Muses of a Chronic Pain Survivor :)

My name is Rosie and I was diagnosed with Chronic Hereditary Pancreatitus when I was 4 years old. As a result, I also developed severe Chronic Pain and Chronic Fatigue Syndrome 5 years ago. Although the conditions are hard to live with, I refuse to let them define and own me. What freedom they have taken, I am slowly starting to win back. I hope this blog will help give some insight into life with these complicated illnesses :)

[spottydotty45]

You know you've reached your home ward when one nurse drops what they're doing to give you a hug, and another winks and gives you a high five. 🎯🚹🚺🏥 The others giving greetings like "hello trouble" and "I thought we had an agreement about these meetings? They've just got to stop". 💭⌚💡🙌 If I have to be anywhere in this hospital, this has got to be it. Next job handover and pain relief. 💉📏📉🔬 (at University College Hospital)

[spottydotty45]

Half asleep, and listening to Brittany Spears "Oops i did it again", I go to turn over hear a massive grinding crunching sound to find I'd badly subluxed my ankle. 🎧🎼🎹🎵 My more than colourful language drew the attention of my nurse, pillows and ice packs fetched, it's now elevated and pain meds had. 🌍❄💊💉 The lesson here? Never listen to Brittany Spears EVER again! 😂😂😂 (at The Flat of Rosie)

[spottydotty45]

Just had the fright of my life! I was part way through changing my dressings and needed to grab some more things out of my special kit. 💣💪🚺🚿 I opened the draw, reached in and a ginormous hairy legged spider shot out, over my hand, on to the sofa and off into the distance. 🐾🐞🐛🐢 The little bugger made me jump, so my box of dressing things I'd been holding in my hand went flying, spilling it's contents all over the floor and under the bed. 🌍✂✋♿ Something tells me I'm going to be finding bits of gauze, flip flow taps and curos caps for a while! 🆚🔮⏳⌚ (at The Flat of Rosie)

[spottydotty45]

You know your ME is relapsing, when your crowning achievement of the last four days has been managing to sit up in bed once and having a wash with help... 💀💣💤💪 #partygirl #wildchild #ill #ME #myalgicencephalomyelitis #relapse #spoonielife #chronicpainwarrior (at The Flat of Rosie)

[spottydotty45]

Ever since having my PEGJ replaced my site has been oozing what must be acid onto my skin. 💪👥👍 It burns like hell and has caused the skin to blister and then peel. Sometimes the blisters burst before they're ready, causing agonising pain. It literally feels like I've been set a light! 🔥💣💥 Really not sure what to do to protect my skin, which tends to be hypersensitive most of the time anywhere, counting out lots of creams and dressings. 😦💉💊 Any suggestions?! 🌍💎💼 (at The Flat of Rosie)

[spottydotty45]

Subluxed my wrist whilst sitting up... Ow!! 😷💣💪 (at The Flat of Rosie)

[spottydotty45]

Hypo of 3.5 on a Lipid night?! What the hell body!!?? 🙄💉🌍💦 (at The Flat of Rosie)

[spottydotty45]

Still in hypo, and still symptomatic! Belly is hurting like crazy and head is still pounding. Can't get sugars up. So sick of this!! 🍭🍡🍧💉 (at The Flat of Rosie)

[spottydotty45]

I turn my back for less than a minute and my bears seem to have colonised my pillows... 🐻🐼🐨 I can't take this lot anywhere! Resistance is futile. 💪🏻👊🏼👍🏼 (at The Flat of Rosie)

[spottydotty45]

Those horrible dermatitis blisters are back with a vengeance, and those that have burst have now turned into deep painful splits. 💉💊💉💊 Naturally the deepest ones are all centred on the tip of the finger, ow! 🖖🏻🖐🏻👆🏻👌🏻 So to combat both ailments, I have slathered the whole finger in Vaseline, wrapped in a tissue, with a plastic finger stall on top to make sure all the cream stays exactly where it's needed! ♿️🚺✅⚠️ (at The Flat of Rosie)

[spottydotty45]

Awful night + awful pain + awful headache = feeling just plain awful! 😩🌍💎📉💉 (at The Flat of Rosie)

[spottydotty45]

I'm really pleased with this new bio patch. When my dressing was changed last week, the site was gunky, red and raw and bled ever so slightly whenever the dressing was changed. 📆📰☎📱 One week later with the bio patch on, and the difference is incredible. 📈💾📉 It also acts almost like an umbrella, protecting the wound from the adhesive in the dressing itself. When it came to removing the dressing, instead of the usual bleeding and tearing, the site remained perfectly intact. YES!!! ☔🌀💧💦🌂 There's no redness or bleeding, and what's left of the gunk has stuck to the patch, rather than me. It truly is amazing what a difference such a small thing can make. 🌍⌚💉 (at The Flat of Rosie)

[spottydotty45]

Finally after three hours of blowing in a tube every half an hour, the Hydrogen Breath Test is finally over and done with. 💨💪🌍💡 Tomorrow I'll package up the breathaliser with the completed measurement sheet. Then it's just a case of sitting back and waiting for the results to come through. ✂📔📆 Simples! 🔠🆓 (at The Flat of Rosie)

[spottydotty45]

I don't know why, but I get the feeling that Petunia is all ready to jump head first into the land of nod. Maybe it's the combination of the mask and headphones?! 📱📽🎧😴💤 Whatever it is, I definitely feel inclined to join her. Mind: follow that unicorn!!! 🌍🌩🦄✈️ (at The Flat of Rosie)

[spottydotty45]

Finally my box of Bio Patches have arrived. They are little foam circles soaked in some kind of antiseptic or alcohol and when placed on top of Hickman wound sites they both aid healing and help to prevent infections. 💪😷💉🌍 Let's see if using these helps keep my infection rate down. I can't afford to keep loosing lines. Fingers crossed that I'm not allergic to it too! I'll just have to see how it goes. ☀✌💡 Has anyone else found them helpful? If so how long and what affect did it have?? Let me know how you got on please. 💎💍💼📆 (at The Flat of Rosie)

[spottydotty45]

I woke up to find my IV pump alarming, and my poor nurse on her hands and knees looking at the giving set in one hand, and the trouble shooting guide in the other. 😴📔💉⏰💣💤💪📺 With one blerry eyed glance at the pump, I told her it was an upstream occlusion. The poor thing had misread the guide and had spent the last half hour looking for one downstream! 👀👎📔📺 Bedside lamp on, I quickly found the problem: a busted filter, which had allowed a long stream of air bubbles to pass through it and into the line. 🌍☀💉💡💭 So glad the pump alarmed! But not so glad that I had to ditch my bag of fluids in the process. ⏰😒💧 (at The Flat of Rosie)

[spottydotty45]

Been waiting for nearly 2 hours for my Oxynorm. I've asked several different Health Care Assistants and a handful of nurses, each time getting the same response, "she's drawing it up as we speak". 😷💉💉💊💊 Well I'm no mathematical genius, but it doesn't take over 10 minutes to draw that stuff up, let alone a couple of hours! 🔢🔣🎓📈💡💭 At the couple of hours mark, I managed to capture one of the nurses and asked again for my pain relief. When met with the same mundane inaccurate response, I said with my best sweetly menacing smile... 🏥🕛 "I was told that just over 2 hours ago, my pain was in check but it is now starting to get to a point where tears are forming. I don't care who does it, I just want my pain relief!" 💉💉💉 She arrived less than 5 minutes later oxynorm in hand. 👍💉💉✋ (at University College Hospital)