Posted in Blog

Medication Review (Update)

So I’m staying on Levetiracetam (Keppra)!

Which I am EXTREMELY happy about! Not adding anymore drugs to my current cocktail is great news.

This also means that I can continue seeing how I get on with combining my AEDs with Vitamin D for seizure control.

The consultant, was again trying to take the piss with me. When I told him how great I was going since coming of Zonisamide, in terms of my speech and writing, his response was:

Well it was definitely a side effect of the Zonisamide. If you’d told us about it sooner, we could’ve had you come off it sooner. 

The man is looking for a slap.

And it also reminds of Americanah (2014) by Chimamanda Ngozi Adichie. In it, Aunty Uju says: “These [white] people make you aggressive just to hold your dignity”. I feel like as a Black woman, I’m constantly provoked by white people to perform to their pre-held judgements of the aggressive Black woman stereotype. 

When I was sitting across from him, everything within me wanted to scream and yell at him, because he KNEW he was wrong and therefore I felt that he was provoking me. However, instead I calmly replied:

Well I did. You just chose not to listen. 

In front of two medical students.

You’re welcome.

I’ll be seeing them again in three months’ time. Unfortunately I had a seizure this afternoon, but my last one before that was ten days ago (both partial complex seizures). The heat can be a trigger, so I just need to make sure that I’m drinking enough water (I’ve become addicted to Fanta this year LOL, so it’s conflicting with my water intake).

XOXO

Posted in Blog, Mental Health

What Makes A Good Therapist?

I came to a bit of blows with my therapist this week, where during our session I felt that she accused me of being judgemental and bossy, which is not me at all.

We were talking about my mum; My mum and I are talking again. On Sunday she left me a heartfelt voicemail, apologising for having not been there for me when I was younger and for letting me down. So on Monday I called her and we had a heart-to-heart about our relationship. She’s asking me to forgive her, but my heart has been broken so many times by her that I’m reluctant to trust her. Plus she still has a lot of issues of her own to work through, which she will not care to admit to. In building a barrier for myself, I am protecting myself, because I’ve known my mother for almost 32 years now – I know what damage she can do to me. Also, we’ve always had a problem with communicating with each other, which causes me significant mental stress, and also triggers seizures, so I’ve decided to take charge, meaning that the relationship is on my terms. I believe in being honest and open, because it’s healthy.

This is all advice I also received from my tarot reader, Leona Nichole Black, who pretty much confirmed my gut instincts: before I’d seen her, I’d decided that if I was going to have a relationship with my mum, it wouldn’t be the same as it used to be, it would be on my terms and my tarot reading confirmed all of this for me, which you can read about here.

However, my therapist disagrees, and think that instead of judging my mother on her past mistakes, I should just learn to enjoy being in her presence and get to know her again.

But my stance is, why does there have to be an either or? Why can I not do both?

My therapist also accused me of being quite domineering, because of what I said about things being on my terms, so she asked me to role play, where she was my mum and I was me and we had a conversation about planning to meet up. However, during the role play, it became evident to her that when I say that I want things on my terms, what I mean is that I want open communication. Anybody who knows me in real life, knows that I’m not a controlling person!

So at the end of the session, I came away feeling shitty, because nobody likes to be called judgemental or controlling, least of all me. She did end the session by saying that she feels protective over me and doesn’t want to see me get hurt again, which is why I cannot understand why she cannot see that my approach is the best, if we’re both of the same opinion of protecting myself?

From what I’ve been learning in my MSc about therapists, I understood that a good therapist doesn’t give their opinion – particularly personal ones – about the patient, especially because the patient is the vulnerable one out of the two and will take it to heart…. This is regardless of the type of therapy it is that the therapist is practicing too. Even if the patient is causing harm to themselves, there are ways of conveying concern without expressing a personal opinion.  And this is not the first time that she’s done this either. I just sweep it under the carpet because she pays me so many compliments. This is also not the first therapist I’ve seen, who’s gotten a little too personal either (which you can read about here).

All of this are things I’m taking on board for my own personal learning, for when I eventually go into therapy myself.

Not insulting your patient is definitely a good starting point.

XOXO

Posted in Blog

Medication Review: Lacosamide vs. Pregabalin

Tomorrow I’m going to see my Epilepsy team and I have to decide between taking Lacosamide and Pregabalin (both of which are commonly used for focal/ partial complex seizures). The team haven’t told me that it’s my choice to make, but I’m doing it anyway!

So…

The common side effects of Lacosamide include:

 

  • Dizziness,
  • Spinning sensation,
  • Drowsiness,
  • Blurred/double vision,
  • Nausea,
  • Vomiting,
  • Constipation
  • Wind
  • Fatigue,
  • Loss of balance or impaired coordination,
  • Difficulty walking,
  • Shakiness (tremor),
  • Headache, or memory problems,
  • Depression,
  • Abnormal eye movements, and itching.

 

These side effects of Lacosamide are more common when you first start taking the drug and usually lessen as your body adjusts to the medication. Suicidal thoughts while taking Lacosamide are also common.

There are also rare but serious side effects of Lacosamide including:
fast/slow/irregular/pounding heartbeat, shortness of breath, severe dizziness, or fainting.

There have also been reports of hair loss, however only on high doses.

I found the information for Lacosamide on RxList and the Epilepsy Society website.

Now…

The common side effects of Pregabalin include:

 

  • Headaches,
  • Drowsiness,
  • Fatigue (tiredness),
  • Dry mouth (xerostomia),
  • Dizziness,
  • Diarrhoea,
  • Mood changes,
  • Edema (accumulation of fluid),
  • Abnormal gait (ataxia),
  • Tremor,
  • Difficulty concentrating.
  • Feeling sick,
  • Swollen hands, arms, legs and feet,
  • Blurred / double vision (diplopia),
  • For men, difficulties with getting an erection,
  • Weight gain – because pregabalin can make you feel hungry.

 


If you have diabetes, Pregabalin can upset your blood sugar control and sugar control can also be a trigger for seizures. 
The capsules also contain gelatine (I don’t eat meat).

Serious side effects include:
thoughts of harming or killing yourself – a small number of people taking Pregabalin have had suicidal thoughts that can happen after only a week of treatment, difficulties breathing, severe dizziness or pass out, problems going to the toilet, including blood in your pee, needing to pee more often, or constipation. 

I found the information for Pregabalin on the NHS website and Medicine Net.

Woo.  Now that’s all out of the way…..

So after all that, I’ve decided to go with the Lacosamide – the side effects are less extreme (to an extent!) and I don’t wanna put on weight again! I’ve only just managed to lose it all. Plus, I reckon the Lacosamide will be alright on a low dose…. I think it’s also a newer drug as well, so it’ll be interesting to compare it to these oldies I’ve been taking, and I’ll still be on Levetiracetam for my secondary grand mal seizures, but I’m going to reduce the dose slightly so that I’m not too drugged up!

I’ll let you know how it goes with the team tomorrow!

XOXO

Posted in Blog, Mental Health

David Lammy’s Article, Gangs, & A Scathing Review of My Childhood…

Reading David Lammy’s article in the Guardian today really hit home, not only drawing attention to how politically and culturally isolated Black youths are today because of our Government’s continued cognitive dissonance, but it also reminded me that this has been going on for years and years and years and no Government has every improved the situation for young people.

This excerpt especially resonated with me:

The first thing Lammy wants us to understand is the blameless ease with which a child who goes home to an empty council estate flat because his mum can’t afford childcare while she’s at work, can become a gang member. All it takes is a gift of new trainers, he says, for which in return the child is soon asked to carry a little package round the corner, and before long, the 12-year-old is earning more in one week than his parents make in a year.

I didn’t grow up on a council estate, however I did grow up in a single parent family and was responsible for looking after my sister while my mum had to work in full-time employment. Luckily for my mum I was a geek, but unfortunately my sister got mixed up with some bad people and did some bad things and I had to save her. We used to call them “pikeys” in my days. When she told me that she had a boyfriend, my antenna went up, but when her friends told me that he was in a gang of white pikeys, I went round to his house and told him to stay the fuck away from my sister. For some reason he listened. People just did in those days. I don’t think my sister has every appreciated the fact that she could’ve been dead if it wasn’t for me. And she soon admitted to me that he didn’t treat her well either. My mum still knows nothing of this… until now.

Parentification is an unfortunate generation cycle in Black culture, and I’ve spoken about this before on my blog which you can read here. Children are forced into adult roles within their families, mostly because one parent has walked out, forcing the older child to take on that parental role. This has a detrimental effect upon mental health, during adolescence and especially in adulthood. The worse thing is, as Black people we are never offered therapy (I will provide you with examples below). Usually the child is at shown some gratitude in older years from their parent or siblings, however I’ve never been shown any. I didn’t rebel until I was 17 – I snuck out a couple of times with some friends while my mum worked the night shift – my sister would have friends round so she wasn’t home alone, but other than that, I made sure I looked after my sister. I did most of the chores at home, because my mum made me, which I had to balance with homework, unlike my sister who wasn’t doing any chores or any homework because she wasn’t interested in pursuing further education like me and therefore didn’t see the point in home studying. I also had to balance this with Church, which we went to at least three times a week. All while hiding my father’s abuse. As a teenager, I had a lot on my plate.

Everybody on the outside of our family saw us as this tight, united trio of a mother and two daughters, but we were far from it. I had nobody to talk to and felt extremely isolated. It only got worse when I went to University.

At 24 when I went travelling and came to the Australia part of my trip, I suffered from aggressive, verbal racism from the locals. They would say stuff to my face and then laugh, as if I was supposed to be in on the joke. The next leg of my trip I planned to be New Zealand, but I just couldn’t face it, but I couldn’t afford to come home early. My only option was to call home and ask my mum for a loan to change my ticket so that I could come home early. I cried down the phone, begging for the loan, but I didn’t tell her about the racism, because I couldn’t. When I got home, she would retell the story about the phone call and laugh about how I cried, which I found an incredibly insensitive thing to do.

I sunk into a deep depression, fell in love with a drummer who used me for sex, became further depressed and so went to see the GP, who instead of referring me for counselling “told me to get over it” and then prescribed me anti-depressants. By now, I was drinking heavily so I just carried on to the point to excess, which the GP knew.

I got a job at a GP surgery, where at the Christmas party, the Practice Manager tried to sexually assault me, because I was off my face on drugs and alcohol and could take advantage and I had to call my sister and her boyfriend to come and pick me up. I think this is finally when the GP referred me for counselling. However, my sister was angry at me. She knew that I had been battling with the GP to receive proper help about my mental health, but not once had she offered to come and visit the GP with me, she just blamed me instead.

And the lack of care from the GP, this is because I’m Black. If I’d been a white girl with Blonde hair, screaming in agony, you bet your arse I would’ve been referred to see a Therapist at my very first GP appointment.

This happens to thousands of young Black girls and women today.

In my late twenties, I was finally diagnosed with Unstable Emotional Personality Disorder (formerly known as Borderline Personality Disorder) and the psychologist explained that all of the impulsive behaviour I had displayed in early twenties – the high and the low moods, the excessive drinking, the impulsive spending, the impulsive sex – was all because of this disorder. And now that I’m studying an MSc in Mental Health and Psychology, I’m finally able to research more about this condition because even though I’ve been diagnosed, I’m still not being treated. The NHS are still failing me as a Black woman today; I was recently rejected from the Personality Assessment Services for being too high-functioning, even though I struggle every day and I’m having to medicate myself.

And as for my family: after I was diagnosed with Epilepsy in 2014, my sister rejected me for being too much of a burden and still refuses to speak to me now. My cousin Dee recently said to me that she wishes that she’d had me as an older sister growing up and those words meant the world to me, and I do see her as a younger sister, even though we’ve only recently gotten back in touch. No request is too much.

My mother, who I recently got back in touch with, I’m not quite sure knows how to be a mother. She’s shown me no gratitude for the years of love I’ve shown. On Mother’s Day this year, she was supposed to call me and didn’t and offered no explanation for this. Her excuses for her constant failings are that nobody showed her how to be a mother, yet you’re doing a great job to your other daughter, just consistently failing me, so there must be a reason why?

She still hasn’t called and it’s because she expects me to be the parent, when I’m the child. And this is why I’m so thankful for the other adults in my life at the moment who allow me to be the child I finally deserve to be, because my childhood was stolen from me. My family are the dark clouds over my sunshine, they don’t build build me up like others around me do, they knock me down and it took me years of searching to realise that.

Furthermore, nobody showed me how to be a daughter, yet I’m doing it. My door is always open for my mum, when she decides that she wants to be one.

XOXO

Posted in Blog

Racial Segregation @Gigs

Tonight I went to see Sunflower Bean with my girlfriend at KOKO at Camden. I was apprehensive about it however, it turned out to be a pretty good gig!

Why the apprehension you ask? Because I’m a Black woman in a room full of white people, unprotected. The last gig I went to was to see Feeder at the O2 Brixton Academy, where I was attacked in the crowd and I definitely feel like it was racially provoked: I was in the mosh pit, the white people didn’t like seeing me there and attacked me. I’ve been in mosh pits before, most recently at a Wolf Alice gig at Alexandra Palace and I was fine. In fact, I had the time of my life. It always depends on the vibe of the crowd and this Feeder crowd was definitely aggressive. I ended up leaving the gig early, because I was too upset to stay and I was so anxious about being around white crowds I missed the next gig I was supposed to go to the following week.

Sometimes I wonder if there is an unwritten rule that as a Black woman, I’m supposed to be at the back at gigs, and then I’m safe. At Wolf Alice I was in the middle, so perhaps I was pushing my luck, but tonight I was at the back so everybody left me alone. In fact this was my view at one point:

Is that fair, just because of the colour of my skin? Even though I’ve paid the same amount as everybody else? And I noticed that the other Black people in the crowd were in the same position as me.

Is there an unwritten segregation law for gigs? I’m trying to think back to the gigs I went to when I was younger with my Indian friend and come to think of it, even then we were hassled quite aggressively because we were always at the front – at the time, we just joked that it was the white girls getting their knickers in a twist, because they wanted to be closer to the lead singer and we were in their path to daydreams of losing their virginities… but now I wonder if it was all racially motivated?

Sometimes I go to gigs and the only people of colour are the staff in the cloakroom, on security and on the bar, but just me in the crowd. Would you believe me if I said that it never even occurred to me until I became aware of my own Blackness?

But even as my culture changes and henceforth my taste in music, old influences still hold ties upon my heartstrings, even if they don’t give a shit about racism and Black lives.

Furthermore, racial microaggressions as well as racist aggressive culture itself, has only become more open and explicit in Britain over the years. Brexit was like a red flag for these racists; public spaces are no longer safe and a simple “please leave me alone” will now no longer suffice. The Feeder gig was proof of that.

I tagged Feeder in some tweets on a very active Twitter account, about what happened to me at their gig and they didn’t even respond. Rest assured, that relationship is over. And as much as I love live music, I’m starting to become weary about where I’m spending my Black pounds.


Posted in Blog

A Week in Wonderland

It’s been an energetic week!

Since I’ve been taking control of my mental health and Epilepsy, I’m beginning to feel more like me again, which I never believed would happen in a million years. I have more energy, which is astounding, because having spent a year planning my time around low energy levels, to suddenly being able to do more than one thing in a day, is just… unreal.

Did I tell you all that I’ve changed antidepressants? I demanded it. The old ones were killing me and nobody was helping me, so I contacted my GP after doing some research and asked to be put on Fluoxetine and I’ve been self-medicating (slowly increasing the dose myself).

I’ve also been reducing my Zonisamide and I’m currently still taking 750mg of Levitracetam, which the Epilepsy team want to take me off of, however I’ve been thinking A LOT about this and as they stop my tonic clonic seizures completely, plus my energy levels are currently great on this dose, I’m going to stay on this. My consultant is the type of guy who wants “a one drug for all seizures” type of fix, but I’m not a guinea pig – I’m happy to try a low dose of another drug and see what that does for my focal onset seizures, but I’m starting to realise now that low doses are the way forward. I remember a few years ago, when I was on double the dose of Keppra, and it turned me into a psycho and I almost lost my job. But when I cut the dose in half and was taking Oxcarbazepine, my mental health improved as did my energy levels (this is when I was running three times a week and cycling to and from work). Anyway, I have an appointment coming up. Again, I’ll be in control!

So anyhoooooooo, the weekend was Easter Bank Holiday, therefore I wanted to party. I found a Lesbian bar in Soho called “She Bar” – this was a my first time at a Lesbian bar… and I LOVED IT!!! My outfit was a little over the top – my girlfriend described it as a wedding dress:

 

LOL!

Perhaps I see it as a metaphor for moving into a new period of my life, a healthier, happier, energetic period. It was also freeing to be around other women like me, with no idiot men in the way trying it on and just having a little boogie.

On Wednesday, I went to my first meet up with the Lesbians of Colour Book Club. LOVED IT! I’ve always felt more of an affinity with older women: they don’t take bullshit and I don’t like to deal with bullshit, therefore my lasting friendships have always been with older women (my surrogate mum, my mentor from The Open Uni). So when I saw that the majority of the women in attendance were older women, my heart soared. The book of conversation was Sweetheart Sputnik by Japanese author Haruki Murakami. Awful book. A typical male author writing about women and their lesbian relationship:

Epic fail. However, the conversation as we savagely ripped it to shreds was intellectually stimulating and chucklesome. Afterwards, we went out for dinner and made plans to meet up next week for a social get-together, which I’m really looking forward to. I’ve also been listening to the Mostly Lit podcast, to gather some inspiration for books to recommend for reading, as everything I’m reading at the moment is pretty heavy (Black British History, Civil Rights, Mental Health, or Medical Apartheid… yep, pretty heavy!)

Then yesterday, I went to my first Yoga class in about two or three years. The school is called Mindful Movements and they’re based in the Islington Arts Factory. Yesterday evening was a dynamic candle light drop-in session, which I found through the “Meet Up” app (also how I found out about the Book Club actually); it was the candle light aspect that enticed me, regardless of the warning that although beginners were welcome, the session was pretty dynamic. And intense it was! Like I said, this was my first class in two or three years; I’ve just reclaimed my energy; Don’t forget that last year I was bedridden! However, I made it through the session and I am incredibly proud of myself. It was breathtakingly spiritual, which is one side of Yoga I always used to find uncomfortable, however as I engage more and more with spirituality, Buddhism and meditation (I’m actually going to my second meditation class next weekend, also found through the Meet Up app), it’s definitely something I’m embracing as part of an exercise regime. The featured image for this blog piece is a photo of myself and the session instructor Hana Saotome, who was so welcoming and encouraging! And I didn’t even get an uber home!

Other than that, I’ve been working on my MSc, arguing in the discussion forum. For some reason in this class, I seem to be the only person who believes that Freud is not only racist but sexist. In my last class, all of the women hated him, however in this class the women seem to think the sun shines out of his bum bum, even though he clearly hated women. One of the women in the Book Club asked me:

“Don’t you want to just do what you need to do, agree with everything the Professor says, get the grades and get out of there?”

I told her no way. I can’t do that. I’ve never been that kind of person, and I’m not about to change now. She admired me for that.

XOXO