Posted in Blog

Busy in Wonderland

I’m sorry it’s been such a while since my last update! It’s been sooooooo busy in the Wonderland!

PIP Assessment

If you guys follow me on social media, you’ll know that I’ve been working with Epilepsy Action on their PIP Campaign, to help raise awareness. My application was rejected (qu’elle surprise) and although the Government are finally acknowledging that Epilepsy is about more than just seizures, we unfortunately still have a long way to go in the fight. The bigotry makes me so angry; I worked for ten years, to the point of almost killing myself and now I’m asking for a little bit of help while I get back on my feet, I get told by Government officials that I don’t look sick enough – it’s disgusting. I will be appealing, don’t you worry. 
Coil Replacement

I had my IUD replaced, and apart from a few bits of spotting here and there, it’s been plain sailing! The scan was clear (thanks for letting me know Whittington Hospital… NOT) so hopefully this means no more periods 🤷🏾‍♀️ at least humungously painful and heavy ones anyway. The procedure itself was dire, they gave me absolutely no pain relief, complimenting the rhetoric that Black women need none right? I did ask for some beforehand too. The gynaecologist kept on telling me how fucking brave I was and offered me a cup tea afterwards. I politely declined. My legs were still trembling from the trauma 8 hours later. 

Studies

I’m currently just over half way through my second module of my MSc and I hate it 😒

Social Psychology itself is incredible, however our professor is horrendous and I’ve already had to file a complaint about her. She knows absolutely nothing about the module, which was evident from the start. While in A&E a few weeks ago I stalked her on the Internet and found her poorly rated on ratemyprofessor.com

She frequently misunderstands our work because she doesn’t understand the module (God how do these white people get jobs??), and then poorly grades our work. She’s a joke. We have to do a Research Project on a topic that hasn’t been done, so I’ve chosen discrimination against Invisible Disabilities – specifically Epilepsy, and why people implicitly discriminate, yet when it comes to more visible disabilities, society is more likely to show empathy. I’m also arguing that research has never used qualitative research methods (questions, interviews) to able-bodied people as opposed to disabled people, to find out why people discriminate. Everybody in my class gets it, except her. So she gave me a D for the question and concept. Furious. I’m trying to argue it – my partner advised me to take the humble approach, as opposed to the angry, Black woman approach… I’ll let you know where it leads. 

This research is so relevant because society really doesn’t understand invisible disabilities. In fact, a troll commented on one of my PIP YouTube videos and called me a “benefit scrounger”. They also said, and I quote: ” I know loads of people with Epilepsy who have full time jobs. Go out and get a job.” On another of my videos, the same person told me to: “move out of London and find a job”

Would this same person say the exact same things to a paraplegic I wonder? 

I’ve come head-to-head with her before: during our last module, we learnt that Psychology is heavily Westernised which I proved in this module during a forum discussion, by pointing out that research rarely uses Black European or African-American people (I had articles for reference) and she tried to prove me wrong by referring to this one study she’d read, about facial expressions. She didn’t even reference the damn article! 

It hurts to be this clever 😒

Finally… I nearly died last week. I’m deadly allergic to cashew nuts and I accidentally ate a fruit bar that had them in it. I was alone in my flat at the time, and I had to send my partner a message on WhatsApp to call 999 because I was struggling to breathe. 

Death by suffocation, is not how I want to go. 

Seconds feel like hours.

Your life doesn’t flash before you, but I remember thinking about my partner and that I would never get to see him again…

I’ve never felt so scared in my life. 

It was my partner who gave me the frickin’ bar, so I must admit it took awhile to forgive him, and it took awhile to forgive myself. I hadn’t had a reaction like that in 10 years because I’m usually so careful. There was a Black matron who after dealing with the shock of seeing me on the resus ward, then laughed at me once she heard that the cause of the anaphylaxis shock was a fruit bar, because in her eyes I’d caused my own suffering. Not all skin folk are your kin folk, right? Bitch.

And that was my second time in hospital in as many weeks. My first time was because I started having leg pains again and after going to see Placebo @O2Brixton, I reeeeeeeeeeaaaaaallly fucked it up and could barely walk so I went to see my GP. He advised me to go to A&E considering my past history with the Whittington (blood clot), plus my mum having had one in the past. I went to the Royal Free Hospital, which although is an NHS Hospital is by far the best I’ve been to. I was given a blood test and scan within two hours. It turns out that those DVT blood tests regularly give false positives, so the chances of my having had a blood clot in the Summer are extremely low 😒 which is great to hear, but fucking annoying. The Whittington told me all kinds of shit, probably wasn’t true. Turns out it was a musculoskeletal strain from the tonic clonic seizure I had in May, which will probably keep flaring up. 

The best way to help it is not keep it elevated, non-mobile and therefore gain a stone (thanks Whittington 😒 this place is probably the worst hospital in London methinks?) but to stay active, because it’s probably going to re-occurr with any seizure (focal onset or generalised). So I’ve started running again. I’m not setting myself any targets for distance or anything, just getting myself out for a certain amount of time, every few days and taking it gently. See how it goes.

The endorphins are beautiful 😍

It was during this stint in A&E by the way, that I stalked my Professor. Not last week… where I was almost dying. Priorities lol. 

Oh and I FINALLY HAVE AN APPOINTMENT FOR AN ASSESSMENT TO SEE A PERSONALITY THERAPIST!!!!!! NEXT WEEK!!!!

Finally, finally I think those are all of my updates!

 I’m going to be uploading a YouTube video tomorrow, in the midst of catching up on my MSc reading (so behind!). Please subscribe to the channel!!!!!

Love you all!!!

Author:

I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

One thought on “Busy in Wonderland

  1. I’ll just say it’s nice to know you’re still with us. That looked like a serious allergic reaction. I’d go so far as to say you’re lucky to be among the living, god must have a plan for you! And it looks like you’re fulfilling it. I think the work you’re doing to spread awareness about invisible disabilities is great. A huge problem in societies around the world I bet. You’re strong for taking up such a cause 🙂

    Thanks for the update. We will keep our eyes peeled for your video. Stay strong sis ✊🏾

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