Diary of a Disabled PhD Student

06/07/2024

Post 394- Screw found- 6.7.24

In post 284 in November 21st I said that a screw came out from my bed table which is kind of an ability that have I got a screw loose. I lost the screw after putting it in a different place than I normally would when these type of things happen. This led to months of a rocky bed trolly- I had to balance the laptop on the far right because it was tilted down to the left and any further to middle or left would have meant the bed crashed.

Anyway found the screw. The bed trolly is now restored. I now have a level robust table. I can now move the laptop anywhere on the table creating more room for other things on the right.

Photo left post 284 about the screw being loose in November some 8 months ago. Right- table and balance restored now meaning far more comfortable.

04/07/2024

Post 393- a different kind of July 4th- 4.7.24

In England women couldn’t vote until 1918 and then it was limited to over 30 who own property. It wasn’t until 1928 that women could have equal voting as men following the Suffragettes campaigning. So less than 100 years.

I’m lucky to be able to vote so I made the effort even though difficult to go. My polling station is also very disabled accesility wise so again I’m privileged as there’s been much coverage on social media about probels with disability access at polling stations.

Most of all I made the effort for disabled people all over the country who have been demonised. Not saying it will be perfect with Labour as I’ve talked about many situations under Labour of difficulties- but there will be hope. Someone on tv the other day said people want ‘radical change’. Will the current Labour do that? Not so sure. But there will be hope instead of the government making disabled people feel grateful after they’ve ripped their life apart.


Photo below: pollling station

04/07/2024

Post 392- childish humour- 4.7.24

This came up on my private Facebook memory from a few years ago. Which is better the ruler or rock though is an afterthought- both have their own purposes in the right environment!

03/07/2024

Post 391- strange irony and contradiction- 3.7.24

From my private Facebook yesterday. Kind of sums it all up

03/07/2024

Post 390- never thought I would be glad for bad weather- 3.7.24

Weather on tv said it’s going to rain and be miserable. I’m so glad as not so resentful chained to my bed trolly writing my thesis

28/06/2024

Post 389- single hospital rooms v’s bays - 38.6.24

I’m fascinated by the Facebook group Rate my Hospital Plate where patients share their hospital food. It’s surprising how much they vary. My mind wander back and thinks food is not the only thing that varies- so does single rooms v’s bays which mean sharing a larger room with other patients.

This has received little university research. But in my experience having a single room helps recovery time so surely would be cheaper for the NHS- again little research. People who haven’t been a patient sharing with very diverse people may not understand the full extent how sharing a bay/ward hinders recovery compared to a single room. This post will explain….

The garstro ward has a few single rooms which a couple of times I was lucky to have for only part of my stays. Like heaven compared to the bays. Made so much difference. Had a TV and were en-suite which 100% aided my recovery. Sounds weird right as it’s not medication or medical intervention right ?!

According to reports (linked at the bottom), out of 130,000 hospital beds nationally around 60,000 beds are single rooms. Although figures slightly differ depending on the report. There have been some scoping by NHS to make single rooms and surprisingly there are only aims to make half of all hospital beds single rooms.

When I went about 100 miles away to Knowsley Hospital Trust (which consists of St Helens and Whiston)where I had a hospital operation I talked about in other posts- ALL the beds were single en-suite rooms and this was not only good for me as the patient but helped my recovery. It’s like been given steak instead of processed burgers. The food there was great too.

I always have wondered why the stark difference between that hospital trust and the hospital trust where I live even though a similar demographic in size, city populations, issues and finding. Even though Knowsley could have took the easier option of only providing half beds as single, they took the bold and brave statement of having all single rooms which has definitely left a positive mark on me and others I talk to about the experience. @

You might see the rooms and food as being trivial matters. Maybe our stands have increased- for example it was very norm when going to a B&B on holiday to share a bathroom but now we demand private en-suites. But is that a bad thing. Also if you suddenly had complete strangers come live in your bedroom and share your facilities whilst being very ill would it likely make you feel better or worse?(physically through risk of further infection control and other safety risks but also mentally which can affect physical health)?

I will continue the campaign for hospital beds single private en-suite as default. Free WiFi too (charges and access vary dramatically- also funnily enough Knowsley was free too if I remember right).

https://www.interweavetextiles.com/how-many-hospital-beds-uk/ #:~:text=The%20total%20number%20of%20hospital,this%20article%20in%20March%202024.&text=To%20look%20more%20closely%20at,Scotland%2C%20Wales%20and%20Northern%20Ireland.

https://www.medscape.co.uk/viewarticle/single-rooms-only-new-hospitals-2022a10028j3

https://www.dailymail.co.uk/health/article-11266461/amp/New-NHS-hospitals-built-single-patient-rooms-only.html

https://www.bmj.com/content/375/bmj.n2612

England has the most hospital beds in the UK with 135,574, Scotland has 20,533. Wales has 10,562 hospital beds & Northern Ireland.. Read more

22/06/2024

Post 387- memories thanks to Facebook!- 22.6.24
I had deep cravings for chick whilst on steroids hence the chicken reference - a memory came on my newsfeed

If you are interested in the importance of hospital food - check out Rate my Hospital Plate on Facebook it’s a great group

21/06/2024

Post 386- realities with IBD- 21.6.24

Some people see my wheelchair as my disability. My wheelchair is my mobility aid. My dibilitating disability is ulcerative colitis, which is a digestive disease. Part of a group called inflammatory bowel disease IBD. Please don’t confuse IBD with IBD though. Over 500,000 people in the U.K. have IBD .So Bad Ass blogs and raises important awareness how difficult it can be with ulcerative colitis and she’s nearly died from it.

I won’t go into the full story again my ulcerative colitis journey but I’m praying I can get to creative writing class today. 50/50 at the minute as stomach is unpredictable. Diary of a Disabled PhD Student

15/06/2024

Post 385- day wouldn’t be the same without - 15.6.24

My PhD writing day wouldn’t be the same without bed trolly, laptop, keyboard, mouse, curtains shut, TV on mute, coffee with modulen (liquid feed) in and of course bananas. Since I won a national writing competition which I will share here soon I have had the surreal experience of meeting many published authors, journalists, and TV personalities. It’s amazing how down to earth and modest they have all been. During our conversations I have always seemed to have asked the same question ‘’what is your writing environment?’’
www.linktr.ee/emmaastra www.linktr.ee/disabledphdstudent

14/06/2024

Post 384- glitter balls- 14.6.24

After a surreal star struck few days in London due to winning a competitive national writing and journalism competition (long story and will be posting about it in an up and coming article)…… the in-put over this surreal experience has helped so much with my PhD which I just can’t believe my luck. Anyway today I’m back to the grind. But still on my glitter ball of hope. Editing my PhD for submission and you guessed it bananas on hand!

10/06/2024

Post 383- so glad it’s miserable- 10.6.24

Those who follow know I have the following writing environment:
2) bed trolly
3) separate paper, keyboard, mouse and endless coffee on the trolly
4) TV on mute
5 curtains Shut

Well I opened the curtains especially for the photo - I’m pleased to say it’s not good. I feel less p*ssed off that I’m in here writing my PhD. For a sun lover which helps with my health never thought would say this before my PhD

04/06/2024

04/06/2024

Post 382- How abusive behaviour can spread like a traffic jam-4.6.24

Yesterday, Dad helped me go to the dentist. All that has followed would know I have written a lot about my 'teeth journey' since chronic illness. But it was just a routine appointment yesterday. I was relieved that no work was needed this time. £50 down but money well spent on this dentist.

Anyway, going home on a smallish road through a heavy traffic area used as a cut-through, houses, industrial estate and school run. With many roads leading off. An ambulance was coming on the other side so our car paused to let it through. If we carried on the ambulance would have been jammed. Could see the driver in the white van behind us getting a bit highrate. Then a bus wanted to pull out from a road to the right. Because of the size and layout of the road if our cars carried on our side the bus wouldn't of been able to get out the junction. So our car paused briefly to let the bus out.

'MOVE' from the guy in the van behind. Could hear the order even with the window shut. He then overtook to the left where there was a road/junction to then come in before us kind of undertaking but even more dangerous. He waved his fist up angry as he drove passed. He sped so fast in front to the standing traffic 300 metres ahead. The bus then couldn't get out the junction. The cars behind the white van man followed HIS (white van driver) actions and mentality, screwing their faces in such anger towards us as they were undertaking.

As our car approached the roundabout later on we passed the same cars.

I thought 'what a crazy world we are living in that you can't even let an ambulance (with sirens/flashing lights on) and a bus out without being totally shouted at and told you are the crazy one' and attempt to bully you into doing the same actions as them. I can understand their time is precious, and they are busy people, and so is the case for everyone, especially the poor sod in the ambulance. Are we just all trying to survive and get through the heaving traffic to our own goals? But in doing so makes things worse for themselves and others?

More importantly, I'm left wondering if the bus is still waiting to pull out with his bus load of people hungry for their tea.

01/06/2024

381- repair mode- 1.5.24

It’s been an intensive week which I can talk more about after Wednesday.

I spent 3 unproductive hours at the laptop this morning. I decided to ‘shut up shop’, and have some boiled eggs and advocado (still on the modulife for ulcerative colitis) whilst watching 3 Muskateers on UK Play TV.

28/05/2024

Post 380- Improvising with the TV- 28.5.24

Wherever I go I find a way to have the TV on

24/05/2024

Post 379- B*oody freezing- 24.5.24

Last two weeks I’ve been pi*sed off the bus has come early as I like this time to reflect and have ‘space to think’ . This week I’m p*ssed off the bus isn’t early because it’s b*oody freezing so cold that I can’t think.

24/05/2024

Post 378- Michael Hussey on ‘Impact’- 24.5.24

Michael Hussey says on Lorraine ITV this morning ‘on a date you just see the impact. Seeing the impact isn’t the same as seeing the character……. You see the character over time and consistency which is the most important not impact’.

He also says ‘if you don’t like the culture - create it’ …. Get the new community

24/05/2024

Post 377- Its ok to watch TV- 24.5.24

So those who have followed see I have some writing habits. These are:

1) Bed
2) Bed Trolley with laptop, keyboard, charger, mouse and diary as a mouse mat.
3) Coffee/Chai tea on trolly maybe a banana too at times.
4) Curtains shut
5) TV stays on - have on mute but at times turned back on sound. The volume control button is broke now so press the specific mute button.
6) Phone on bed
7) Toilet available nearby

Lately I have been getting into this routine straight after waking up. Today I’m taking it easy and having a coffee first…… whilst watching TV!!

Quite a few people have said ‘how can you have the TV on whilst writing……. And why bother if you just have it on mute?’.

It may be a running joke why do I have to have the TV on ALL the time whilst been in home. Mostly from academics. In fact when I did my degree we did a Media module and the teacher didn’t even have a TV or watched TV yet critiqued the media world. I did think that was strange at the time. I thought ‘how can he critique when he don’t even watch it?’ But I was made to feel I was the strange one watching so much TV and fell for his superior knowledge so never questioned it out loud. I was indeed the privileged one being taught by someone like him and being in such an establishment as university.

Well I think having the TV has helped me stay with current issues and to be honest I have learned more from TV than any academic book……. And I’ve read a fair few now.

P.s the teacher also didn’t read tabloid newspapers yet critiqued them….. he said ‘the average reading age of them is 7 years old’ to ‘sensationalised fiction/ boring’. I have also learned more from tabloids than academic books and read them (both tabloids and academic books) a lot. Some could argue the academic books are ‘sensationalised fiction and boring’. But even if that comment was true mostly TV and tabloids are easily accessible to people. Academic books are not in so many ways. For example 1) many got to pay for them and often more expensive than other types of books and many not available ebook to phone or kindle like Amazon (some clever so and so will say ‘well we got open access now’ but that’s another story) 2)) see them on a difficult to read platform 3) language is inaccessible. 4) culture of referencing others to make feel more clever ‘therotetical underpinnings’ keep get floated around then referencing an academic who ‘they’ are familiar with. So maybe academia has to work on them aspects more for people to relate to like we do with TV and tabloids.

Image description: left) coffee in bed whilst watching TV right) writing set up bed, trolley, Tab

21/05/2024

Post 376- Its Ok to cry- 21.5.24

I wouldn't advise doing a practice-based PhD- it means doing two PhDs really- the practice project just isn't respected enough for its craft. Anyway, as I'm doing another all-dayer, I listened to this song from one of my earlier Diary posts (long story- I'm collating all these posts into Substack articles). I had a little cry. Now I'm okay and carrying on re-editing my PhD thesis with my bum gone hard.
n.b, please do a practice-based PhD if you are thinking of doing a PhD. The university system needs more!

https://fb.watch/scAmpU_VIF/

20/05/2024

Post 375- accountability of balance - 20.5.24

Mattia Mas does vlogs on TikTok such as this one below ‘defence diaries’. She says doing the diaries gives her more accountability for doing the work. Must have worked as she’s got to viva stage having completed her thesis. Here she prepares for her Viva which is like an oral interview exam at the end of your thesis which says whether you pass PhD or not.

Many PhD students have joined the TikTok platform creating such diary vlogs of their journey commonly with hashtags such as . I myself do a diary on TikTok but incopates all aspects of life especially my vast TV diaries! Called Disability Diary

Anyway in my case it’s not accountability for doing the work, it’s accountability for relaxing. For the balance required during PhD. So as yesterday I said I aim to sit outside each day. As I have solidly been writing re-editing thesis 9am-3.30pm I’m taking 2 hours to sit outside….. if the weather remains good!

Mattia Mas TikTok PhD diaries:

https://vm.tiktok.com/ZGeXmK8t4/

My TikTok diary:

https://www.tiktok.com/?_t=8mViArgKhEn&_r=1

Photo: garden using today’s diary as accountability for balance!

19/05/2024

Post 374- TV review Warren - 19.5.24

Warren comedy series available on Amazon Prime. Episode One starts with introducing Martin Clunes who plays an irritated with everything and everyone driving instructor and about next doors pond!

Hilarious and great easy watching and escapism in a world of seriousness.
***
3 stars (out of 5)

19/05/2024

Post 373- life and De’Ath sums up progress well- 19.5.24

TikTok creator life and De’Ath sums up progress well by this quote. Each day he sits in an ice cold bath for 4 minutes saying different quotes. This one was

‘ the man who moved a mountain began by moving small stones’.

Progress is progress 1% perservernece and keeping on going is important for the end result.

Check out Life And De'Ath’s video.

19/05/2024

Post 372- damn it- 19.5.24

Soon as try get the balance the sun goes in. Just like the PhD and my health!

19/05/2024

Post 371- different experiences of the 90’s- 19.5.24

My 90’s teenage years had a bit of this but more the RnB inner city culture which I might explore more in another article sometime

Before the internet, and the infinite brain-defrag of social media, it felt like a huge deal any time you met someone who liked the same band as you. This sensation of instant connection didn’t have to be particularly niche; I’m not talking about unreleased Boards of Canada demos, I’m thinking...

19/05/2024

Post 370- the sunshine balance- 18.5.24

To mark World IBD day I’ve decided to get far more balanced in my life.

Right I love the sun. I’m not likely to enjoy sun so much this year writing PhD but I must balance a bit more.

The sun helps me manage my health in so many ways as talked about before. Helps manage pain with my conditions too.

So I keep a daily ‘clock in clock out’ timesheet of time and what spend that time on related to PhD. Today 10-4pm re-editing Findings and Limitations. Ironically I have to not only find my own limitations but balance them!-

So from 4pm sitting in garden enjoying the sun. My aim is to do this for at least one hour per day. It may mean getting up earlier to write but I need to do this for my health! I may not have James Martin elaborate garden disabled friendly BBQ talked about the other day. But I do have a reclining sun lounger and the birds to enjoy.

19/05/2024

Post 369- World IBD Day- 19.5.24

https://crohnsandcolitis.org.uk/get-involved/world-ibd-day

From my private page: