A 'Dis'abled Girls Life

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

13/09/2025

Why doesn't anything just go to plan for me?

No home :( been waiting for hospital transport home since yesterday afternoon but its now a good job they have been taking so long as district nurses have just rang the ward and told them they want more input from tissue viability etc before they will accept me due to having to pack my back with so much :'( this can't even be started getting sorted out until Monday morning so it's gonna be at least next week now before home - thats even if they accept me :'(

I'm so upset as I got all my hopes up and was ready etc and now this :'( :'( :'(

Well that's a hefty discharge 'letter' - more like a bookalet! 🤣🤣Nurse says it's the thickest she has even seen lolI alw...
12/09/2025

Well that's a hefty discharge 'letter' - more like a bookalet! 🤣🤣

Nurse says it's the thickest she has even seen lol

I always find reading your discharge letters very interesting. Finding out alsorts of new things from new diagnoses, to findings on tests, to the type of things they are expecting to find on certain tests etc

It's all very informative but it does put into perspective everything that has gone on these last 8 weeks and how much further I have to go before we gone fully find all the answers

I feel like we are playing dot to dot. All these new dots keep appearing - more and more everytime they look but all the dots aren't there yet so we can't make a complete picture until we find them all then hopefully I'll get an answer and fingers crossed its something that something can be done about :)

12/09/2025

That 4 letter word I've been wait to hear for almost 8 weeks has finally been mentioned on ward round this morning. Can you guess what it is? :D :D

I did it :D I had my PET scan :) it wasn't nice but everyone around me was absolutely lovely and really helped keep me c...
11/09/2025

I did it :D I had my PET scan :) it wasn't nice but everyone around me was absolutely lovely and really helped keep me calm. I am so proud of myself :D

Keep an eye out for my vlog coming soon of the whole experience of getting a PET scan :)

11/09/2025

PET scan finally happening today! Just had the radioactive dye injected so now waiting in a room on my own for an hour to let it do its job then I'll be having the scan :)

Rash on my leg (now thought to be cellulitis) is spreading and my CRP levels have shot right up but thankfully my observ...
10/09/2025

Rash on my leg (now thought to be cellulitis) is spreading and my CRP levels have shot right up but thankfully my observations have stabled since yesterday however not adding more antibiotics to the mix just yet (I'm already still on for my back which I've had for about 4 weeks now) but Infectious Diseases and microbiology have put a plan in place if I go downhill again what to give me but hopefully that doesn't happen :)

10/09/2025

PET scan didn't go ahead this morning :( miscommunication between nurses and specialist diabetic nurse meant I'd had insulin an hour before my appointment when I have to have none for 4 hours so it couldn't go ahead - f*****g fuming!

Was gonna have to wait until next week for a new appointment but the staff nurse who was with me from the gospital I am in (I had to go to another hospital for the scan) managed to get me an appointment for 9.40 tomorrow morning!

Something always goes wrong but hopefully tomorrow I finally get it!

Urgh :( I've been pretty much stable for the last 3 weeks here in hospital other than my back absess. I've been on antib...
09/09/2025

Urgh :(

I've been pretty much stable for the last 3 weeks here in hospital other than my back absess. I've been on antibiotics for the last 4 weeks or so.

Today I wake up feeling horrendous - fever even after IV paracetamol. And I am NEVER cold! high heart rate, low blood pressure, electric stocks through my stump which I always get at the start of a bad infection. Whilst washing me they also noticed on my remaining leg there is a large red rash which is very hot to the touch so they have drawn around that and shown the doctor.

So we now begin the fight to get blood test from me and I need a new cannular - last time it took 13 attempts - all of which they used the Ultrasound, 4 doctors and ended up being an ICU doctor.

But it's s**t thay this has started today xoz ots my VERY important PET-CT scan so I just hope this doesn't affect having that :( as lots has been put in place for it especially as its at a different hospital

04/09/2025

Bloods checked yesterday show my hemoglobin is low and I am bordering needed another blood transfusion

Dont think people realise how much blood I'm loosing from my back until they actually see it

Do you know what I find absolutely crazy? In hospital they have the snack trolly come round with drinks. Available on th...
03/09/2025

Do you know what I find absolutely crazy?

In hospital they have the snack trolly come round with drinks. Available on there is cakes, biscuits, crisps and sometimes even chocolate bars. But do you know what isn't?

FRUIT!

It's drummed in to people to eat healthy and loose weight etc yet when I ask for a piece of fruit I get looked at like I have 3 heads! They just don't have it. The only time you can get fruit is as a dessert with lunch and tea.

Why isn't fruit more readily available? It blooming well should be!

Health Update I am still in hospital. Will be 7 weeks on Saturday. Plan is to have a PET scan next Wednesday to see if a...
03/09/2025

Health Update

I am still in hospital. Will be 7 weeks on Saturday. Plan is to have a PET scan next Wednesday to see if any of my lymph nodes are inflamed and if they are they can then biopsy these.

Also may have grown a bacteria on the wound on my back so they are doing more bloods today to look at that and I may need to go back onto IV antibiotics

Getting very fed up of being here and more than ready for home :-(

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