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Hi everybody! I'm Joey Paul and I'm an indie author. And today
I'm gonna be talking real with you all. I did one of these a few weeks ago or maybe
it was last month and I thought that I would answer the question I get asked the most,
which is: what's wrong with you? I know that I've covered this in questions from readers.
I've covered this in the Life Of Joey videos, but I thought to put an end to getting that
question completely, I would just tell you all what's wrong with me. I have several chronic
conditions and I will go through them each in turn. I have Type One Brittle Asthma, which
is the reason for the oxygen. It was also reason for the pump bag which I no longer use because
I'm on a new drug. I talk about the new drug in my Life Of Joey videos. I talked about
the process of waiting for it to be approved, and then waiting for the call to get started
on it. And I have now been on it almost a year and it's done wonders for me. Unfortunately
it hasn't gotten rid of my need for supplemental oxygen, but it has also cut down on asthma
attacks, it has also cut down on needing to use nebulisers and my inhaler and all of that
stuff. I have had brittle asthma for the majority of my life. I was born with asthma, it became
brittle when I was seven and so basically most of my life has been going in and out
of hospital, varying degrees of attacks and infections and all of that stuff. So that's
the first one, that's the big one. It's the one that most people see I guess because they
see the oxygen and they see that there's a reason for it. It's been something I've dealt
with throughout my whole life and I'm okay with where I am. It's also one of the reasons
why I use a wheelchair because I don't have enough lung function to walk places. But there's
other reasons for that as well. Which I'll cover in the next condition which is M.E,
otherwise known as Chronic Fatigue Syndrome or Myalgic Encephalitis. It basically is an
umbrella of symptoms and there's not really much known about it. It's one of those diseases
or conditions that people hear and think: Oh I don't know much about that. So, M.E.
is not just being tired. I've had M.E since I was nineteen, probably earlier than that,
but that's when the symptoms started to manifest to the point where I could no longer hold
down a job or get out of bed. M.E for me manifests as chest pains, as body pains, as overwhelming
fatigue. It also manifests as weakness in my legs and joints. It also manifests as a
general overwhelming feeling of being drained for the majority of the time. I sleep a lot
but it doesn't always feel like a refreshing sleep. And it's been something that I've learned
to live with and deal with. I wasn't always in a wheelchair because of the M.E and asthma,
I was mostly mobile until my mid-20s, at which point I started to need more support and I
had crutches for a while. I had a walker for a while. I had a wheelchair and a walker and
now I mostly in the wheelchair all the time. The third condition is Fibromyalgia which
is again another one of those conditions that people hear about and they're never really
that sure if it's real or not. And I can assure you that it is very real. I live in constant
pain. I have trigger points on my body that if you touch them, they would cause me extreme
pain, when one an average person that wouldn't happen. I also have problems with muscle weakness,
nausea, brain fog, all of that that goes together with the condition. I'm on strong pain killers
because my daily pain level is usually, probably at about a six on a normal scale and at worse
it's about a nine. I go through flares, both my, all my conditions have the ability to
flare up and make my life difficult. The Fibro is another reason for the wheelchair because
walking is actually painful to me. On top of that it's added, when worked together with
the M.E and the brittle asthma, it's made almost impossible for me to walk or exercise,
or do pretty much anything other than sitting in my chair and being. Those are the three
big conditions. As in those are the three big visible conditions, that you can see as
such. The asthma more than most people because of the oxygen and the wheelchair is there
and people make assumptions about whether I'm in a wheelchair for other reasons or because
of the asthma, or even because of my weight, which shocker isn't actually a factor. I have
a few other minor conditions. I have sleep apnea which means I use a CPAP at night. And
that's done wonders for me, and it also helps my asthma so it's kinda like a side effect
that's a good one. I have also got depression and anxiety, both of which have controlled
my life for a number of years. And both of which are heavily medicated. I have dealt
with depression for the majority of my life. When I became disabled it became obvious that
I needed some help with medication-wise. I also see a therapist and I can not advocate
enough for getting treated and getting to the point where you are feeling better in
yourself. I take a myriad of pills every week, and they all do different things. But the
idea is to get me as healthy as I can be. I'm never gonna be completely healthy and
that's just a fact of life. But I do manage to do the things that I do because my conditions
are as well controlled as they can be. Now the brittle asthma is one that most people
haven't heard of, it's sometimes called esoonphillic asthma, which is the type I have. And a lot
of new treatments are coming into play, like the Mepolizumab, the Mepo that I take every
four weeks and because of that it's sort of like shone a light on the fact that severe
asthma is not that common but also has a big impact on the people it effects. The side
effects for Mepo for me are worth it. I feel crap for three days. I feel nauseous, I have
a horrible headache, and I generally just don't feel well. But the payoff is enough
that I'm not off the pump, that I was on for fifteen years. Because that was, at the time,
the new drug to control the condition I had. And even then it didn't really control it
that well. I was still in and out of hospital, in and out of flares and exacerbations and
stuff like that. So basically that's it, that's what's wrong with me. I know some people are
gonna be curious no matter what. I know that I could sit here and explain it three hundred
times and some people are still gonna wanna know more. The reason I share the health side,
in the Life Of Joey videos is because part of my process, it's part of what I've managed
to do with writing obviously has an effect on what I haven't managed to do because of
my health. It's a process that I choose to do because I wanted to be more transparent
with you guys. It's also a process I do because I wanted to shine a light on the fact that
yes, I'm disabled. I'm a chronically ill author and I'm doing pretty good. It's not to be
an inspiration to people. I don't want pity. I don't want people to sit there and go: wow
she did all that despite... no, that's just not how it goes. It's about being real. It's
about being honest. It's about being open and up front, but yet there are some parts
of my conditions that I won't share. And there are some symptoms that I won't share and there
are some days when I won't be on insta stories or Youtube or anything. And that's completely
okay. My health is my health. I choose to share what I do, but the continual questions
about why I take this and what's that for, and what's the oxygen for are kinda getting
to the point where you just kinda feel like: it's not really any of your business. And
I know the majority of people asking mean no harm by it. They're just generally curious.
And that's okay, but constantly asking and getting it from all sides of what's wrong
with you and all the rest of it drains you. And so yeah that's why I wanted to make this
video. Now if you have any questions that aren't literally what I just explained, you
are more than welcome to approach me, but I reserve the right to not answer some if
they're too personal. So that's all I've got time for today. If you wanna get in touch
with me you can comment or subscribe. I post new videos on Thursday. And sometimes I post
them on Sundays too. Or you can find me on Facebook, on Goodreads, on Tumblr, on Twitter.
My books are available everywhere. And don't forget to check out Darker 2018 where I will
be signing books this October. All the links for which are listed below. Thanks for watching!
Bye!