Liv
“Always trust yourself, you know your body better than anyone else, you know when something isn’t right.”
Hi my name is Liv, I’m 23 and I’m from the UK. I have a few chronic health conditions, Gastroparesis, POTS, Nutcracker Syndrome and Visceral Neuropathy are my main issues. Because of these I decided to make some social media accounts to see if I could find anyone else going through the same thing as me, this led me to becoming a content creator on Instagram and TikTok (@Medically.Liv). On my socials I like to spread awareness for both Physical and Mental Health; I love doing this, especially when I can help give others a voice and advocate for themselves!! My goal is to help create change in the way those with long term/ongoing health conditions are treated. Chronic illnesses aside, I really enjoy crocheting. I make cute plushies and I’ve found it so therapeutic as well as it giving me something to focus on, in fact I’ve even started ‘TheNutcrackerCrochet’ shop on Etsy UK this year where I sell my plushies which I’m so proud of!! I share pics of these on my Instagram too. A few of my other interests are Dance (particularly Ballet which I did the majority of my life, up until my conditions deteriorated), going out for walks with my Dog, a good TV series and playing Pokémon.
I have had Chronic abdominal pain for as long as I can remember, it was first noticed by my parents when I was only 3 years old. I often went back and forth to the doctors growing up as the pain never got any better, but I was often dismissed being told “She will grow out of it, kids get tummy aches - she’s too young to be in that much pain” - so my symptoms were always undiagnosed. Around the age of 17 my pain got to an unbearable point and a new symptom of vomiting started after eating. Sometimes it could be hours after I’d eaten but it was always undigested - and it gradually got worse over months to the point where I couldn’t keep anything at all down. When I initially went back to the Doctors I was dismissed again, I feel I was treated with stereotypes and stigmas that go along with being a young person. I was told time and time again that it was all in my head, that it was ‘just’ anxiety - I even had to spend a full day being assessed at a mental health unit just for them to confirm it wasn’t ‘just anxiety’ or disordered thinking at all. After this I was finally referred to a hospital and by this point my weight had dropped so a NJ feeding tube was needed. When I went in for my feeding tube I also had a Gastric Emptying Study which then showed that I had Gastroparesis. That’s when the care started to change, but unfortunately there are such limited treatment options when it comes to Gastroparesis and just a lack of knowledge in general, so I’ve never really had an effective treatment for it. This year (5 years after my initial Gastroparesis diagnosis) we found out that I have a rare condition called ‘Visceral Neuropathy’ and it’s believed this is the cause of my Gastro issues - so it really has been a long process to find out what is actually wrong. At the present moment I am currently TPN dependent due to my Gastroparesis, Dysmotility and Visceral Neuropathy and have been for nearly 5 years now, I also have PEGJ tube as well. All these tubes manage my nutritional needs as I still cannot eat or drink anything orally.
When I was first told I needed a tube I struggled a lot mentally coming to terms with it. I remember thinking my life was over because I had a feeding tube whereas actually it gave me the nutrition to keep my life going. Once I actually had the tube placed I hid away for a while making sure to avoid people I knew, but over time my views have changed and I no longer let the fear of other people's judgements make me hide away. Starting TPN was a bit different, I was in a situation where I’d had my NJ tube for almost a year so artificial feeding wasn’t as unknown as before I was tube fed. I was desperate for nutrition and hydration so something had to be done. I think initially, TPN wise, the fear of having a central line was what was the most scary thing for me - especially as lines & TPN come with so many dangerous risks (alot of which I was never even made aware of before I started) and the fear of those never goes away. TPN keeps me going so, as much as I find it difficult & wish I wasn’t on it, I’m grateful that it allows me to stay nourished. It’s so important to know that it’s not alway a quick and easy process coming to terms with these things, it’s okay to take time and be upset, but time often does help.
I definitely have a difficult relationship with medical supplies for sure, they are often a reminder to me that I am ill which is never nice - I think with being on TPN as well it requires so much medical supplies and storage that for a brief period, my bedroom felt like a hospital. However medical equipment is a necessity for me so I tried to find replacements for things, like dripstand (Such as the FreeArm), cute storage boxes, something that will safely do the job but doesn’t feel as ‘medical’, things like pumps I’ll put stickers on & this has helped me compromise with everything. As for my illnesses, time has helped with somewhat coming to terms with things. Initially I was really naive, I thought I’d be given a medication which would fix everything and I’d be back to eating in no time, which obviously didn’t/doesn’t happen. Now I have much more of an understanding of my conditions and I’m much more confident when it comes to being open and talking about them. Know that it can be a long process, feeling towards stuff like this probably won’t change overnight, but time brings knowledge and with that comes change in how you feel about things.
For any Newbie Tubies I would 100% recommend Tubie Pads and Tubie Tape it helps to bring a bit of style/personalization instead of the tubes being so medical!! Tubie Pads also help to keep the gunk that comes with PEG/PEGJ Tubes off your clothes - on that note, tube feeding can get very messy so prepare for that, extra bed sheets are always useful. Another good tube tip - if it gets blocked with feed then always use a small syringe (around 5/10ml) and it should unblock it. Finally it’s okay if things are difficult at first, over time you’ll find what works best for you.
If I could, I would tell younger Liv to definitely always trust yourself, you know your body better than anyone else, you know when something isn’t right - a lot of people will dismiss you and try to tell you what you are/aren’t feeling but only you know what your body feels like. You have to advocate for yourself, it’s not easy but it’s your life at the end of the day so you have to speak up for what you think is best. Also, be patient with yourself, things take time but trust that you will get to where you need to be in your own time, don’t compare your life journey to others - keep taking your own path!!
Before the FreeArm Muscle I was stuck with the only dripstand available from my homecare company. It was a small sized dripstand that would require a lot of surface for it to stand on, it was really inflexible and not suitable for travelling with. The company only offered this and had no variety of options.
My favourite place to use my FreeArm Muscle has to be my bedroom, I have it clamped onto my windowsill and it’s right above my bed as my feeds are overnight. I love the fact that it is pink because it goes with my bedroom, which means it doesn’t stick out like normal medical equipment does. I also love the fact that it is so versatile, I can use it in so many different places, so I’m not as restricted, I can clamp it wherever. Also it is physically flexible (yet still strong!!) as well so I can easily fold it away and put it in a bag if I’m traveling - which I couldn’t do with my old equipment. You can really tell that the FreeArm was made with the tube fed community in mind, whether you are bolus fed or pump fed it will do what you need it to. (Plus Ollie the Octopus is soooo cute!)