Posted in Blog

A New Found Confidence

I’m currently working on a Research Project on invisible disabilities, particularly discrimination and disability hierarchy theory (which off the top of my head I can’t remember who came up with, but the research behind the theory proves that society shows more empathy towards visible disabilities). 

I had a seizure on Sunday afternoon and therefore spent the rest of the day in bed recovering. It’s now 5.17am on Monday morning and instead of sleeping, I’m wide awake because I spent the day sleeping off the post-seizure migraine.

A LOT has happened this weekend – too much for me to get into right now – to trigger that seizure, because of society’s ignorance, causing me to feel like I’m not wanted. So when I saw this quote, I just had to share:

Quite frankly, I do not give a damn what you think, or whether or not you believe I’m sick because “I don’t look it”. 

It’s not my job to fix your stupidity. 

But one day, you will need me to complete your picture. 

Posted in Blog

Sisters

When things began to fall apart in my career and my personal relationships, I decided that I wanted to seek out new friendships but I was mindful about what type of person I was looking for.

As a disabled person of colour, I’m a double negative minority and the people I was surrounding myself with were not getting that, which was why we were falling out.


I needed sisters of colour around me.


There were actually some sisters that I already knew and I just drew closer to them. They saw me hurting and didn’t even wait for me to come, they just reached out and rang; For example one of them, I hadn’t even seen or spoken to in seven years, reached out on social media after seeing everything I’d been through. When we finally spoke on the phone the other day it was like we’d been talking every day! We’re making plans to meet up soon and we’ve been keeping in touch on WhatsApp.

One sister, I call my little sister. She has been with me through thick and thin. We’ve known each other for years; she was there through the heartache with my family. We started Teacher Training together and we were supposed to make it to the finish line together. She stood by me while my childhood best friend disappeared and I continued to cheer her on regardless of my own situation. Now she’s an NQT (Newly Qualified Teacher) and we talk on the phone for hours about my woke-ness (she prayed for it!) most weekends and I listen to her tales of teaching teenagers (which I surprisingly don’t miss! LOL). She bought her first car this weekend and I am SO PROUD of her. I can’t drive, you’d think I’d be jel right? Heck no! She saved up for the car, bought it herself ❤️


And then there’s my Bumble Bestie; I just cannot believe I met a sister through a frickin’ app! And one I have so much in common with! Music, art, film, fashion, politics. We’re both in interracial relationships, therefore we both understand the struggles of becoming woke after falling in love and therefore the emotional battle of being constant educators; We both also had very similar traumatic childhoods, almost parallel. I do not think I could longer go a day without talking to her.


I’ve realised that in life, you really do need friends that you can connect with and relate to. It means so much for your self-concept. Before, I was so lonely that I would surround myself with anybody and I would call these people my best friends but they didn’t know me. They didn’t know when I was really happy, sad or really suffering.


Now I have friends I can go to when I’m feeling suicidal because I’ve had multiple focal onset seizures all afternoon and can’t get out of bed.

Or when my partner has accidentally said dumb shit about structural racism and thinks I’m overreacting to his comments.

Or when I’ve been able to go for a jog for the first time in a year.

All of my sisters are with me for all of my seasons. 


Posted in Blog

Epilepsy & Periods

I have a gynaecology appointment tomorrow and it’s suddenly dawned on me, I could find out I might have another condition.

I’ve suffered from seriously painful periods for years, but I’ve always just dealt with them. Within the Black community, as women we always do; many of us have severe heavy periods, that come with paralysing back pain and cramps, and because generations of women before us suffered we suffer too. Furthermore, as teenagers, visits to GPs are not even rewarded with a prescription for anything stronger than paracetamol. One of my best friends waited until her twenties to go and see a GP about her heavy periods and just suffered in silence through her teens.

As soon as I turned 18, I went on the contraceptive pill – not only because I had become sexually active, but also to help battle my period demon. And it worked – the combined pill made my periods lighter, however it made my depression worse. Thankfully, I was switched over to Cerazette, a progestogen-only pill, but this took years of negotiation with my GP, while simultaneous back-and-forthing regarding my depression and undiagnosed Epilepsy. Finally not having a period was a weight off my shoulders and when I went travelling, I changed over to an implant to ensure that I could continue to stay period free while on my travels.

The problem with Epilepsy is AEDs (anti-epileptic drugs) is that some of them conflict with contraceptives which contain hormones. Unfortunately, Keppra conflicted with my implant and I had to have it removed. I now have an IUD (non-hormone) coil, which means that I have horribly painful periods again – including sleepless nights. This provoked me to go back to the GP and demand a referral to gynaecology, because I could no longer live in agony. It took a lot of persuasion, but eventually I got a referral, however can you imagine a GP questioning a thirty year old (at the time I was still thirty) woman about her own body? And I don’t mean questioning in the sense of a tick box of symptoms, but gaslighting, to deter us from having to make these costly referrals.

There was an article in Black Ballad over the summer, however I can no longer find it regarding Black women and periods. We are made to suffer, because we’re perceived by white clinicians as strong and robust, therefore when we come into their rooms with our ailments, they don’t believe us, which has detrimental impacts upon our bodies as well as our mental health.

As somebody with Epilepsy, I shouldn’t have been gaslighted.

As somebody with Epilepsy, I shouldn’t have had to wait since FEBRUARY to have my gynaecological issues sorted out, when they have an impact on my seizures.

I could have another condition.

As a young Black woman, I shouldn’t be made to feel ashamed to ask for help to manage them.

XOXO

 

P.S. I actually thought this was really funny considering how much I hate periods:

Life on Your Period(Image source)

XOXO

Posted in Poetry

Grievance

Grieve for my former self

No tears every day

But grieve

Yes grieving

Every day

No more early mornings

Or “Ms Noel

Holocene walks

Teaching plans

But now so much time….

Tick… tock… tick… tick…

Miss running

To Kanye’s Workout Plan

Miss running

Feel it in my gut

Wish to run away

Grieving

For my consciousness

So vivid, so lucid

Sometimes it’s mine

Sometimes it’s where? 

Posted in Blog

Parental Rejection

http://www.spring.org.uk/2016/10/rejection-parent-personality.php

I came across this article tonight after reading on Twitter that a friend of mine had finally been rejected by her father. I say finally, because it’s been a slow, drawn out process. The rest of her family have turned their backs on her following her transition (she’s transgender) and at first, her father was the bridge of support, claimed to attempt to support, to reach out to the other party, etc., etc. But then she had fears that he was pulling away – we didn’t want to believe it, especially me, having experienced it myself, but he was acting super sketchy and no longer being as supportive as he once was. 

Then tonight, he was no longer taking her calls. He’d cut her off. 

HIS OWN DAUGHTER. 

What kind of parents have children, only to reject them? Let’s forget that we’re adults, we’re still your children. Professor Ronald, co-author of the study in the article, says that it doesn’t matter what culture, race or class you come from (surprisingly, considering we’re talking about Psychology here!) rejection from a parental figure has a significant effect upon the development of your personality. Rejected children tend to be more anxious and insecure; it also makes us aggressive and angry – who do we trust? And why should we trust people? What if you let us down? 

Rohner then goes on to say:

“Unlike physical pain, however, people can psychologically re-live the emotional pain of rejection over and over for years.”

According to the article, empirical research claims that the same parts of the brain activated for physical pain, are also activated for emotional pain. 

There are still days when I can’t breathe because the pain of separation is unbearable. 

I’m also finally coming to terms with being an orphan, because I never thought of my father rejecting me before. I’ve never had to deal with him walking out because I’ve always been so consumed with my mother’s failings, which the article discusses. 

Why do people even bother to have children? 

I’m sorry that this isn’t an uplifting post; I just can’t even…

I spent three days in bed with a post-stictal migraine, feeling like I’d had a stroke and not knowing what was going on, not knowing who I am, barely able to speak and the only thing I was sure of was that my parents didn’t love me. Because I get to relive that over and over again, especially when I’m too sick to escape my insecurities.  

Posted in Blog

Bitch, I Ain’t Fat!

If you remember on Thursday, the reason why I decided to treat myself to some new make up was because I had such an awful day. It began with the trolls on Twitter, followed by a New Patient Healthcheck with the Practice Nurse at my new GP Surgery.

I hate these appointments; I hate throwing shade at Practice Nurses because I’ve worked at GP Surgeries and I’ve worked, with some highly qualified and educated Nurses. However, the ones who work in the surgeries I’m always registered, at always seem to be dumb and prejudiced towards Epilepsy and people of colour.

My appointment was at 11am – I stupidly rolled out of bed and straight into the Surgery, without having anything to eat even though the week before, my partner had told me that he had had to wait over half an hour for his own appointment because the same nurse was running late. I ended up waiting over half an hour. The receptionist apologetically informed me that the nurse had struggled with some baby immunisations earlier in the morning.

The nurse finally called me almost forty minutes after my appointment time, offering no apology for running late. Then she saw a patient she knew and left me in her room to take this other patient to another room. I could hear them chatting, she was offering him a newspaper to make him more comfortable while he waited. I even heard her offering to make him a cup of tea! All while I was standing in her doorway, waiting for her. By this point I was furious and close to passing out.

The Nurse finally returned, still didn’t apologise but came in and sat straight down. I informed her that I she was running late, she had offered no apology, that I had Epilepsy, had not eaten and was extremely upset. Instead of apologising, she replied: “oh were you told to fast? You didn’t need to”. I then informed her that my medication makes it did difficult to wake in the mornings and that it also makes me sick, however that doesn’t excuse her lateness. She then told me that I could cancel (!) At this point, I’m ready to smack her, just apologise! And get on with the appointment. I had to explain to her that this was my second attempt to see her, as the last time I booked an appointment, I had a seizure and was rudely told by the receptionist that if I miss another New Patient Healthcheck I won’t be registered with the Surgery.

She then apologised.

Now, the reason why I keep making a big deal about her failure to apologise straightaway, is because when I told my partner (who is white, and so is the Nurse) what happened , he told me that the Nurse apologised straightaway and couldn’t apologise enough.

Yet I had to beg for mine. Because I’m Black, right?

She then took my height, weight and blood pressure.

She didn’t say anything about my weight, but I knew a lecture was coming…..

She told me that my blood pressure was high – no shit. We’ve just been arguing! However, she tried to convince me that I had high blood pressure because “people like you do”. And there we go, health professionals making assumptions. Instead of taking into account the fact that she had kept me waiting for over 30 minutes for an appointment, without any food and then provoked me into an argument, she instead diagnosed me as having a high blood pressure problem. She ordered me to come back and see her in two weeks time. I immediately refused and ordered her to read through my medical file, to which she will find that I have never had a high blood pressure issue.

Lion

(Image source)

Which of course was confirmed in my records.

As for my Epilepsy, she told me that she has a patient who also has Epilepsy and can talk themselves out of their seizures. I told her that was a lie, and I am under the care of a great team. She disregarded that, and recommended that I try Tai Chi for my seizures, “just like her patient who can talk herself out of her seizures”. 

As people of colour, we need to educate ourselves. This same dumb woman who is telling me this shit about my epilepsy, was also trying to diagnose me with a blood pressure condition I know for a fact that I don’t have and also told me that I have a weight problem.

I’m not skinny, but I’m not fucking obese either. Since I had to stop working and my seizures became worse, I’m not as active as I was and I’ve noticed a little weight gain around my middle, however I’m nowhere near as heavy as I was 2 years ago.

Last year I went to see a Psychiatrist, and when I told him I was a UK size 12-14, he looked at my like I was lying, and in the clinical letter, he actually wrote that I was “clearly lying.” This was actually one of the reasons why he also believed that I was lying about having Epilepsy and therefore diagnosed me as having Borderline Personality Disorder.

Anyway, the point I’m making is  *breath* as women of colour, especially in the U.K. we need to challenge Primary Care clinicians more, because they have no idea what the fuck they are talking about, especially when it comes to our health. The BMI calculator in particularly, was not created for us! I’ve weighed my boobs and each one weighs 1.5kg! Our body fat is distributed differently in comparison to White women, which the BMI calculator doesn’t take into account. We have booty and also a higher bone density: physiologically we are completely different to the White European “ideals” that the BMI calculator was created from. When you go on the NHS Choice website to check your BMI, all you see are White women telling you how to be like them. Eurocentric standards healthcare are one of the reasons why so many women of colour have eating disorders. It was one of the reasons why I spent most of adolescent years with an undiagnosed eating disorder.

I found this great article by Linda Lowen about Black BMI, which is a great starting point. I’m definitely going to stay healthy, but I’m also going to be doing my own research.

XOXO

 

Posted in Blog

Epilepsy: Self – Disgust

Last weekend my partner and I went to Windsor and Wiltshire, where we visited Stonehenge. While the museum was a fake (I’ll leave that for another post!), the stones were incredible. Absolutely beautiful.

Since coming home, I feel energised both physically and mentally. More aware of myself. I also haven’t had any seizures for over a week now, which is great.

Yesterday, I took part in a follow up psychological questionnaire about my feelings towards my epilepsy, and I realised that although I’d taken part in the initial questionnaire during my breakdown in the summer, admitting to feelings of disgust towards my condition, I’d very much avoided the notion of feeling disgusting. I’ve come a long way from Wiltshire (I was actually born there), and being back there with my partner was an incredibly proud moment, because I was able to go back to my birth town and I’d remembered the street name through my own efforts – without the help of anybody. I’m utilising this time away from employment to retrain my brain, particularly my memory, therefore being able to remember something from thirty years ago was definitely an achievement.

You Got It Dude

Yesterday, it was incredible to be able to speak to a Clinical Psychologist who also understood Epilepsy – something I’ve never experienced before: somebody who can sympathise with the feelings of dread before a seizure, the desperation to want to be alone afterwards (including the desire to want to separate yourself from your own body, even though you’ve just “left” it and returned, the constant feeling of betrayal you feel towards your body for being so weak and for failing you. I feign confidence because in my mind I realise that I’m becoming more confident as I become more “aware”, however within my body, I feel disconnected because it’s not my own.

I find my body disgusting. I wake up each morning not knowing what state I’m going to find it in and that disgusts me.

Unfortunately this Psychologist practices in Leicester, however she recognised that patients with Epilepsy are in desperate need of Psychotherapy, particularly because of the way we perceive ourselves through the eyes our condition.

She’s going to send me her data once she completes her write up, which will be interesting to read.

I used to blame myself for seizures, which I don’t do anymore, however up until as recently as a few weeks ago I was blaming myself, because if I wasn’t disgusting then I wouldn’t be a failure, and if I wasn’t a failure then I would be like everybody else. And if I was like everybody else, then I would be happy.

However, now I am happy and beautiful. I just have Epilepsy.

I came across this quote yesterday and felt that it was so apt to how I’ve been thinking about… thinking haha:

“We are shaped by our thoughts; we become what we think. When the mind is pure, joy follows like a shadow that never leaves.” – Gautama Buddha

XOXO