My Experience Navigating Illness | Chronic Illness Tag | PART 1

My Experience Navigating Illness | Chronic Illness Tag | PART 1

Hello friends! Please excuse all of the electronics cords
running beside me, just pretend that is my aesthetic. It’s sort of my aesthetic. I am
very disorganised and nothing was charged when I went to film this morning. That’s my laptop, so if you see me looking
down, it’s because I have impaired cognitive function from brain fog and my light is not
on my face. It’s probably going to fall on my face, you might even be able to see it
in frame, who cares? We are running this show! So this is my first video back for 2016, haha
oooopps a daisy. I checked our YouTube channel this morning
and it turns that we have just hit 96 subscribers which is the coolest thing ever I am so jazzed,
like this has made my otherwise painful and dull and boring and depressing morning just
literally so the coolest thing. Thank you guys so, so much for following us and staying
in touch and just being our loyal friends while we were on a bit of a hiatus. I’ve been
wanting to upload videos since about February, but my health and body has disagreed with
me violently. I think a lot of you will understand what I am saying by this. I have been wanting
to do a lot of things that my body has decided is not necessarily something I am going to
be able to do. But this morning my pain has been pretty well
controlled by my pain medication so I decided to get up and write a video and set up my
lights which are very high tech, and they are making perspiration drip into my eye balls,
and charge up my camera and see how far we go. So far, I mean, I put on make up for this
video, so, we got, we got pretty far. I wanted to make a video, this isn’t a really,
this is going to be a bit more upbeat than usual because I wanted to make a video that
basically just introduced me to all of our new friends and talks about my illnesses and
talks about kind of like my little corner of the world and sort of opens up the line
of communication for you guys to talk about you and talk about your illnesses and maybe
your friends with illnesses or your experiences and just talk about your little corner of
the world too. So if you want to do that, please do that! I would love for you to do
that. I’m going to leave like a rough outline of the questions that I have answered in the
doobliedoo and you can either reply in the comments, you can go to our Facebook page,
you can hit us up on Twitter or you can send us an inbox on Facebook – we do reply, we
reply slowly because we no spoons but we do reply. I promise. I found these questions and some of these
questions I found online and some are just questions people ask me all the time so I
thought it was good to kind of like get them all out in one video and I guess it’s kind
of a video that we can all relate to and share with people too, to answer the questions.
See – brain fog! Um, and just a side note – in case you didn’t
know, closed captions are available on all of our videos like you just have to turn them
on in the clicky clicky. So our first question is who are you, what
do you have, and how has it affected you? So really that’s three questions, and I’ve
already failed. So I’m Kate, I’m 22. I live in South Australia in a semi rural town and
I have — well actually, I have something to add before that. I am studying veterinary
nursing which might be important if I say that now to points I am making later on down
the track. So I am studying vet nursing via correspondence learning online and doing placement
in vet clinics so if you have a vet clinic and you want an awesome vet nurse for free
who has insurance, and has been trained, hit me up! So I have: endometriosis; fibromyalgia; asthma;
interstitial cystitis; hypothyroidism; anxiety disorder; panic disorder; major depressive
disorder; hyperflexible joints and ideopathic probably linked to fibromyalgia oedema. That
last one’s not really a chronic illness, but it hurts. So my illnesses affect my life a great deal.
I know. Who’d have thunk! It’s kind of getting worse this year as you
might have picked up by the big absence on social media and YouTube and in life in general
if you know me. Sometimes I’m okay, I will have little to no pain. Rarely – OH, I’ve
got the hiccups! – I will rarely have no pain I have pain that I just don’t mention because
it’s not worth it. And then sometimes, like this week, I will just be stuck in bed for
a few weeks straight and there’s nothing that I can really do about it, I just have to rest.
And when I say stuck in bed, it’s not like oh I don’t feel well enough to get up, it’s
like, literally cannot function goodnight. So with fibromyalgia I don’t get a lot of
restorative sleep and I think it is the same for a lot of pain disorders, so we sleep but
we don’t go into the phase of sleep where our body and muscles and whatever tissues
– I’m not a doctor – restore themselves so any damage that’s done during the day and
wear and tear and stuff doesn’t always repair itself like it does in other people. So I
can sometimes sleep for I mean I do get the lucky night where I do get a lot of restorative
sleep and I might sleep for two hours and wake up feeling awesome but I can also sleep
for twenty four hours and feel like I haven’t gone to bed at all. So aside from fatigue
and pain, which I’m sure we will cover in so many videos and I’m sure we have already
covered in so many videos I also have a lot of trouble with friends, family and strangers
who smoke near me or in places that I go. My asthma is severely reactive to cigarette
smoke to the point that it can cause me to just pass out from lack of oxygen to the brain
or whatever, and I have done this in the past and it’s not fun. It doesn’t take a lot of
cigarette smoke to trigger my asthma, literally just a tiny bit in the breeze it’s the same
for perfume, or incense, or perfume sprays, or like um you know those smelly sprays that
you spray in your house in you spray one of those in my face I’ll have an asthma attack. When it comes to friends and family smoking
around me I struggled for a long long long long time that, that their addiction to smoking
was often more important to them than my ability to breathe and I struggled with feelings of
rejection and isolation and feeling like my family and friends didn’t want me or care
about me and that went on for probably like a year or two. And it wasn’t just at these
events like I would feel that way pretty much whenever I thought about it I would just spend
days in bed crying because I felt so rejected by these people, it is a building block and
has made me into a stronger person now but I had a long way to go through the pain and
through feeling like I really had I went from having this big circle of people I had that
supported me down to like two people or three people who hadn’t rejected me so much. So during my diagnosis I was attending university
and I had only been going for a few months and basically it was so painful that I had
to stop going and I started failing out of my course and eventually dropped out because
it was just too painful for me to go which then really sucked, and upset me, but now
it is a good thing because it left me for vet nursing, which in my heart was what I
was supposed to be doing this whole time. Last year I lost my job for a similar reason,
but mostly I lost my job because I was severely bullied at work due to my illnesses so this
is basically discrimination. The bullying lead me to have a really severe mental breakdown
or nervous breakdown whatever you want to call it, and I was no longer able to work
there. So the second question is what happened when
you were diagnosed or how were you diagnosed? So with endometriosis, I was diagnosed about
ten years after my symptoms first started. Which is pretty typical for women who have
endometriosis. To me, looking back, those symptoms were really obvious. And it makes
me really angry that my primary care doctors as a young teenager a young woman were, well
basically, didn’t investigate this pain that I was reporting further, and didn’t find that
I had endometriosis. Instead of that, they just told me that pain was normal – now we
all have heard that line. But it infuriates me that I probably wouldn’t be where I am
today had they done their jobs. And I don’t think that people who take the easy way out
and tell me that pain is normal instead of investigating the root of the pain should
be trusted to be the primary care physicians of children or adults at all. I think that
they should lose their licenses. Okay well we had a weird problem where I was
talking to the camera, and it wasn’t switched on. Let’s continue. So. When I was 19, I developed
a niggling pain on the right lower side of my abdomen which was kind of in my appendix
area but not really. And it was kind of like a little stabbing pain that was there constantly
and it would get worse when I moved and better when Iay flat on the floor and didn’t breathe
properly. And I ignored it for a very long time, I was just starting uni, and it was
quite easy to just pretend that life was okay and I didn’t need to go to a doctor even though
I did need to go to a doctor and it wasn’t okay and after about two months of ignoring
this pain one day I woke up and it had erupted into this intolerable very very persistent
pelvic pain that I just couldn’t live with and it would never go away. I had absolutely no money and I could not
afford to go see a specialist because they are about $300 when you don’t have money or
private health care cover in this country, not something I could afford. So I went to
see the city’s kind of like free clinic I guess is what it would be called in America,
it’s like a gynaecologist and STD clinic in the city and because they specialise in STDs
they immediately assumed that’s what I had. Even though I had no markers for it. So I
had an STD panel which tests for all known STDs and it tests if you have had them in
the past or whether you have them now, and it tests your white blood cell count, and
inflammation factors. So I had pretty much no inflammation factors, and normal white
blood cells, and no history of any STD and no present STDs. So they immediately said
to me that I had a type of chlamydia that nobody’s ever had detected before, even though
I have never had any STDs or any markers of any STDs or no symptoms of STDs, and that
it had turned into pelvic inflammatory disease, which is when it travels into the uterus and
inflames the uterus even though I had no inflammatory markers. And they would treat it with a course
of antibiotics and I’d be done and dusted. Which was not true, and it never went away,
and it never will go away. And basically I put up with this pain and
it caused me to drop out of uni because I wasn’t able to attend my courses or my lectures
or my tutorials or do any of my assignments. So a few months on from seeing the gynaecologist
from going to the free clinic that thought I had a new strain of chlamydia that had never
been seen before, I went, I had been seen by many a GP who had no idea what was going
on, I went into see another GP who had a special interest in women’s health I guess. I sort
of walked in with this yeah she’s not going to find anything because nobody else has I
must be an alien or harbouring a new type of disease or I don’t know pain is normal
for me now. And she kind of had this look in her eye where I don’t know she kind of
already assumed she knew what was wrong with me which to me at the time was not a good
thing because to me at the time that kind of meant oh great she thinks I am a drug seeker,
which obviously I wasn’t. And she took my history and did an exam and she said look
everything they told you is wrong with you is absolute crap. I think you have endometriosis.
Which was the first time I had ever heard the word endometriosis. Which is ridiculous
because one in ten women have it like come on one in ten women have it and it was the
first doctor in like thirty female doctors to even and some male ones of course to even
like know what it was. You know your body best and if your GP is
not up to the task find a doctor who is actually willing to fight for you because they are
out there a lot of doctors will just pawn you off on the easiest answer possible and
if that does’t feel right to you find someone who’s got half a brain in their heads. Well,
that’s not fair, they probably have half a brain, find someone who cares, and fight for
your self because you are your best advocate. Hi guys!
So obviously, I am filming this after I finished filming the official video which ran for 25
minutes, so I decided to split it into two parts, and I’ll release the second part a
little bit later. So this is the end to part one, which part two is way more interesting,
and I just wanted to say don’t forget to click like and go find us on social media, and share
your story with us, please please please because we wanna be your friend, and thank you and
don’t forget to subscribe, and find us on twitter as well, and leave your story in the
comments below, and there is probably a bunch of things I forgot to say but just thank you
and I hope you have tonnes of spoons this week and just have an awesome week. Okay,

2 thoughts on “My Experience Navigating Illness | Chronic Illness Tag | PART 1

  1. I'm 19, and I also have multiple chronic health/body issues that all effect the way I look and feel, and plus they all have NO cures or effective treatments. I feel extremely limited and depressed everyday. I've never wanted to feel so normal and worry about the normal things a typical person would be worrying about! THANK YOU SO MUCH for making this video!

Leave a Reply

Your email address will not be published. Required fields are marked *