By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /

The weird thing is, the better I feel
with my chronic illnesses and all my symptoms, the more depressed I get. And
actually I never really felt depression before I started improving. So that’s
weird right it’s really kind of intuitive I should be feeling happier
and more excited the better my chronic illnesses are the better that I feel but
is actually the opposite wait okay now from the beginning. Health’s
doing a lot better today so I’m down here by the beach eczema is doing great
just how to do pics in a shot yesterday and I mean as was doing great I’m
basically just eating beef and potatoes so my overall inflammation from food
allergies has come down a lot but the weird thing is the better I feel with my
chronic illnesses and all my symptoms the more depressed I get so that’s weird right it’s really kind
of intuitive I should be feeling happier and more excited the better my chronic
illnesses are the better that I feel but it’s actually the opposite yeah if you
wanted to talk about this for a long time that the better my help gets the
more depressed I get and actually I never really felt depression before I
started improving so I was born with three severe chronic illnesses and all
my life it just went downhill from day I was born it just got worse and worse and
you know things didn’t really turn around till I was about 27 when I found
my research doctors in Utah even though I’ve been working with them for about
ten years 11 years it’s only the last two years that Dupixent has really
made big leaps of progress with my illnesses yeah my skin has been much
better before that but it was only because of using immunosuppressants that
kind of mask it and I can’t even stop the immunosuppressants for even half a
day without my illnesses flaring up a lot and I still eat and even with the
pixon I need the immunosuppressant cyclosporine to keep everything calm and
deal with the food allergies that Dupixent doesn’t help with the reason
I’m depressed is because feeling well it’s not normal for me and this might be
a little bit hard for you guys to comprehend if you develop chronic
illnesses later in life or even if you were born with it maybe you had like a
little laughs in between or you slowly got better and then maybe sometimes in a
year look adult like those illnesses came back again for those of us that are
born with chronic illnesses and have experienced this our whole ours this is
our life and normal life whatever that means is really really hard for me to
deal with it’s sort of like you guys who have
develop chronic illnesses later in life like that whole reality shift realizing
that your life is not gonna be the same again that’s what I’m dealing with as I
slowly get better with you know immunosuppressants and Dupixent and all
these other treatments and I’m trying but whatever you think of as a normal
life for me is an abnormal life it’s my goal it’s just complete disorienting and
I learned about this when I heard an older gentleman from my church talk
about him becoming a paraplegic after getting in a surfing accident and the
way he described his experience of you know going into depression having to
relearn how to deal with every single thing in his life that’s what’s going on
with me as I heal and improve and get better everything around me is suddenly
different I you know and you know learn to be I need to learn to go out during
the day I even need to learn to go out of the house which super scary even
though I’m not reacting as much like I don’t need my mask all the time but I’m
constantly looking at every single person’s hand to see if they’re holding
a cigarette and when it’s somebody passed behind me I am paying attention
to you the odors on their body whether if it’s a cigarette smell or if they
have pets or if it’s some kind of a perfume or even lotion I’m just super
aware of everything around me and not experiencing normal life as you guys
would it’s just a very weird experience in perspective that I would have thought
that getting better would help my mood and lift my spirits and actually it’s
been a complete opposite and it’s just a really weird experience
where my whole life I was looking forward to getting better at least
improving enough that I could have a normal life whatever that means
and as I’m slowly getting tiny tiny taste of it the more depressed I get one
second ago you couldn’t wait to get off this plane
no no I feel freedom I guess I’m just being overwhelmed by more
themes that I have to deal with while I’m still dealing with my chronic
illnesses and all of the changes in little steps of recovery and I don’t
even think that’s the right word for me because recovery assumes that you know
because recovery assumes that you’ve been well at some point in your life and
you have that baseline or normalcy that you’re trying to get back to you well
I’ve never had that so every step of this improvement process I’m just gonna
call it improvement every part of this improvement process is complete
life-changing in a disorienting and confusing way for me because every
little change of being able to go out or being able to be under the Sun without
my skin just completely disintegrating being able to travel all of those things
is really disorienting and each and each step that I get slightly better it’s
like all of that changes again like the kind of people I can be around and not
react or the time of day that I’m I’m up a lot of times I’m totally nocturnal so
seeing some light is really disorienting for me and one of the reasons why it’s
psychologically challenging to improve is then you have something to lose I’ve
never had that before because of just how extreme all three of my chronic
illnesses are you know people are like oh you should try to avoid this and that
or you should try this diet or that diet I can’t because I’m literally allergic
to all foods on the scale that’s higher than what Labs can test for it’s
basically off the charts and so avoiding one food or the other or avoiding going
outside versus staying indoors with a mask on
it doesn’t help all that much because there’s still millions of other things
in the world that I reacted but now that I’m slowly getting better and have a lot
of those reactions subside a bit and I can enjoy coming outside without being
bombarded by a million things affecting me then it does get scary duck you do
have something to do and I can’t understand more of why you guys are just
developing your chronic illness why a lot of you guys are freaking out and
being really scared of losing everything because there is a lot of amazing things
in life that you can lose and it’s just that I’ve never had that before so I
didn’t really comprehend what’s out there like I still don’t comprehend what
most of the foods are you guys feel bad for me that I can’t have a birthday cake
or just can’t have chocolate or anything well I don’t know what that tastes like
so does it really matter like there are foods that you’ve never heard of so you
don’t feel bad about missing out on one because you never had them before and
actually for me like I’ve tasted tiny bits of cake or something you know just
trying it and those are the most horrifying experiences ever because I
just started choking and meat we went into anaphylactic shock and my body just
swelled up and there’s inflammation even inside my brain and my skin just
completely peeled off and exploded basically and boiled off within a couple
minutes the only experience I have with those foods that you guys you know are
afraid to miss out on I don’t really care because the only experience I have
with those are negative are bad they’re just like poison to me like would you
feel bad about missing out on poison not really to me that’s what cake is to me
that’s what milk or chocolate is I can even smell those things and react to
them so another source of the depression has
been because I thought as I get better I would be normal I just had this fantasy
of what normal is and being able to do normal people things but now that I get
to do them I don’t really feel like it was all hyped up to me because all my
chronic illnesses had already taught me life lessons and basically wired my
brain to think differently and experience things differently than
everybody else because I have lived with chronic illness my whole life my whole
perspective is just different like I said I don’t have that normal experience
that you guys have that you want to go back to so all of this normal stuff is
foreign to me and I’m not really sure I like it all that much you know I I’m
used to doing a lot of stuff on my own I love being around people as you can tell
that I also love doing a lot of stuff on my own going out and partying and
hanging out with a lot of people that still gives me a lot of anxiety I’m
constantly worried about what kind of perfume and things they have their body
and I’m still super sensitive to sound and even light and just being around a
lot of people in crowds even though I’m used to that I wouldn’t call that
anxiety because it’s all I really know I guess a lot of you guys have asked if I
feel anxious and I don’t think I do but it is an extra stressor that I have I
just prefer to do stuff on my own and when I first started getting a little
bit better and be able to go out and hang out with people I thought that
would make me happy but it didn’t it was just very weird for me
just had to discover what I truly wanted to do regardless of anybody else
regardless of whatever illness or symptoms or limitations I had and it was
an interesting journey but it was just depressing in that I had this fantasy
about what getting well would mean and it didn’t turn out to be like that so
that was another disorienting experience that I had to go through so when I
realized that the normal life wasn’t for me and I had to just have to let go of
that fantasy or ideal it’s like the whole world crashed down on me and that
also happens every single time that have to deal with a lot of physical changes
of improving but it’s still the world shifting in more ways than my brain can
handle at one point and just takes a while to figure out what the difference
between the actual reality versus my supposed imagined ideal and tried to
find a balance of what’s actually true for me and what’s the life that I want
to live another problem that you have when you start to improve is your
purpose in life isn’t obvious when you’re constantly fighting for your life
every single moment is really clear that’s all you need to be doing like you
know I did a video about keeping yourself busy and keeping your mind
occupied because that’s what I do like I constantly have to focus on my breathing
and so I don’t worry about anxiety and stuff even though like I said I guess
technically when I go out I have more anxiety of more things to deal with
but I’m so focused on dealing with those things and just breathing in and out
especially with my asthma that’s never really stopped from my whole life I’m
constantly having the asthma attack so when that happens I need to work really
hard to control my breathing my lungs my chest muscles
so that I and you know and you know do that to be able to breathe and I don’t
really have the mental capacity to do anything else but when you’re a healthy
when you have had enough sleep when you don’t have one crisis after another to
fight and when you’re not constantly thinking about okay
I need to be prepared so if I have an emergency this moment do I have all my
meds how am I gonna get to a hospital you know what’s the best route to take
that’s what I’m usually thinking when I’m driving a car I’m not you know just
daydreaming about whatever so the purpose of life is obvious and I guess
that’s one of the reasons why i like watching war movies and military movies
it’s not like i’m a war junkie or like dead it’s because people know situations
are something that I relate to you because I’m constantly fighting for my
life when you’re when you’re doing that survival is the only thing you don’t
care about what you’d like what you don’t like what somebody else said about
you none of that stuff matters you’re literally just fighting for your life
and doing the things that make that possible and planning ahead so that you
don’t get yourself into trouble and constantly thinking about what the
threats and dangers are and I guess that’s where a lot of the PTSD comes
from from people who have have been in war and came back when they were in war
they say it’s very obvious that you’re just trying to stay alive and you’re
just trying to keep your buddies alive and when you come back to you know what
kind of cereal should I get or reality TV stars and worrying about that or
having real rage like we’re but when you’ve been fighting for your life every
single second of every moment of every day
you know road rage and serial in reality TV just does not matter and coming back
to the normal society where that’s what most people are talking about that’s
what most you are worried about that’s what gives people stress and it’s just
impossible to relate to that kind of your reality in with one final thought
the final reason why I’m feeling more depressed the better I get is just
realizing how much a normal life real life that I still need to learn and it’s
like fighting for I’m 36 now so I’m fighting for 36 years of climbing out of
hell and battling through every single day every single moment of my life and
now that I’m sort of seeing the light at the top of the tunnel or the cave or
wherever I’m climbing out of and I’m slowly starting to see enough of the
outside world and when I peek out through this hole to
the outside world to normal life I’m seeing that I’m at the bottom of the
valley at the bottom of Mount Everest and there’s just this whole other thing
that regular people have to deal with for battling through life and it’s I
have to climb over Mount Everest after having fought for every moment of my
life to just to get out of hell and I’m still not there yet if you guys are in
my situation of my severity you guys would think it’s the worst ever you see
how much improved and you think that I’m feeling better and relatively I am but
I’m coming for in place where like it said I’m probably the top 5 most severe
eczema and allergy people in the world when they first gave me a skin test and
it was just like a tiny scratch on my arm when I was 2 years old
my whole body swelled up and I was going into shock
and the doctor had to tie off my arms to prevent the reaction from getting to my
heart I’m literally like an unstable atomic bomb ready to go off
at any moment there’s all this stuff going on inside of me so I’ve heard a
lot of people complain about how bad they’re feeling and honestly like I
haven’t shared everything that I’ve gone through but like the worst case I’ve
heard from other people complaining to me is maybe 5% I’ll be Jenner’s say
that’s like 10% of the worst I’ve gone through but it’s probably like 5% of
most of you guys front even 1% of the severity of things I’ve gone through
especially because I have like I said multiple diseases it’s very different
when you have three severe deadly chronic illnesses versus just one and
when all three of those are off the charts the most severe that people have
ever seen it’s very different from just having you know like a really really
severe but not than extreme so you know I fought all through all that and now
looking at real life and thinking of all the things I still need to learn to live
on my own and even just get through today dealing with relationships and all
things like that it’s just it kind of blows the mind of I just don’t really
want to deal with that that makes me tired and depressed as well so there’s a
lot of things I’m going through on this improvement journey and I guess I’ll
share them along the way

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