A 'Dis'abled Girls Life

A 'Dis'abled Girls Life Watch as I tackle the world from the view of a 31 year old hoist transfer, disabled, wheelchair user

MDT meeting done and dusted. All being well we have a plan for discharge :) just gotta have a few things done on certain...
17/11/2025

MDT meeting done and dusted. All being well we have a plan for discharge :) just gotta have a few things done on certain days before I can be discharged but at least an end is in sight again.

However my body heard the word home and kicked up a fuss and my oxygen saturations were going low even for me so I'm back on a bit of oxygen :( hopefully just a random little blip and nothing more!

17/11/2025

Wish me luck for today! I've got a big MDT meeting. 16 invites have been sent out so looks like it's gonna be a rough one! I just hope it gets me closer to home :D

14/11/2025

My hospital bay best friend Janet Dawes left me today to be discharged home after being wifh me for the last 4 weeks or so.

Obviously I'm so glad she is ready for home but sad now she has gone. It feels lonely :(

She has already called me tonight to say she misses me and all the banter.

Thankyoy for keeping me company all this time and im glad i was able to help you so much at the beginning with your mask and co2 etc when you were very poorly

Now make sure you behave misses and wear that blooming mask! :)

If its not one thing its a blooming other :( The hope was that once I've finished my treatment for sepsis and we have *f...
09/11/2025

If its not one thing its a blooming other :(

The hope was that once I've finished my treatment for sepsis and we have *fingers crossed* saved the line that we can then have everything in place for me to go home. I was close to discharge when I became septic and things obviously got put on hold.

Well now my care agency. Who have been kept on doing 0 work on a substantial retainer pay are now (only just piping up and saying now on week 17!) That they aren't happy to receive me back without all of their questions and demands being met .

I am tired of feeling like a pawn in a big game of beauracacy between people who don't have 1 single clue about me or my life and my wishes! Nor have they made any effort to find out about my priorities :(

Oh Lulu - I am so so thankful that Luna has people all around her who can look at her whenever I'm in hospital and I am ...
06/11/2025

Oh Lulu - I am so so thankful that Luna has people all around her who can look at her whenever I'm in hospital and I am so proud of how she takes it all in her stride and settles where ever she needs to.

But I hate that that is something she has to do. She shouldn't need to be comfortable anywhere other than home.

I hate her going through all this upheaval all the time. Especially at the moment. She has been away from home for 4 months now! Poor baby probably thinks I've kicked her out or something. Oh it breaks my heart to think that she thinks that even if just for a moment.

But I'll be home soon Luna I promise.and you'll be back where you belong at home with your 2 sisters

Had a bit more of a quieter night last night although I barely slept for some reason.My fever seems to have broken as I ...
05/11/2025

Had a bit more of a quieter night last night although I barely slept for some reason.

My fever seems to have broken as I haven't spiked a temperature since yesterday which is positive although I am still struggling with my breathing and keeping my Sat's levels up even with the oxygen so I'm not quite there yet.

I am absolutely exhausted. Like the tiniest thing is a huge effort. I've never felt exhaustion like it. Even things like just taking a sip to drink! Its taken me over an hour to write this out.

Seen several doctors this morning. I seem to be seeing a fair few different specialists since what happend over the weekend but that's only a good thing :) means I am being kept a close eye on :) plans are to continue as they are with trying to save the line to keep everything crossed still please! They have increased my dose of IV antibiotics and I'm currently waiting for the line lock to come from another hospital :)

My CRP (inflammation infection markers) are coming down. Apparently the other day they were over 250!! Bare in mind they should be less than 3!
My levels are 139 now which is still severely high but a huge improvement.

Really hitting home how poorly I have been the last few days.Coma, in critical condition, Next of Kin contacted and told...
04/11/2025

Really hitting home how poorly I have been the last few days.

Coma, in critical condition, Next of Kin contacted and told that this is as critical as it gets.

All the talks about my wishes and the hardest part of it all? Seeing my mum cry as she is terrified of loosing me :'(

I've got septicemia which has lead to sepsisand it looks to be caused by my hickman line. Normally in this situation they would straight away pull the line but we all know how precious this line is so infectious diseases are treating me under their complex cases and are doing everything possible to try and save the line.

So please cross your fingers and everything you've got that we can save this line! But it's gonna be a long slow recovery

03/11/2025

Been really poorly yesterday and today. Overnight I was unresponsive. I'm on IV antibiotics, IV fluids, IV paracetamol and IV cyclazine. I've got sepsis and been extremely poorly

ICU consultant just been to have a conversation about things no 32.year old should have to think about! :'(

02/11/2025

Been really quite poorly last night and overnight

Temp up to 40.9
O2 85 without oxygen -88 with
HR 117
Blood pressure a bit high

I can't fault how thorough they have been with tests

And the electric shocking pains in my stump are correct again!I started to feel a bit funny so we checked my obs Heart R...
01/11/2025

And the electric shocking pains in my stump are correct again!

I started to feel a bit funny so we checked my obs

Heart Rate 106
Oxygen 85%
Temperature 39.2 after paracetamol

Something is definatrly brewing imagine my body!

01/11/2025

How difficult is it to get someone to look in my ear when you are inpatient in hospital?

Basically long story short my left ear has been 'popped' (like on an aeroplane) for several weeks now. (Around about when I was no longer positive for covid). It started just like that and took away most of my hearing in that ear ever since!

It started out just being annoying coz I can't hear but over the weeks I've developed pain in the ear too - especially over the last couple of days.

I've been begging for someone to actually look inside my ear so we can do something about it. I've begged for weeks! ENT department have been contacted several times and refuse to come and look at my ear and instead tell me that I need an outpatients appointment with audiology!

It's elearly infected you can tell it's swollen and inflamed inside but other than 2 junior doctors shining their phone torch in it nothing further has been done and the pain is just getting worse :'(

I'm in a hospital! Why is this so difficult?! We only need someone with an ear torch thing to look inside my ear and tell us what needs doing. I don't need audiology in months time!

01/11/2025

And the electric shock pains in my stump (that make me yelp outloud) have made an appearance which usually means I am getting an infection somewhere in my body. It's usually right about 80-90% of the time but I wish it would stop because its agony :-(

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Kingston Upon Hull

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