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 Poetry

Kiri

I smash my head against the table because there ain’t no pain worse than a white man taking my daughter away from me.

 

But still, you question my pain. When you wrongfully charge me with my daughter’s murder you spit judgement at me for showing nothing to you. I don’t care if you look like me. You’re still one of them – or so you think. This is how structural racism works in Britain.

Her neck, her neck, he put his hands around her beautiful long neck, because where he saw a black drug baby I saw a beautiful little Black princess.

 

My princess. So he took her from me.

 

Which is why I smash my head against the table because there ain’t no pain worse than a white man taking my daughter away from me.

 

White words can destroy a life just as much hands. She claimed she saw my car outside her house, so you charged me on her word. Now two lives are lost, and I’m forced to live out my days in incarceration endlessly grieving for my Black princess.

 

So I smash my head against the table because there ain’t no pain worse than a white man taking my daughter away from me.

 

Now there are riots outside of the police station, crying #nojusticenopeace

But the media has portrayed me as a thug with no fixed abode, so there will be no justice for me because there never is for faces like mine.

 

And who gets peace? Surely the hands that wrung my princess’s neck will forever tremble, not from guilt but insanity. Because whiteness knows no guilt when Black blood is shed.

And he will be scared of his own shadow because there’s more to fear in your own mind than justice catching up with you when you kill a black body.

 

Which is why I smash my head against the table because there ain’t no pain worse than a white man taking my daughter away from me.

 

 

 

 

Image taken from BT TV.

This piece was inspired by the events seen in the TV Drama show Kiri.

©The Wallflower Speaks Loudly, 2018
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 Poetry

Doctor Whiteface

You’ve diagnosed me as pain less

But I’ve told you that it hurts when you remove my heart.

I can feel the scorn in your hands of oppression around my neck.

When you pierce my eye with your surgeon’s scalpel,

so that I can’t see you remove my brother’s life from my side.

It hurts.

 

You say we can’t feel pain

But it hurts when you stare

And when you pretend we don’t exist.

When you call us stupid degenerates regardless of having more years of education than you all.

We can recite the law you constantly break upon our backs.

And it hurts too

And when you force us out of our jobs because of our melanin skin.

 

And yet you all continue to stare like spectators at a match.

It’s the FA cup final and you’re chomping at the bit

For some black blood.

 

But this is Britain, so your excitement is reserved.

And you expect us to keep a stiff upper lip, while denying us our British heritage to our faces.

All bets for black blood are “under the table”.

 

Like a mental institution Doctor Whiteface,

Your island really is full of crackers.

 

 

©The Wallflower Speaks Loudly, 2018

 

 

Posted in Poetry

Disappointment

Disappointment

A tasteless frozen pizza from a wood oven restaurant.

 

The only Black face in a sea of staring hostile pale faces who simultaneously ignore your presence.

Disappointment.

 

A ringtone on loud in the middle of your meditation.

A refund with no apology because white privilege makes mistakes and we all have to bear the cross.

 

Disappointment

Those two ticks to show you’ve been acknowledged but dismissed.

Message received loud and clear but in through one and out the other.

 

Disappointment

Waiting on you as you ride up that hill an hour late;

Watching as you finish that pointless youtube video instead of helping with the housework

I’ve become a Victorian housewife as I holler about the fucking cobwebs and dishes

 

Maybe my ailments will put me out of my misery like a Victorian orphan.

 

This is adulthood.

 

Constant fucking disappointment.

 

©The Wallflower Speaks Loudly, 2018