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OLIVIA was sick for years until she was finally diagnosed with Gastroparesis aged 18. She explained to truly, "It's a paralysis of the stomach. I'm unable to eat or drink because my stomach is paralysed, that means it doesn't digest any food." To survive, Olivia relies on tube feeds to get her essential nutrients. "My main tube feed goes directly into my heart and the reason for that is to provide access to my bloodstream. Because none of my digestive system works properly, we have to feed through the bloodstream to completely bypass it." Keen to raise awareness of her condition, Olivia started making TikToks to educate others and currently has 45,000 followers, which she says is "surreal to me". Reflecting on her journey, Olivia said, "I don't like it when people say they feel sorry for me. I'm so much more than just my illness, that is just one part of my life."
Follow Olivia:
TikTok and Instagram - @medically.liv
YouTube - @medically_liv
Videographer: Martin McQuade
Producers: Yasmin Walker, Kathryn Lewsey, Courtney Buabeng
Editor: Garry Sykes
OLIVIA was sick for years until she was finally diagnosed with Gastroparesis aged 18. She explained to truly, "It's a paralysis of the stomach. I'm unable to eat or drink because my stomach is paralysed, that means it doesn't digest any food." To survive, Olivia relies on tube feeds to get her essential nutrients. "My main tube feed goes directly into my heart and the reason for that is to provide access to my bloodstream. Because none of my digestive system works properly, we have to feed through the bloodstream to completely bypass it." Keen to raise awareness of her condition, Olivia started making TikToks to educate others and currently has 45,000 followers, which she says is "surreal to me". Reflecting on her journey, Olivia said, "I don't like it when people say they feel sorry for me. I'm so much more than just my illness, that is just one part of my life."
Follow Olivia:
TikTok and Instagram - @medically.liv
YouTube - @medically_liv
Videographer: Martin McQuade
Producers: Yasmin Walker, Kathryn Lewsey, Courtney Buabeng
Editor: Garry Sykes
Category
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FunTranscript
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.