Mindblown: a blog about philosophy.
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Navigating A&E with a Chronic Illness
When you have a chronic illness like Crohn’s disease, you get to know your body in a different way. You learn to read the subtle signals and recognize when something is seriously wrong. My recent trip to A&E was a reminder of the unique challenges this presents to patients with Crohnic illness – The people…
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Dear me … from me.
How incredible would it be to send a letter to your past self?! The shortest of messages that just says – it will be ok. A year ago today, I woke up in intensive care after having major surgery. I remember bits. I remember Coldplay playing in theatre before I went under. I remember the…
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Autopilot
It’s funny how quickly you can find yourself in a pattern or a routine. Normal happens without much thought or planning. You blink and that’s it. My normal has changed considerably in the past year … almost exactly a year in a few weeks. My body has gone from being thrown around from country to…
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Infliximab Round 1 – Here goes 🥳
Infliximab | Round 1 – Here we go! ✊
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More good days than bad 🧡
Finally more good days than bad!
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‘Not my circus, not my monkeys’ just makes you a clown 🙈
Imagine going to a coffee shop and being unable to physically get through the door …
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Goodbye 2022 and Looking forward to 2023
Saying goodbye to 2022 – a rough ride of a year but funnily enough, not all bad. Lessons have been learnt and changes made for the better!
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I feel a bit … normal …
For the first time in 6 months, today I have felt a bit normal! Background – Friday I saw my old hospital cell mate Liz (Hi Liz!) during a hospital appointment. Liz was in a bed opposite me for a week few days/a week of my sentence stay … I can’t remember, it wasn’t very…
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I’m dreaming of a Crohn’s free Christmas
… just like the ones I used to know! 🎄 Today we realise the obvious. I have no control over what happens next! This week I have been told I am in a ‘flare up’ which in real terms means inflammation and pain vs remission which means business as ‘new normal’. So now we take…
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Tired and Dramatic …
My problem is that my brain is fine, it’s just my body that is not always cooperating.
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What a difference a week makes …
… so far the world made me shave my head, get a tattoo and now dye my hair pink … I think I just need to buy a camper van and that will be my transformation complete! 🎉
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This ain’t no Fairytale …
This ain’t no Cinderella Fairytale … Mental Health struggles will not disappear at midnight alongside the strike of 00:00 on a clock. #WorldMentalHealthAwarenessDay2022 can only mean something today on Monday 10th October 2022 if it also means something on 11th, 12th, 13th and every other day, of every other month … otherwise it means nothing.
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Good times ahead!
This is a once in a life time opportunity. I would never have CHOSEN to cut my hair short, let alone this short! But this is where we are so we might as well have some fun! and now it’s done 🥰 … and I actually kind of love it!
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Because I can, can, can 💃
Going from I can’t to I can’t ‘yet’ has been so powerful!
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I am not ok – but I will be
If you know me, you know that I am not ok. If you ask me, I will smile and be positive and say all the right things. But I am not ok. I will put one foot in front of the other and carry on carrying on but know that I am not ok. Don’t…
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How are we doing?
Asking for help should be encouraged and welcomed for those who need it … why is it proving so hard?
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Weekend Vibes 😎
Checking back in after a few days back at the world of work … I’m so pleased to be back! (Such a Weirdo!😂) Genuinely though, having the routine set, get up, nurses come in the morning have breakfast and my shrinking cocktail of medication, get ready and start my working day 😊 is making a…
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Heading back to the real world … ish
Heading back out into the real world … well a baby step at least.
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Waiting for a life on the outside
As I wait *patiently* for my new normal to begin, it feels like the world is on fast forward around me. I am sitting still in a world of weddings, festivals, parties, bbqs, gatherings and even walks in the park or on the beach that I cannot participate in. It feels like all I do…
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Calling on Dr Google and Social Media once more!
Please note, yes, I have NHS rage … but my rage is at the current state of the NHS not the NHS itself … If you, like myself are bored of my moaning, please enjoy the photo of my dog 🥰 Current Rage As I have mentioned numerous times, my hair is falling out. What…
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Tears and Timelines
“Coping with a long-term condition can have a big impact on your mental wellbeing too – research suggests that people living with Crohn’s or Colitis may be twice as likely to experience mental health problems as the general population.” Crohn’s and Colitis UK 👆 Well that’s good init! It really doesn’t come as much of…
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Update: 15th August
Thursday Nurses Nurse Nurses … First nurse of the day is Monica the Stoma nurse. Where I used to see Lisa and Nav in the hospital, Monica and Debbie will be my out patient Nurses. My uncle also sees Debbie and tells me ‘she’s alright’ which is actually very high praise 🤣. Monica checks my…
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Update – 11th August ☀️
Monday I was so bored … no one came round, nothing to do, I potter from seat to seat trying to find somewhere to comfortably wait until …something. I go online and look for the ‘thing’ my do at home thing that’s going to occupy my brain. ‘Make your own soaps’ … no. I did…
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Insta vs Reality
To counteract the poor sleep caused by EVERYTHiNG, I have decided to try and take control. At the moment I am living between two Options – I fall asleep and get a good(ish) night sleep, I sleep too soundly and forget to deal with the stoma bag during the night and deal with the shit-uation…
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Tantrums to Sunflowers 🌻
This morning was tough. Mornings are generally slow. Issue is, when I sleep, if I stay in the same position for too long, my back muscles seize up and I cannot move. Whichever position that is. This morning I woke up and I could not move. I rocked from side to side for a while,…
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In the darkest places, you will find the brightest lights ⭐️ A Bear named Buttony
Imagine being 4 years old and waking up as I did? Waking up in Pain, surgery, pain, stoma bag, do’s and don’ts … and your only little, you don’t understand. Imagine being that parent … In the darkest places, you will find the brightest lights ⭐️ After leaving the negative Facebook group and then my…
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Dr Google will see you now … no one else will 🥸
I have been patient but is anyone actually going to tell me what Crohn’s is or is Dr Google and Professor Instagram the way forward? I am irritated. Actually, no I’m not. I’m pissed off! First hospital admission 8th June, actually call it 9th as it was gone 1am please note that today is 1st…
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Happy New Hair Day
Rubbish nights sleep blah blah … found my comfy spot about 6am blah blah slept until about 10:00am… but nobody cares about that, it’s new hair day!!! 🥳✂️💆♀️ Pain killers, beakfast, Up, dressed, ouch, knock knock … delivery … 4 boxes, all for me 🥰 2 x boxes = interior door handles 1 x box…
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Adapting to Home 🏡 Day 2 = grumpy (mostly)
Day 2 – Thursday I could not get comfortable and had a very disrupted nights sleep… ☹️ … Which did lead to grumpy Leanne this morning! Sorry Lana, Sorry Mother. Sorry Lisa, Sorry Kerry 😬 Lisa calls to see how I am and instantly regrets it. We talk about her little people, Millie is on…
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Adapting to Home 🏡 Day 1 = Happy
Day 1 – Wednesday … A bloody good nights sleep! No beeps, no lights, no blood pressures, no screaming, nobody trying to find ‘the front door’ 🥰 Morning Boring 🥰 Just how I hoped it would be. Woke up around 07:30am feeling very happy and snuggly in the spare room (my bed is far too…
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Can I go home now? Spoiler – I am home now 🥳
Updated throughout the day of discharge … Tuesday 26th July ~ 6 weeks and 6 days after admission 05:09am Just got up went to the toilet … too early … not yet works. 6am Lara comes in to do Obs, all good. I love Lara – she is every thing a good Health Care Assistant…
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The road to home … and a tour of my new but temporary stomach landscape.
4 out of 5 of the teams looking at after me gave me the green light to go home last week. Doctors – bloods and obs are good, have been consistently so for a little while, no temperature spikes, they would have kicked me out last week if it was not for the Tissue Viability…
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My Mental Health
After Wednesday nights shock horror of the hair situ ‘Hair today, gone tomorrow’, I have added an image for anyone who was not aware of the fabulous hair vibes delivered by miss cousin Kerry. Girl went to Hogwarts, and earnt too NEWTS in Hairology. 🪄🧙♀️ Now I can acknowledge both photos, in the same way…
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Let it go, let it goooooooo
Change the headline 👆 Literally that is what the template says and it is correct. Let’s change the focus up. I am was so upset on Wednesday and I own that, I needed that, if I didn’t get upset then, I just would have done later. Now it’s done and resident hair wizard cousin Kerry…
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Hair today gone tomorrow
Auntie Lorraine and Mum came for a visit 🥰 Lorraine is just back from holiday and is all tanned and fabulous! I did ask Mum to help me do this but it timed perfectly with my auntie hairdresser coming for a visit 😌 So they came, I had a little of my dinner of hummus,…
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Bored now
Today I have been bored. Oh so very bored. I woke up … no I didn’t, I was awake all night. *Vera the Vac was playing up and calling out an error message every 2 mins. So the Tissue Viability Team create a very fancy dressing to work with Vera. Ignore the pink dressing bellow…
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Just a bit sad
The sadness, the tears, the emotions do not come at set times. There is no schedule. I can feel fine all day and it might catch me in the evening or the morning or at 3am. It was like this today. I have been working over the past few days on THE significant blog for…
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Thank you – The power of your kindness
I have been absolutely overwhelmed with the kindness that I have received since being in the hospital. Each and every person who has messaged me, called me, visited me, sent me cards, sent me gifts, sent me their best wishes, sent me prayers and have continued to keep me in their thoughts throughout unquestionably the…
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It’s always darkest before the dawn
I am an emotional person and very empathetic. You will see me shed a tear or two at most things 😂 happy or sad or ‘Look how happy she is’ with tears streaming down my face, or if a loved one is hurting, I will be crying with them, it feels like I can feel…
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A bad night brings a good day 🥰
After a terrible night last night, a good day began. I awoke in pain (not the great bit) which is not unusual. The key to a good or bad day comes down to staff on the ward This is the mix between Nurses who are medically taking care of you administering drugs, changing wound dressings,…
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At what cost …
A 06:00 post is never going to be good really is it. Laying here staring at the ceiling, having spent all night fighting for the painkillers I am prescribed, at the time I should have them, to the response of but we are really busy tonight, you will have to wait. Compared with every other…
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Know you are loved
Taken at Mudeford Quay, July 2021. I knew this was a special stone and would loved to have brought it home but couldn’t, I imagine it would have meant something to many others that saw it too ❤️
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Please can you just hold my hand
This is the first post that I am writing in real time. I still have more of my story to add to get us to this point so this will be missing a hella lot of context but I am playing catch quite quickly so bare with. Today has been a shit day I use…
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Life on the Surgical ward … the new normal – 22nd June 2022
Morning comes around, my first back on a real ward since ITU and with it, the madness begins. We Meet the Squad From 8am Breakfast there’s a constant stream of faces popping into to say hello … first up is Mr Saga. You never see A doctor, you always see 6. So I am laying…
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Emergency, Intensive Care and Beyond
I wake groggy and confused, in the weirdest room I have ever been in. There is only one bed that I can see and I feel like I am tied to it. I zone back out. I wake and Mum and Dad are there. They both look emotional, where am I? It’s bright but also…
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The scariest day of my life
Being discharged from hospital on the Friday was the happiest I had felt in a long time. 🥰 The Sunday the world changed fast. On the Friday during discharge chat, the Doctor had gone into more detail about Crohn’s and drew me the below diagram of my bowel and how part of it was inflamed…
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Finally going home … very briefly 😬
Everyday for 10 days the Doctor came round. Everyday for 10 days they talked more and more information at me. Everyday for 10 days they asked if I had any questions. Everyday for 10 days I had one question. Can I go home now? And finally after 10 days I got the answer I had…
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Life on the medical ward …
I am in past tense still and am going to share my highs and lows of the 10 days I spent on the ‘Medical Ward’ directly after admission. Thursday 9th June So I wake up on day one to see the Medical Ward in all it’s 5am glory … if you have slept to 5am…
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Death is everywhere …
Each night, alone in the dark surrounded by fear, pain and emptiness, my brain flitted off to two popular locations – 1) Is this it, is this the night that I die? Is this the HOW? My stomach will explode or whatever the hell it is doing? Will it be my Mum or Dad who…
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Hospital Admission 🏥 – take one …
So after seeing my new hero 🦸♀️ the Urgent GP at the hospital who really saw me and listened to everything I was saying, Mama dearest had her lioness/take no prisoners hat on and was coming with me ‘screw the bloody rules’ as I headed over to A&E to be seen by the ‘Medical and…
Got any book recommendations?
My unwilling journey with Crohn’s Disease 