#poorlygal

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

The poorly gal, and the poorly thumb! Please send my mammy all the light and love you can; she’s feeling really down today, and that was before she nearly cut her thumb off whilst cooking and had to go to A&E in her pjs to get her finger stitched back together! #poorlygal https://www.instagram.com/p/CPRdND8Nvc1/?utm_medium=tumblr

Every cloud ⛅️ has a silver lining. In this case, the cloud is that I have a UTI; E. coli to be specific. It makes a nice change, cause my usual UTI bug is Proteus Miribilus, which is notoriously difficult to treat. E. Coli is usually easier (I say usually, cause, like, I his is me we’re talking about 😂). Palliative care rang this afternoon to let me know and see how I’m doing (not good, is the answer tbh 😂👍🏻 a 5/10). I’ve started antibiotics (we keep the ones I’m most responsive to in stock in the house for situations like this one) and cranberry capsules, and we’ve changed my paracetamol and buscopan from PRN to regular for at least a few days. The silver lining? Well at least now we know the reason for why I’m feeling so poorly, and it’s something treatable! This is good; part of me was wondering if this was just my new normal. I’m hoping after a few days antibiotics I’ll be driving my family mad bouncing around and bossing them about 😂! I’ve found it really hard the last few days; I genuinely just feel crap. My brain fog is awful; I just about remember my own name atm tbh 🙈😂! I’m so tired; I’m sleeping 8-9 hours a night, then sleeping 50% of my day away. My neuropathy is really bad too, especially in my hands and arms... it makes doing anything way harder. I’m really struggling to walk. And my pain is pretty bad, especially with some awful bladder spasms. I’m so poorly and exhausted I can’t do any of the stuff I usually do... no yoga, no dance, no walk with the dogs... I can just about manage a shower, and I need a nap after that. But I’ve been making an effort to find joy in the stuff I can do; sunbathing, naps in my book nook, listening to music, watching telly, cwtches. There is still a lot of lovely stuff I can do! If you’ve been in touch with me the last few days and I haven’t responded, please be patient. My brain is currently full of cotton wool, and my body is made of jelly; I just don’t have the energy to Do The Things. I’m hoping in a few days I’ll be back on top form. I really appreciate y’all checking in and being so supportive. It means a lot ❤️ #mybladdersucksatbeingabladder #gotauti #thatpalliativecarelife #poorlygal #yayforantibiotics https://www.instagram.com/p/CDSKvkyjWrF/?igshid=1q3spsculg1lj

Poorly gal today 😢 had to cancel my virtual dance class and it’s gonna be a day in bed 🛌 When I struggle at the thought of getting through life, I focus on a day... when a day feels overwhelming, I focus on one hour at a time... and when that’s too much, I just try to make it through the next five minutes. #palliativecarewarrior #poorlygal https://www.instagram.com/p/CAchVS6D0O6/?igshid=18x4nikjsf38f

Poorly gal today. #poorlygal #palliativecarewarrior #kidneysinfectionssuck #mykidneysandiarenotfriends https://www.instagram.com/p/B-m79BvjxKw/?igshid=1xoul1v508rap

So just to let y’all know that we’ve discovered the reason I’m a poorly gal right now; say hello to kidney infection number 39 of the last 3 years! We had a bit of palaver, because normally LMC keep antibiotics in stock for me to start as soon as I’m unwell (I walk the fine line of trying desperately not to use antibiotics, but when I do need them, I need to start them immediately or I jump to sepsis very quickly), but they hadn’t been replaced from last months use (this brexit bullshit is hitting us hard with medication shortages already; something I’ve spoken about for the last year) so o has to speak to ring The Bat Phone, aka the Oncall GP. Thankfully they were, as usual, excellent. The dr told me I was an expert patient, and that she wishes half her patients were so on the ball! She genuinely got really excited when I told her my mum was a manager for the actual Expert Patients Program 😂! Anyways, I’m on high dose antibiotics, and 3 doses in I’m already starting to improve 🙌🏻! Phew 😅! Hoping tomorrow will be a better day all round... but mostly, I’m hoping I’ll get some sleep tonight! I had a 2 hour nap at lunch time, but I’ve been utilising pure spite and willpower to stay awake til a reasonable time, so that I actually have a chance at a good nights sleep 😴 fingers crossed 🤞🏻! #igotakidneyinfection #kidneyinfectionssuckass #utissuck #poorlygal #antibioticsareamazing (at Cardiff) https://www.instagram.com/p/Bv95zXCnfIY/?utm_source=ig_tumblr_share&igshid=n1uwsk522l46

Night shift number 3; tonight my on site, on call night nurse is mummy, with her glamorous assistant, Rufus 👩🏻‍⚕️👩‍👧🐶! #poorlygal #palliativecarewarrior #palliativecarefamily #nightnurse #nightshift #sleepoverwithmummy #andrufus #heshelpinglookafterme (at Llansamlet) https://www.instagram.com/p/Buzzam4np-z/?utm_source=ig_tumblr_share&igshid=47no0snakm29

Absolutely love the fact that my amazing boyfriend deliberately wore this hoodie to the hospital because he knew I’d want to steal it 😊❤️ don’t worry, he had a jacket to wear home (I checked)! I love wearing his hoodies, especially when I’m poorly. They smell like him and they’re super soft and comfy... it’s like having a little piece of him here at the hospital with me ❤️ Love you Blue 💙 #istolemyboyfriendshoodie #heletsmestealhishoodies #ilovemyboyfriendsomuch❤️ #inhospital #poorlygal #palliativecarewarrior #ahoodieisnearlyahug (at Llandough Hospital) https://www.instagram.com/p/BuCbwKlnhQ6/?utm_source=ig_tumblr_share&igshid=5o0eeudjxzir