00:00I haven't eaten anything in over seven years.
00:03My condition means I'll never eat again.
00:06Unfortunately, there is no cure.
00:08Eating through my heart keeps me alive.
00:10The biggest question I always get is,
00:13do you miss food?
00:14And I'm like, yes, of course anybody would miss food.
00:18A big thing I want to try and do
00:20is create a change in the way
00:21that people with chronic illnesses are treated.
00:24I'm currently on 45,000 followers,
00:28which is surreal to me.
00:31Hi, sunshines.
00:32My name is Liv.
00:34And in case you don't know,
00:35I've got a paralysed stomach.
00:39I'm just going to help you
00:40just disconnect your feed for you.
00:42Gastroparesis is a paralysis of the stomach.
00:46I'm unable to eat or drink
00:48because my stomach is paralysed.
00:50That means it doesn't digest any food.
00:53When I eat, the food will just sit in my stomach
00:56and it's got nowhere to go.
00:58So it ends up coming back up out of my mouth.
01:01So this is the feed.
01:03My main tube feed goes directly into my heart.
01:06And the reason for that
01:08is to provide access to my bloodstream.
01:10So because none of my digestive system works properly,
01:14we have to feed through the bloodstream
01:16to completely bypass it.
01:18And then what we have to do
01:19is give this a really good clean,
01:21stop any bugs or anything getting up into that line.
01:25Because the line goes directly into the bloodstream,
01:28if any dirt or bacteria was to get down there,
01:31it would be going straight to my heart
01:33and then to all my major organs.
01:35And that can very quickly turn into sepsis
01:38that can be fatal.
01:39It's quite scary as well
01:41when it is such a sterile procedure.
01:44Her life is in my hands.
01:45So I struggled with that a little bit.
01:48It was quite frightening.
01:49I have to do this every single day
01:51because I get all my nutrition through my bloodstream.
01:55So if I went 24 hours without this feed,
01:58it would be like going without any food or drink.
02:01So that's my main source of nutrition
02:03and that is my main source of hydration.
02:05Now going into her body.
02:08And then that can go into a backpack.
02:11It's very difficult not being able to eat or drink.
02:14It's such a big part of life
02:16and you don't really realise that
02:18until it's taken away from you.
02:20Like so much of life does revolve around food.
02:23It's an experience, it's pleasurable
02:26and it's really hard having that taken away from you.
02:30Unfortunately, there is no cure for gastroparesis
02:34and there's very limited treatment options as well.
02:37Doctors don't know if I'll ever be able to eat or drink again.
02:41It's one of those things that they just don't know.
02:48When Olivia was a baby, she had no problems eating
02:52and it was when she got to about three
02:54that I noticed that there was something not quite right.
02:57I kept taking her to the doctors
02:59and they kept saying she needs to eat more fruit
03:02or she needs to eat more vegetables.
03:04She needs to just relax
03:06and constantly I was just hitting brick walls
03:10and they'd do a few tests and then they'd say,
03:12no, she's fine.
03:14I used to get very upset
03:16when I could hear my family downstairs eating.
03:18I'd get very annoyed at just being around other people eating.
03:22It was very difficult to come to terms with.
03:26When she got really poorly at 16, 17,
03:30they were just not listening at all.
03:33It was, she'll grow out of it.
03:35I was in college at that point.
03:37I was running on next to no nutrition during the day.
03:40I became very like socially withdrawn.
03:44I barely had any friends.
03:46I actually had to drop out at the last five months of college
03:49and teach myself from home.
03:51I didn't actually get an official diagnosis until I was 18.
03:56The day we finally got a diagnosis,
03:58like I remember that so well.
04:00Me too.
04:01We literally just came out of the hospital room, didn't we?
04:04Yeah, we were just sobbing.
04:05We just hugged each other at the biggest cry.
04:09My mental health has been massively affected
04:12by all the medical stuff that I've been through.
04:15I have a lot of anxiety.
04:18I struggled with depression
04:20and unfortunately I suffer quite badly with OCD
04:24and that has really been caused by medical trauma and medical PTSD.
04:29I've required like a lot of support off my family,
04:33particularly my mum.
04:35You have been the biggest support.
04:37Like I don't think I could have got through any of this without you.
04:40Like you have been the one who advocated for me
04:44when I couldn't speak up for myself.
04:46You were the one who was always in my corner,
04:49like fighting the battle with me.
04:51I just, yeah, I couldn't have done it without you.
04:54It means the world to me.
04:56Aww, you're just my little baby.
05:00I've probably been actively sharing my medical journey online
05:04for a good three years now.
05:06I originally joined the community
05:07just to find other people going through the same thing that I was.
05:12But as time went on, I decided to like create a TikTok
05:17and start more on raising awareness for my conditions
05:20and educating people about them.
05:23A lot of people don't even know that tube feeding even exists.
05:27I'm currently on 45,000 followers, which is surreal to me.
05:34Hi, sunshines.
05:35My name is Liv and in case you don't know,
05:38I've got a paralysed stomach
05:39and I'm fed through a tube that goes into my heart.
05:42And this person wants to know
05:44when the last time I ate or drank something orally was.
05:47A lot of people ask like, how does it work?
05:51How does feeding through the heart work?
05:53A lot of people get very confused by that.
05:56I am met with more positivity than negativity.
05:59I get a lot of DMs saying that people have just felt less alone
06:03seeing my content,
06:05thanking me for raising awareness
06:07for stuff that's not usually spoken about.
06:10A few negative comments I get is like,
06:12you don't look sick, you don't look disabled.
06:16And some even harsher ones saying like,
06:18this is a waste of taxpayers' money,
06:20which is really hurtful to hear.
06:22Sick doesn't have a look,
06:24but a lot of people assume that it does.
06:26So a lot of the times I feel like I'm constantly having
06:29to like justify that I am sick.
06:32I get so many more positive comments than negative comments.
06:36So I tend to focus on those.
06:39A big thing I want to try and do is create a change
06:42in the way that people with chronic illnesses are treated,
06:45especially within the healthcare system.
06:48And I think awareness and education
06:49really does help contribute towards that.
06:52I noticed a lot when I'm in public,
06:54people will often stare at my tubes if they're on show.
06:57I've even had like small children point at me
07:01and the parents don't tell them not to.
07:03I find that walking the dog really helps my mental health.
07:07I just find it so peaceful and just gives me mental clarity.
07:12I think we've come very far in our confidence,
07:15in our journey, yeah.
07:16I don't like when people say they feel sorry for me.
07:19I feel like I am so much more than just my illness.
07:23That is just one part of my life.
07:25I can still do stuff I enjoy.
07:27I've still got personality.
07:28I'm still me.
07:30There's more to life than just my illness.
07:32I really want to carry on like with my TikTok.
07:35I want to keep raising awareness
07:37and I want to keep doing it until I help create a change.
07:40Like that's something I'm adamant on doing.
07:44I like to remain hopeful about the future.
07:46I like to live in hope that I may get better one day.
07:49You don't know what's coming, do you?
07:51Yeah, so I'm really proud of myself
07:54for getting to where I am now.
07:56I always think back to Liv at the beginning of her journey
07:59who felt so lost and so alone.
08:02She had no voice and couldn't speak up for herself
08:05and I always think if she could see me now,
08:07she just wouldn't be able to believe it.
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