I don’t think being sick stopped me from being who I was supposed to be… I think it helped me find her far sooner 💛💛💛 #thisiswhoimsupposedtobe #palliativecarewarrior #watchingthesunrise☀️ https://www.instagram.com/p/CWrPMGONfDZ/?utm_medium=tumblr

I’m sorry, I don’t have time for drama, or anger, or being sad 24/7… I’m busy finding my joy with the people I love in the places I love. #palliativecarewarrior https://www.instagram.com/p/CWrON2TN44-/?utm_medium=tumblr

In exactly one week I’ll be 27 years old 🎂🥳 When I was a teenager I was desperate to live to 17; not 16, not 18, 17. All my loved ones and clinical people thought this was hilarious. It seemed like an attainable goal for 13 year old me, I think. And years later, my psychologist made me realise that it had been said so many times I wouldn’t see adulthood that until I actually reached it, 18 seemed scary, rather than exciting. I’m pretty sure if you’d asked me at 17 if I’d still be alive a decade later, I’d have said no. I think if you’d asked my clinical team, my family and my friends, they would’ve been too kind to say an outright no, but they’d be thinking it. It was so unlikely I’d get here. But I did. I’m still here, despite everything!! I could write pages and pages of all the battles I’ve faced; cardiac and respiratory arrests, multiple cases of sepsis, too many infections to count, severe mental health challenges brought on by all my trauma… and I could go on and bloody on. Instead, I choose to fluxes on the good stuff. I can’t thank the army of clinical and social care professionals who got me to this point enough; you have worked an actual miracle. And I cannot thank everyone in my life for making it such a joy filled thing that no matter how bad things got, you always helped me find the will to carry of fighting and to stay. So yeah… thanks for a fucking fantastic nearly 27 years! Let’s try for another decade, hey? #oneweektilmybirthday #survivor #hospicecarewarrior #palliativecarewarrior #iwouldntchangeathing❤️ https://www.instagram.com/p/CVvlqL4Nv8g/?utm_medium=tumblr

Today was a good day. It’s the type of day that makes me completely, utterly glad to be alive. The last few months have been hard. I had several really good, really well (by my standards 😂) months, only to come craving back down to reality and have a respiratory deterioration, a nasty chest infection, and an awful kidney infection. I’m now battling things like a post infection autoimmune flare, fatigue, pain and nausea. I get a lot more breathless and my heart has to work a bit harder. I’ve had days where I’ve been so exhausted by the simple act of living in this body that I’ve sat at the kitchen table and cried in frustration. Other days I just hid in bed or on the sofa, under several blankets. But today, even though I slept in so late my family had to check I was still alive (I wish I was joking 😂), I got myself up and went swimming. I had a pot of tea and a coffee. I helped mum buy a new storage unit. I saw my friend Hanna. And I got dressed up and went out for an incredible Chinese with some of my favourite people to celebrate a birthday. Yes, I had a seizure when I was out, yes I had pain, and yes I wet myself. But I had the best time laughing, catching up, and eating yummy food and drinking a very strong gin with people I adore. We do not need our days to hold big adventures and landmark moments for those days to be special. Every day I get is a wonder. But I’m especially grateful for the good days, that make all the bad ones worry enduring. #todaywasagoodday❤️ #palliativecarewarrior https://www.instagram.com/p/CVjMhY-N28u/?utm_medium=tumblr

🎶hello darkness my old friend, I’ve come to talk to you again🎶 Two weeks of antibiotics for a chest infection, two weeks off antibiotics… and now I’m back on them for another two weeks for a nasty UTI. My consultant always says to expect it to take at least a month to feel like the most well version of myself post infection. That means accepting that the next six weeks… won’t be my best. I had such a good 2021, with so few infections or issues (by my standards 😂). Sometimes when I’m living life as the most well version of myself, I forget just how crap being really unwell feels. But here’s the thing; I’ve lived so much of my life feeling like this. I spent two years with pretty much constant infections and I still had a good life. I forgot my own resilience and strength for a moment… now I’ve remembered. So even though I have awful pain, feel sick as a dog, I’m exhausted 24/7, my brain is mush, and my bladder is being a bitch… I’m still going to be trying my best to live my best life 💛 P.a. Yes, thank did one fact go to the beach on Saturday whilst literally peeing blood 😂👍🏻 there wasn’t anything to do until I got my urine sample results back, so I thought I might as well enjoy myself 😂 #palliativecarewarrior #hospice #mybladdersucksatbeingabladder #uti #hellodarknessmyoldfriend🎶 #iamresilient https://www.instagram.com/p/CUVwHJIt6d2/?utm_medium=tumblr

I’m still alive!! Poorly gal again today. Mum was on the phone with the GP and the hospice. I’ve been prescribed another week of antibiotics and nebulisers to use regularly for a few days to try and shift the gunk. I did get out of bed today though! But only because mum and dad said me and the bed both smelled and both needed a wash and a change 😂 Currently spending most of my time binge watching Chicago Med and putting all my effort into just breathing. Not gonna lie, last night was a rough one. I coughed so much I vomited into the sink and was literally screaming/sobbing with pain. Couldn’t catch my breath, couldn’t shift the gunk, couldn’t stop coughing. Horrible and scary. Feeling poorly and exhausted. And so eager to get back to how life was a week ago. I was complaining about being busy; now I’d give anything for the ability to be busy. Grateful for my parents and Emma and their unwavering and unconditional love; even when I smell 😂 Not much else to say. Just… keep fucking going 💛 #thatpalliativecarelife #palliativecarewarrior #hospice #chestinfectionssuckballs https://www.instagram.com/p/CTieVsoDveA/?utm_medium=tumblr

I spend a lot of time challenging old fashioned stereotypes about what palliative and hospice care looks like, and most of my time sharing the joys of my life. I love telling you all about the days I’m well enough to go running, or swimming in the sea, or our for coffee. But there are always days like to day, that remind me my health is so so fragile. A different, darker kind of adventure. I have a chest infection. I feel absolutely awful. We’re hopeful these antibiotics are working, because since starting them today I’ve begun coughing up some impressive green gunk. I know it’s gotta come up, and that it’s actually a good sign that both the antibiotics and my shit lungs are working, but I do not enjoy the process AT ALL. It’s really difficult for me to cough up muck because of the affects my condition has had on my body… so every episode where I cough and retch and struggle for breathe is a Herculean effort. I’m exhausted. I know I’m ill, because despite 2 days in bed I’m not bored at all. Just leave me here with my hot water bottles and my Netflix! How did I get this chest infection? Well I definitely have a virus (not Covid thank god, because frankly this little adventure has reiterated that even fully vaccinated Covid would probably kill me off) so it could be that just went straight to my chest. I could’ve aspirated something; water when swimming in the sea, or food or drink when a choking episode or respiratory spasm hit. But we don’t know. We’re going to give the antibiotics and my body until Monday to improve; the GP said that whilst they don’t expect me to be out running, they want at least a 30-40% improvement. In the meantime, my mum is carefully guarding the GP and hospice out of hours bat phone numbers. I think sometimes I can look and seem so well that I make people forget how fragile my health is; including myself. And then my body reminds me. Today has been rough for the whole house. Let’s hope tomorrow is a better day. Any and all good vibes are much appreciated ❤️ #palliativecarewarrior #hospice #chestinfectionssuckballs #poorlygal #sendgoodvibes https://www.instagram.com/p/CTVjspqNVvB/?utm_medium=tumblr

What is an invisible disability? My disability is often very visible; I need a mobility aid, or I have a seizure, and you can see I’m disabled. But since having to have all my tubes removed, I now often live in the invisible disabilities club. You can’t tell it by looking at this photo, but I was poorly yesterday. I had a few big seizures, I was struggling with my breathing, my heart was doing funny things, I had terrible brain fog, and I had the most agonising bone pain. I was an impressive shade of blue/grey for most of the day, between my pain and crap oxygen. But I still went out and enjoyed myself; not because I wasn’t ill, but because I’d feel crap wherever I was. So I might as well feel crap whilst enjoying myself! Remember; you cannot tell how poorly someone is just by looking at them. #invisibledisability #invisibledisabilitiesclub #palliativecarewarrior https://www.instagram.com/p/CTELgABNkCe/?utm_medium=tumblr