Chapter 34: Diary of a Disabled PhD Student
Posts 330-339: Perseverance makes perfection towards your cause, not others perception of perfection (28.3.24-8.4.24)
Context: These posts are found on my Facebook Diary of a Disabled PhD Student
I collated posts from my Facebook Diary of a Disabled PhD Student page into a Word version. A selection of these Facebook posts are in the Word version of my PhD thesis. Here, on this ‘The Diary of a Disabled PhD Student’ part of my Substack website, I collate all my Facebook posts so you can see in chronological order from when I started the Diary on 20.4.2023. Each Chapter is 9 Diary Facebook posts in chronological order. I have given the chapter a theme underneath the heading title above. There is a photo at the end of each post related to the discussion within that post. My Substack also hosts 1) The Disabled Peoples Project and Disabled Actors Project, which show biographies of different people with disabilities on different social media platforms (I am the creator, editor and contributor) and 2) The Creative Writing Hub. I reference these aspects within my Diary along with my Medium articles and Talks during my PhD. My full research website where these components can be found is www.linktr.ee/disabledphdstudent. My Diary posts reflect on different aspects of my research website together with reflecting on daily life from having disabilities and chronic illness, my experiences during a unique and unusual period of my life doing a PhD, along with other snippets of my life not related to either! I also discuss various digital media creators, journalism and TV sources within posts along with interviews done during my PhD period.
N.B I say ‘unique and unusual’ because only 2% of the UK population have a PhD*, with little research surrounding the intersectionality of those who have completed doctorates. However, indicators* suggest few disabled, working-class people complete a PhD out of them 2%. When I graduate with my PhD will mark my 20th anniversary of being a mature student at the same university. As a working-class middle-aged woman with many disabilities and chronic health conditions from a family of intergenerational struggles, I explored during my Diary of a Disabled PhD Student how the heck I got to this point. With the hope to break down the ‘Glass-Ceiling’ for others who face struggles wanting to pursue their dreams, whatever those dreams may be.
*current figures only record up to age 64!
Chapter 34 below contains Posts 330-339 (28.3.24- 8.4.24) from my Diary of a Disabled PhD Student.
Chapter 34 Posts 330-339:
Post 330- Practice makes perfect - 28.3.24
I was getting a bit better. I took my PhD frustrations out on the kneading, which made it rise better.
Post 331- Strange Co-incidences - 31.3.24
I have done a series called Digestive Disease Diary / Modulen Diary on my TikTok diary page. I’ve included the links to it below.
Modulen is a liquid-only feed for inflammatory bowel disease, ulcerative colitis/Crohn a digestive disease. It’s prescribed in the U.K. as research suggests success by giving the intestines a rest as much as possible whilst providing the body with enough nutrients. However, research focuses on success rates for children as compliance is better as it’s extremely hard! Also, most research just focused on Crohn’s rather than ulcerative colitis. Also, when eating food again, the success rate returns to square one. Nestle, who makes Modulen, has introduced ‘Modulife,’ which gradually introduces solid food after around eight weeks (individual). For example, I was on modules only for eight weeks. Now, on ModuLife, I’m introducing 50% Modulen and a strict list of residues (low fibre) limited foods for six weeks, then gradually introducing some new food groups. Often still on some form of Modulen. Some people like and hate the taste. Lucky for me like it, and it tastes like sweet milk. It’s a powder mixed with water.
I’ll do some more posts about it. But I started it on 1st February 2024. So, I gave up solid food and caffeine. I started drinking caffeine when introducing limited food on Friday, 29th March, which coincides with Lent! (Not intentional). Ironically, I joked one year, saying to myself one year ‘’ I’m going to give up caffeine one day for lent’’ and laughed at the idea, especially as caffeine gets me through the day with energy levels and PhD! I realised when giving caffeine up for those weeks how much I rely on caffeine with chronic illness—enjoying my coffee from Friday! Also, a little hack: I’ve put the module in with coffee as it does not allow milk and it tastes a bit like milk!
Happy Easter Sunday, everyone!
Links below to some Modulen/digestive disease TikTok diary:
https://vm.tiktok.com/ZGeautwBg/
https://vm.tiktok.com/ZGeau59d6/
https://vm.tiktok.com/ZGeauC89c/
https://vm.tiktok.com/ZGeauvQmp/
https://vm.tiktok.com/ZGeau4Tkg/
https://vm.tiktok.com/ZGeaum2sF/
https://vm.tiktok.com/ZGeauCC21/
https://vm.tiktok.com/ZGeau5gDn/
https://vm.tiktok.com/ZGeauHKbU/
https://vm.tiktok.com/ZGeaug64u/
(Coffee): https://vm.tiktok.com/ZGeauP39d/
https://vm.tiktok.com/ZGeauC3D2/
https://vm.tiktok.com/ZGeauPbU8/
Post 332- Endometriosis connection with IBD- 31.3.24
Re-introducing solids, I’ve got in touch with the type of pain that I had before with my ulcerative colitis. It’s a deep pelvic pain, too. I had problems with my period before, and the pain is similar. But as a society, we never talk about poo or periods! But there have been some recent campaigns to help talk about these things.
I read some research today that women with endometriosis are 50% more likely to have inflammatory bowel disease. Yet, I never encountered lived experience stories about this in such magazines as Crohn’s and Colitis magazine or news articles. That’s a staggering correlation. Hopefully, there will be more lived experience stories of women having both over time.
https://www.endofound.org/life-with-crohns-and....
https://pubmed.ncbi.nlm.nih.gov/32629225/
https://inflammatoryboweldisease.net/.../ibd...
Post 333- The Wisdom of Rory Sutherland - 1.4.24
Sorry to keep going on about Rory Sutherland (post 333). He speaks sense!
Here, Rory gives an anecdote about a fast-food company. They are immensely popular and lasted the test of time. They refuse customers ketchup/mayonnaise/any sauces, yet they continue with success. There is a power of saying no. If they changed to someone else’s ideal, they wouldn’t offer something new and good. I reflected on the Same in research - to remain impartial and independent and provide rigorous research despite numerous opinions. Sometimes, evidence and defence are the way to go. They even call the viva accompanying a PhD in the U.K. a ‘defence.’ Year 1 and 2 I said that I prefer the word ‘debate’ or ‘discussion’ rather than ‘defence’. But now I see the wisdom of that word being used.
https://vm.tiktok.com/ZGeaVx6ga/ 189k followers just clips!
https://www.tiktok.com/@rorysutherlandclips 189k followers just clips
Post 334- Jet /Between two Lungs digital media creator raising awareness in mainstream journalism- 1.4.24
I have been following @jet on TikTok (between two lungs on Facebook) for some time. She raises significant awareness of cystic fibrosis and has a story in the Daily Mail today. She said there are some inaccuracies in the article but says awareness is good. It’s made me think more- if a newspaper article gets information wrong of the interviewee how likely would that interviewee be to interview with that particular journalist/newspaper again? The same in research. Often, where books are concerned during my research, I found the writer gets it right but changes during processing to suit the needs of the publisher/target. That’s another reason why self-publishing is becoming popular with people.
Follow @between two lungs. She’s brilliant.
This is the Daily Mail article:
https://www.dailymail.co.uk/.../Fewer-transplants-taking...
This link is a recent TikTok video. She previously explained that she normally’s admitted to the hospital with a clear plan (although we all don’t like going to the hospital, including her, she knows she needs to go). Now bureaucracy/ no beds /fobbed off meant an unnecessary delay in admission and struggling at home (she’s since been admitted). So, worrying that someone with high health and care needs was left to struggle like that:
https://vm.tiktok.com/ZGeaV6HXr/
Post 335- the wisdom of Rory Sutherland again! - 1.4.24
Sorry to keep going on about Rory Sutherland (post 333), but he speaks sense!
Here, Rory gives an anecdote about a fast-food company. They are immensely popular and lasted the test of time. They refuse customers ketchup/mayonnaise/any sauces, yet they continue with success. There is a power of saying no. If they changed to someone else’s ideal, they wouldn’t offer something new and good. I reflected on the Same in research - to remain impartial and independent and provide rigorous research despite numerous opinions. Sometimes, evidence and defence are the way to go. They even call the viva accompanying a PhD in the U.K. a ‘defence.’ Year 1 and 2 I said that I prefer the word ‘debate’ or ‘discussion’ rather than ‘defence’. But now I see the wisdom of that word being used.
https://vm.tiktok.com/ZGeaVx6ga/
Post 336- 28 spoons - 2.4.24
So, I talk a lot about spoon theory in my Diary-
https://butyoudontlooksick.com/.../writ.../the-spoon-theory/
With spoon theory- with chronic illness, you have 12 spoons a day. For each task, whether that be cooking, say taking 4 spoons, brushing teeth with 1 spoon, getting dressed with 3 spoons, etc., so basic things, you can soon get into spoon deprivation.
Ironically, I used 28 cans of Modulen during those 8 weeks of liquid-only feed; for those who didn’t follow before, I was on Modulen for my ulcerative colitis, which is a digestive disease. It’s supposed to give intestines a rest as much as possible. I knew it was 28 tins because each tin comes with a spoon. So, I have 28 spoons. Here they are!
I have more tins to get through as half of the module and way things are going might be fully on it again.
Post 337- lots of engagement with this TikTok vlog! The hidden aspect of disability - 3.4.24
So, as part of my PhD research, I do the Disabled People’s Project DPP and Disabled Actors Project DAP. They are biographies and interviews with disabled people on various social media platforms. Initially, this was because different disabled people have different communication needs, e.g. one platform video with captions, another audio, another text, etc. But it proved important for impact on others I.e. reaching more people. Indeed, I found that many of the disabled people I researched have several social media platforms to get more people and raise awareness better.
Anyway, I have the strangest sleep patterns with my illness. I woke up early with a banging head on Saturday morning to see BBC News presenter Paul McCartney interviewing Will I Am about innovation in the electric car industry. I post a lot of TV clips on TikTok and will write a separate post as to why! But in a nutshell, at the start of my PhD, I ranted about the lack of disability on TV. So, I filmed everything related to disability I saw and posted it on TikTok to keep a record and prove there is a lot of disability on our TV! My TV clips posted on TikTok receive a lot of views. A report recently highlighted that most young people (and it appears older by my stats) are now turning to TikTok for TV and news.
People watching this on TV would view Paul Mcarthney as a person with disabilities. However, I completed a biography on Will I am for the DPP and DAP as Will I have ADHD and Tinnitus. This shows that disabilities are hidden, but sometimes we only see the visual, which may be a reason why I initially thought at the start of my PhD research that there wasn’t much disability in our media, when in fact there is.
I will link to Will I Am's biography here when I collate the links.
Here is the link to the TV clip I posted on TikTok, which created a lot of engagement:
the
people
Post 338- The analogy of bread - 6.4.24
This PhD thesis frustration can work wonders with bread. Ironically, I can’t eat any of it yet as I’m on a low-residue diet and a module for ulcerative colitis. But Mum says this one tastes the best one yet. The motto of the story is that Rome or bread wasn’t built in a day. Perseverance, consistency, and habit can improve things.
Photos from today.
TikTok vlog of the bread-making diary - showing that sometimes methods work, but sometimes, despite using the same ingredients and methods, they just don’t hit the same spot. Tried and tested methods are great. But sometimes, thinking outside the box, practice, and new technology can help develop the simple things in life. Ninja 15 in 1 lets me with disabilities experiment with bread much better. It’s an air fryer but also has a steam bread function. It’s on the worktop, so you don’t have to bend down too. Even though the original intention wasn’t for disabilities, an air fryer can be a great disability aid. It tastes nice. Yes, I’m extremely tired after, but it gives me somehow a sense of achievement.
https://vm.tiktok.com/ZGemxue2m/
Post 339- Presentation of Tree Theory chapter and concept - 8.4.24
Here’s a talk/presentation I recently did at the autoethnography network about a concept I developed during my PhD called Tree Theory and a bit about my PhD thesis.
Autoethnography is a research method where the researcher explores their lived experiences.
The above link is also found on my main research website under the ‘talks during my PhD’ tab:
https://linktr.ee/disabledphdstudent
