma, like
I just said, but try not to feel that way! If a medication has side effects that you
think outweigh the benefits, you absolutely do not have to take that medication. I stopped taking Prednisone cold turkey, which
could have potentially killed me, but I felt like that was my best option at the time because
I was very scared – I hated the side effects and I felt like they were dangerous. So if you feel that way, if you feel that
the risk or the cost isn’t lining up with the benefits that you get, you can tell your
specialist or your doctor that you do not want to take this medication and that you
won’t be taking it any more. Obviously listen to their advice on how to
come off it, it can be really dangerous to stop certain medications cold turkey, don’t
do what I did, and follow their advice on how to come off it. But it is completely within your rights and
there is absolutely nothing wrong with choosing to not take a medication because of the side
effects. You’re allowed to do that. It doesn’t say anything about your desire
for treatment or your desire to get better…quotation marks “get better”. It doesn’t say anything about you as a person,
it just says that this medication is not right for you. So yeah, educate yourself, know yourself,
and do not be afraid to say that you want to stop taking a medication if it’s not right
for you. Finally I’m just going to go through some
of the side effects that I’ve experienced and some ways that I’ve dealt with them using
home remedies or just other non-medication things. A quick disclaimer before we get into this
part of the video: Of course if these things are really serious and affecting your day
to day life home remedies aren’t really going to cut it unfortunately. Definitely go and talk to your doctor or talk
to your specialist about other ways you can be dealing with these things. But these are just some ways that kind of
helped to mitigate the side effects just enough for me to deal with them. Okay, so let’s get into the side effects! The first side effect we’re going to talk
about is insomnia. Now this can be such a tough one to deal with
because lack of sleep affects like every other area of your life negatively. So for insomnia I do recommend getting medication
if you can to help you sleep, and if you’re like me and you don’t get along very well
with the knockout type sleeping pills like Zopiclone, you can try something like a night
time antihistamine, which are really good for getting to sleep. Just check with your doctor, ask what they
can offer you and give some of them a go. If you really can’t do medication for sleeping
I also got along quite well with hops tea, which is a herbal tea for sleeping and also
Valerian pills. Again, I don’t know if this is placebo effect
or if they actually do anything, but if it’s a placebo effect then it’s one that I really
like, so I’ll take it! Number two is another super common one and
that is nausea. I used to get super nauseous on Methotrexate,
which is a medication that I took in a higher dosage before Enbrel. I still take it, but it’s only a little tiny
amount. And I used to just be throwing up for a really
long time, it was very unpleasant. So the two things that I found really helped
with this are spearmint things, especially like spearmint mints or gum and spearmint
tea is good as well. And then ginger, especially ginger tea. The way I made ginger tea is I just grate
up a piece of actual ginger into the bottom of a teacup and put in boiling water and a
little bit of honey, and that really really helps for me as well. Also great for period cramps if you get those! Number three is mood swings and irritability. Now unfortunately there’s really not terribly
much that you can do about this if you’re experiencing it. However what I will say helped me was being
able to step back and say “this isn’t me, this isn’t who I am, this is a side effect
from a medication that I’m taking and while I’m feeling these things and these emotions
are real, the cause of them is not really the cause of them”. Me tripping over something didn’t just make
me burst into tears, it was the medication that I’m on. So being able to take that step back and kind
of reframe it as a medication side effect rather than just as you being slightly insane
really helped me. Number four is forgetfulness or brain fog. I think a lot of us experience this as a side
effect of pain as well, but it can also come from certain medications and the absolute
best way that I’ve found to combat this is lists. I make lists for everything. On my phone I have a notes app, you can also
just use a regular notebook if writing is something that you can do, but I have a notes
app and I have a note set up for things that I need to do that day, things that I need
to do that week, and then I have a standard grocery list where I just add to that whenever
I think of things. So I have it set up so that usually I have
my phone on me and so when I remember something or think of something I just immediately put
it on the list, because I know the next second it could be gone. But yeah, lists saved me so many times and
it’s just nice to not have to have that moment of “oh my god, I’ve forgotten again, I’m so
useless”. You just have it right there and you can add
to it whenever you remember things. Number five is kind of obscure, but something
that I definitely struggled with and still do struggle with sometimes, and that is nosebleeds. So I’m on medication that thins my blood and
sometimes a blood vessel in my nose will just break and it’s like a murder scene. I cannot stop the bleeding. It’s just everywhere. So when this first started happening I had
no idea what to do about it, it felt untreatable because a tissue in my nose would get soaked
through with blood in like half a second. It turns out you can just go to hospital and
get the blood vessel cauterised, which means that they will burn it shut, and that for
me usually works for a couple of years and then another one bursts and I just have to
go back and get it done again. But it’s a fairly quick and simple fix. So definitely talk to your specialist if you’re
getting nosebleeds, they can set you up for cauterisation. Number six is dizziness and fainting. Now this is something that I still experience
and I have never really found an adequate home remedy for it. However the one thing that I will say is just
stop standing up super fast. If you’re gonna stand up make sure that you
do it in a slow and controlled way. That’s the only thing that I’ve been able
to come up with that helps me at all. If anyone else experiences this and has any
ideas on what I can do to try and mitigate it, please let me know, I would love to try
it out. Number seven is stomach ulcers. A lot of medications can be really tough on
your stomach, especially anti-inflammatory medications, and these can cause super painful
ulcers in your stomach and it’s not a fun time. So the way to combat this is not to wait until
you get a stomach ulcer, but to try and prevent them from happening. And how to do that is to take your medication
with a big glass or bottle of water and hopefully with something to eat as well, but if you
can’t eat then at least a substantial drink like milk or soy milk or whatever and then
a big glass of water as well will really help to line your stomach and help to protect it
from getting really painful, horrible ulcers. Number eight, and sticking to the ulcer theme
(yay, love it!) is mouth ulcers. This is another fairly common side effect
of some medications, and the best thing for it is baby teething gel. So Bonjela is like the well known brand but
I find that is pretty expensive. There’s a budget version of that in New Zealand
called MediJel which I use which is just as good as Bonjela so just find some teething
gel and apply it as needed. Number ten and the final side effect that
I’m going to talk about is thin skin. Now this a surprisingly common side effect
that I had no idea existed until I got put on Methotrexate. Thin skin basically means exactly what it
sounds like – your skin gets thinner and so you’re more susceptible to injuries and also
really importantly to sunburn and the skin damage that goes along with sunburn. There’s not really much you can do about…like,
if you were gonna accidentally cut yourself then you’re gonna do it, but just remember
to treat even small cuts as though they’re not serious but make sure that you bandage
it up and clean it properly and things because chances are you just don’t have as many layers
of skin to go through before you get to important stuff, so make sure that you’re taking good
care of any injuries that you get. The really important part is sun care, so
I wear sunscreen every single day and I have for a really long time – about ten years. Sun hats are really great as well, I carry
sunscreen with me. Just get in the habit of using sun protection
because you will burn like nobody’s business and burning can lead to A) skin damage, but
B) more importantly certain types of skin cancer, so just make sure that you’re protecting
your poor like delicate skin! Okay, so that is it for my little spiel about
medication side effects. I really hope that it’s been helpful to you. As I mentioned at the start, if you have any
more experience of the side effects that i’ve mentioned and have other tips for people,
please leave them in the comments below. If you have other side effects completely
that you have tips and home remedies for, please again leave them in the comments below. It’s really helpful to share experiences and
to share knowledge like that, so I’m always really appreciative when people do that. So yeah, that is it. I hope that you have a really great day and
I will catch you next time. Peace!