Posted in Blog

Constantly Ill and Constantly Sick

Howdy! 

I’m sick again, twice now in as many months. Last time it was the flu and now it’s (thankfully just) a cold. 

When I was younger, I used to love winter; I’m a homebody who loves curling up on the sofa with a blanket to watch as many films as I can in one night. I also preferred the winter season to summer because it was a relief from the hayfever I’m tormented by in summer. However, it’s only in hindsight that I realise how little energy I’ve always had in winter, how my joints and muscles have always ached, how I’ve had constant migraines causing “weird episodes”. I’ve always had consecutive colds throughout the winter, but we (my family and I) just shrugged it off as my almost non-existent immune system failing as per usual. 

Since being diagnosed with epilepsy four and a half years ago and realising that the migraines and weird episodes were seizures, I’ve come to realise how difficult winter in particularly is for me. For example, when I say I’ve had two colds in two months, I’m not just talking about sniffles and sneezing for a few days and then back to normal health until the second one hit. The first bout was the flu which of course knocked me out completely but also negatively impacted my epilepsy; I had so many seizures I couldn’t leave my bed for two days. It takes me weeks to recover from episodes like this, so when I’m hit with another cold, I feel like I’m returning to war after a way too short respite.

Thankfully, with this second cold I haven’t had any seizures, which hopefully means that the increased dosage of Lacosamide from 100mg BD to 150mg BD must be working and I’ve also increased my anti-depressants because as well as seizures being seasonal, mental illness is too. With all of these drugs in my system however, I often wonder if standard cold remedies ever stand a chance to take affect? Because they hardly seem to work! So, this time, I’ve indulged in some herbal remedies from Holland and Barrett. On Tuesday, feeling sick of being sick, I visited the branch on Holloway Road on my way out of therapy; I spent a fortune, however two days later I’m feeling more human than I was two days ago, so clearly it’s working!

I bought some propolis and zinc syrup with manuka honey elixir (makes it sound like a potion doesn’t it! But it’s literally just a bit of flavouring), to take 2-4 times a day: This benefits your immune system and is great to take throughout the winter; “Pukka Vitalise” powder, containing a blend of nutrients including beetroot, bilberries and ginseng; and manuka honey 525+ MGO (which was half price as part of the special offer!). Manuka honey has antiviral, anti-inflammatory and antioxidant benefits.  It contains an extraordinary enzyme called methylglyoxal (MGO) and the higher the number, the more effective it is. This higher the MGO the higher the price tag too, which is why it was great that H&B were doing this deal! 

My little life savers! 

I’ve also been taking echinacea extract in its purest form; when your immune system is particularly at its lowest, this is great to take to give it the boost it needs. During the winter, I’m also prone to abscesses which you can take antibiotics for, but mine during the winter are recurring so I’m trying to find alternative remedies to take instead. Then after three days, you can switch back to drinking it in tea form. I also find that turmeric tea helps. 

I regularly take vitamin supplements for my muscles and joints too as well as to help with lethargy: Potassium, VitB12, VitC, VitD, and cod liver oil, and although I can see or feel the effects within myself in comparison to how I was before, unfortunately during the winter I find it extremely difficult to notice the benefits. I feel way older than my years physically during the winter, which of course impacts my mental health and well-being. 

The reason why I’m posting this, is not so that people will call me brave and feel sorry for me; it’s to raise awareness for adults like me who are in their “prime years” silently struggling through the winter because of chronic illness.

We are regularly forgotten.

Society often remembers how the cold affects babies and the elderly, but for people like me in our “prime years”, with a chronic illness, society takes for granted that the cold affects us too. We can’t jump out of bed in the mornings; sometimes we cannot go out too far because the longer into the day it gets, the colder it gets; we can’t go out as often as our peers because our bodies just won’t allow it and we’re not cancelling to be difficult or just because we don’t feel like it because it’s too cold. It’s that we cannot go out because it’s too cold for our bodies to cope; our bodies will just not allow it and sometimes it’s safer for us to stay in the warm instead. 

So please keep that in mind. 

Posted in Blog, Mental Health

Medication Update: Epilepsy AND Mental Health

A lot my fellow bloggers are taking part in the Epilepsy #BlogRelay this month and as always I’m late to the party! I did intend to participate every day, however I’ve been extremely unwell and even now I’m not feeling any better. Better late than never right!

I was also supposed to take part in #NaNoWriMo (National Novel Writing Month) but obviously that’s been put on the back-burner too.

Seizure control has taken a turn for the worse lately. I actually had two seizures this morning and I’ve been having multiple everyday since Sunday. I saw my epilepsy team today and we’ve agreed to increase my Lacosamide doses to see if that has any effect. As we know, seizures can also be affected by seasons; I just think that it’s a combination of the season change and being so under-the-weather, so I am hoping that the dose change will be effective over the winter and then if it works, perhaps I can decrease over the summer.

Speaking of season changes, I always used to laugh off my dip in mood during the winter months. I have dips over the course of the year, however over recent years I’ve definitely noticed my mental health becoming quite unbearable during the winter and in retrospect it’s been a recurring issue for a number of years which I’ve failed to address. I do recall a friend once mentioning SAD (Seasonal Affective Disorder), suggesting that I might be affected by that however I laughed it off. Then last month, my girlfriend and I went away on holiday to Mallorca and I literally felt rejuvenated by the sunshine, warmth and sense of happiness and freedom the sun brings. When we returned to the UK, I immediately felt overcome with a heavy sadness and oppression, which I initially brushed off as post-holiday blues. Until I began to find it more and more difficult to get out of bed. Then I was suddenly crying for hours for no apparent reason.

I was due for a GP visit anyway, as I’d been asked to book a medication review for my AEDs, however I decided to use the opportunity to hijack the spotlight from my epilepsy and shine it on my mental health. Come to think of it, I’ve never been called in for a review of anti-depressants yet I’ve been on-and-off them since I was 19 years old. Unless I go and visit a GP to discuss them using my own initiative, concern for my wellbeing on anti-depressants has always been a big fat zero. The annoying thing is that GPs know very little to nothing about AEDs, therefore these medication reviews are more of a tick box exercise than actual care and concern for my wellbeing in my opinion.

So, once I’d gone through the formalities of review questions, I swiftly steered the attention to my mental health. The GP was reluctant to discuss it, was actually visibly uncomfortable with talking about it (???) and when I asked if I could increase my dose of anti-depressants just for over the winter months, I was immediately dismissed. At first she advised that she was always hesitant to increase anti-depressants until we’d seen the full affect and particularly if nothing else has been tried. Fair enough. However, doesn’t relate to my situation because…

  • Firstly, I’ve been on Fluoxetine for a fucking year.
  • Secondly, I’m already in therapy (which is on my file), therefore am also relying on alternative therapies as well as pharmacotherapy (medication).
  • Thirdly, she then asked if I’d ever tried Talking Therapies – because it’s on my file that I’m seeing a private therapist, but nothing on the NHS has been offered – I said yes but not recently. She then moved on from the subject of therapy instead of asking any further questions! To me, this is an obscene disregard for duty of care and something I have experienced regularly when it comes to my mental health.

She then expressed her concerns about what effect the increase in Fluoxetine will do to my seizure-threshold. Thankfully, I know that this is nonsense, (which was confirmed by my consultant in today’s appointment!) but can you imagine if I wasn’t as clued up as I am. And this is the fundamental problem with co-morbidity: clinicians tend to focus on only one condition and tend to prefer to ignore the others. As my consultant rightly pointed out, many patients with epilepsy also battle mental health issues which then affects their epilepsy. If I can’t get out of bed in the morning because of mental health issues, I’m skipping meals which then guess what? Triggers seizures, so why wouldn’t you want to treat the mental health issues? It is so bizarre.

So after arguing my case with the GP, I won the battle. I’m increasing my Fluoxetine. With the recent increase in Lacosamide, this means I might be a bit zombie-like during the winter months, but if I’m a happy seizure-free zombie, then I ain’t going to complain!

It’s also amazing to have such an awesome specialist team by my side and I am forever thankful. My GP actually gave me a letter to pass onto them about the increase in Fluoxetine, with her concerns about seizure-threshold and my consultant refused to take it, after throwing a fit at how frustrating GPs are for constantly believing in AEDs myths and congratulating me for arguing my case.

Welcome to my world mate.

Do you have epilepsy or another chronic illness and find that your mental health and wellbeing is often ignored? I’d really love to hear your thoughts and experiences in the comments below.

XOXO

Posted in Blog, Mental Health

Focus

It’s been a minute since I’ve been able to update you! As I mentioned in Friday’s post, I was intending for this to be my first post since my hiatus, but of course shit happened which I had to talk about! Anyhoo, many apologies for my lack of writing! I’ve been caught up with assignments and trying to get healthy around that.

So where do I start??

I’ve had a hair cut!

New Profile Pic 2

And I fuckin’ LOVE IT! I’ve wanted to do it for years, but I’ve always been too scared. This is when I realised that I attached waaaay too much of my beauty and confidence to my hair, so I finally decided to have it cut before my birthday in July.

 

My yoga classes took a break over summer, so in the interim I’ve been going to the gym; I’ve found a great one local to me, part of the Energie Fitness chain. Membership is really cheap and you’re not bound to a contract either so you can cancel any time. I’ve always been a little bit petrified of gyms; full of super fit people, I often felt like as soon as I walked in, people would be staring in shock at how unfit I am (not caring that I haven’t always been like this), especially when I get on the crosstrainer LOL. But of course it’s not like that; everybody’’s in the zone, doing their own thaaang and I’ve actually become quite addicted to it! It’s not only great for physiology, it’s also great for mental well-being. Plus it gets me out of the house so I’m winning on all fronts.

 

My body is also getting to used to my new AEDs (anti-epileptic drugs), Lacosamide. So I’m only on 100mg twice a day at the moment, finally off Keppra (wooooooo). But, when I first started on Lacosaminde, I developed a strange side-effect of urinary incontinence. Imagine my horror at the age of 32, suddenly leaking and having to purchase incontinence pads! I’m not ashamed to admit that I did cry a little and the only advice my Epilepsy Nurse could give was go to the internet, while my GP advised me to go to the toilet more. The latter only helped with the fact that as well as leaking, I was always bursting to go. It didn’t help with the leaking in between go’s. However, it seems to have finally settled down… until my next dose increase I guess….

Other than that, my epilepsy seems to be responding to the medication. I’ve had four seizures in almost two months which is INCREDIBLE!

 

Don’t get stressed

Another piece of advice my GP gave me was “to not get stressed” in order to reduce the seizures; people do not seem to realise who fucking annoying it is to hear that, as if we look for stress. For fuck sake.

 

However the GP did give me some good advice in terms of what I focus my energy on. At first what she actually said was that I didn’t have a focus and when I challenged her on that considering it was only the first time we’d ever met, she then rephrased: be careful what you focus your energy on. With this in mind, on Tuesday I saw my therapist and she said something very similar. She noticed that I tend to focus a lot of my energy on what other people are thinking about me and what they’re doing, very futile things. Instead of doing this, what I should be doing is focusing on myself: my journey of self-discovery, and what I’m doing now, in the present (Gestalt therapy is great for this, focusing on the present, being in the present).

Guilt and shame

I also don’t give myself enough credit for what I’m doing or who I’ve become: I’m a highly intelligent and incredibly creative woman. When I put my mind to something, I do whatever it takes to get there and I think that sometimes I give the people around me more credit for that than myself. My therapist told me that she’s observed that I carry a lot of guilt and shame, which is why I don’t like admitting the positive things that I’ve accomplished. And I think she’s bang in with that observation considering the psychological abuse I was subjected to all of my life. As a child and adolescent, although I was ambitious I was also very submissive and scared to rock the boat because I would be second-guessed and put down, so I would bend and sway to the music of others. A lot of this was also in seeking approval and validation from the people around me, whether they be on social media or real life, be they white, black and my family in particular.

 

Furthermore, guilt and shame is generational: many Black women before me have been prohibited from speaking out, speaking up and drawing attention to themselves, for fear of being shamed or bringing shame to the people around them. They’ve been forced to retreat into themselves which is a behaviour they’ve passed onto us, their daughters and granddaughters.

 

Now I’m going out on my own, drawing a lot of attention to myself and although at times I’m soaring high, I also doubt myself and look down at the ground beneath me, looking for reassurance but also scaring myself shitless. When what I should be doing is focusing on what I am doing, not what is happening around me.

 

I felt like I needed to share this epiphany with you all, because I’ve been trialling this new mindset since my therapy session and although at times it’s incredibly difficult, it is also incredibly liberating. In a way, I had already started the process when I stopped making YouTube videos a few months ago; I was responding to every single negative comment especially and with all the negative I get on Twitter sometimes, I was really taking the opinions to heart, allowing them to beat myself up. When I first decided to stop, it was to protect my mental health, but now I realise it’s about me focusing on what’s important: me and what I’m doing. My videos were not only a critique on the institution and society; they were a celebration of the person that I’ve finally learnt to embrace. I’ve also learnt not to respond to everything on Twitter, because it’s not only taking the focus away from what I do on social media, it’s also taking my focus away from myself.

XOXO

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

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

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

Posted in Blog

Pioneer

Last night I was bullied out of a Facebook Epilepsy support group and I realised, if I really want to be a pioneer, I need to toughen up.

I joined this group last year when I felt I needed support, however I ended up using them very infrequently.

Some white people within the group didn’t like my last post. They didn’t read it. They didn’t read the studies. They find the fact that my pointing out that as a Black woman, with a different body, mind and brain and henceforth shouldn’t be treated under a healthcare system that is specifically created for only white bodies, minds and brains and is therefore killing me, makes me racist. They also aggressively bullied me for pointing out that vitamin D is linked to seizure control regardless of race and should be prescribed, and harassed me until I had to leave the group. The notifications were off the frickin’ hook, with messages containing capital letters (which my partner and I both found to be incredibly aggressive) – all because I wrote a bloody blog post! And they didn’t even read it! Because they’re too stupid!

This is what I’ve learnt about these types of racists: when you make them feel inadequate, they will stop at nothing to try to intimidate you. I made them feel ignorant, so they tried to do the same back in an aggressive manner, but I refused to rise to the bait. I just kept on telling them to read the science, which pissed them off even more.

But I soon had enough. I have to protect my mental health, and I’m two weeks’ seizure free (woo!)- speaking of which, we’re all epileptics in this group, who all know what stress does to each other and a gang of white epileptic people are trying to stress me out, just because I’m smart? Go read a fucking book you morons! I know my worth. And the ironic this is, these racists kept on saying that we weren’t different, yet they treated me with absolutely no regard, because they do not see me as a fellow Epileptic. Because I’m Black. Do you see?

I did have a cry, of course I did, because a) it hurts to be bullied and I’m human and b) it’s healthy to let it out. However, if I really am the only person speaking up about the racism in health, specifically Epilepsy – which is why I referred to myself as a pioneer at the beginning of this post – then I do need to toughen up because the road is only going to get bumpier.

I find it absolutely hilarious that white people find it so offensive for people of colour to point out the absence of our inclusivity… “oh you’re being racist”; by saying that we’re not being treated fairly by the law? To say that it’s time for there to be more representation in medical research? We exist, therefore we have every right to be represented in medical research.

Going off on a tanjent slightly, but I’m currently reading Americanah, by Chimamanada Ngozi Adichie and in one scene, the protagonist Ifemelu is sitting at a table with a copy of “Essence” magazine, a Black beauty magazine, which her boyfriend at the time, Curt, finds racist because it only contains Black models. She then takes him to a cafe where they look at numerous magazines, flip from cover-to-cover to count how many Black models they can find: in two thousand pages they find only three Black models. Curt finally understands the importance of Essence magazine, because prior to its existence there was nothing on the market in terms of representation for Black beauty.

At the moment, this is the problem we have in Epilepsy: White voices speaking for Black bodies and brains. How does this make sense, when you don’t understand how we work? 

XOXO

Posted in Blog

Seasonality in Epileptic Seizures

vitaminddisc

As you may or may not know, I have been fighting with my Epilepsy team to prove that there is a correlation between Vitamin D deficiency and seasonality in Epileptic seizures. Zsófia Clemens,, András Holló , Anna Kelemen , György Rásonyi , Dániel Fabó , Péter Halász, József Janszky, and Anna Szűcs in their 2013 study, reported a significant effect seasonal effect (p=0.026), which I presented to my Epilepsy team. In the study, patients kept a seizure diary and seizure numbers showed a significant seasonal pattern for Epileptic seizures with a peak in January and a nadir in August – very similar to my own. In fact, the highest numbers were during the three winter months – again similar to my own.

 

There also appears to be more direct evidence supporting the anti-convulsive effect of vitamin D. In fact, according to their pilot study in 2012, they reveal that vitamin D deficiency is known to be highly prevalent among epilepsy patients, which appears to be unknown to NHS England, as it appears to be unknown to my Epilepsy team.

In a comparison during a 90-day period before and after vitamin D3 treatment onset, median seizure reduction was 40%. Furthermore, reduction of seizure numbers was significant (p = 0.04). The conclusion of the study therefore, was that vitamin D has an anticonvulsant effect in support with antiepileptic drugs.

 

This study appears to suggest that NHS England is failing its Epilepsy patients. My Epilepsy team also told me that vitamin D deficiency does not cause seizures, however this pilot study appears to suggest otherwise. Therefore, if vitamin D was prescribed alongside anticonvulsant medication, imagine the significant impact this might have for the wellbeing of Epilepsy patients’ health in the UK?

 

What is also important to note is the final discussion:

 

“Our study highlights the potential importance of screening vitamin D levels in patients on antiepileptic therapy and starting supplementation in those with low levels.”

 

What does this this mean for Black people with Epilepsy?

 

As a Black woman with Epilepsy, my priority is always speaking out against racism in Epilepsy. The NHS guidelines state that 30 minutes of sunlight a day is sufficient for vitamin D intake – implicitly ignoring people of colour and those of us who may be chronically ill, or in bed recovering from seizures on a regular basis. Low vitamin D levels also cause fatigue, depression and weight gain – things that many women of colour in particular complain of, and white Clinicians stigmatise them for.

According to the Mental Health Foundation, people with a long-term illness or disease are at greater risk of a range of mental health problems such as depression, anxiety and PTSD (Mental Health Foundation, 2018). However, due to racism from white Clinicians, people of colour are rarely offered help such as counselling and talking therapies in comparison to their white counterparts. Depression is also a symptom of Epilepsy while simultaneously a side-effect of many anticonvulsants, therefore the negative implications of low levels of vitamin D will have a significant effect upon mood and quality of life for people of colour with Epilepsy.

What about outside of the doctor’s room? Well, all of this will have severe implications on the standard of living for people of colour: socioeconomically, Epilepsy affects level of wealth and job prospects, because employers are much less sympathetic towards us. We are seen as fakers when we are sick and aggressive when we try to stand up for ourselves.  In fact, we are seen as aggressive whether or not we are sick. This then affects our economic and political stability, as well as our safety in terms of which geographic locations we can reside in, which again circles back to mental health, freedom and quality of life.

So when people continue to ask, what does Epilepsy have to do with race? Everything.

And finally, my blood test result was 25 (the lowest is 24), which is severely low, proving that vitamin D should be prescribed to Black Epilepsy patients on the NHS, along with anticonvulsants. However, once my prescription of two-weeks’ worth of boosters has been taken, I will be left to self-medicate for vitamin D and add oily fish to my shopping trolley, in order to maintain my own seizure and mental health control, instead of relying upon NHS England to do that for me. Or at least help me with it.

 

References

Holló, A., Clemens, Z., Kamondi, A., Lakatos, P., & Szűcs, A. (2012). Correction of vitamin D deficiency improves seizure control in epilepsy: A pilot study. Epilepsy & Behavior, 24(1), 131-133. doi:10.1016/j.yebeh.2012.03.011

 

Zsófia Clemens, András Holló , Anna Kelemen, György Rásonyi, Dániel Fabó, Péter Halász, József Janszky, & Anna Szűcs1. (2013). Seasonality in Epileptic Seizures. Journal of Neurology and Translational Neuroscience. 1: 1016.

 

Mental Health Foundation. Mental Health Statistics: Physical Health Conditions

 

The Guardian. ‘The Lowest of the Stack’: Why Black Women Are Struggling With Mental Health

Posted in Blog, Mental Health

Learning to Self-Care and Share My Pain

On Saturday 24 February 2018, I attended a Mental Health and Healing day, organised by Guilaine Kinouani. I discovered her after I lost my job last year, and as a Black, female, highly-educated woman – educated in cultural psychology – she was the first person to validate my feelings of pain and anger towards the traumatic experiences of racism I had suffered during my Teacher Training and the detrimental impacts these had had upon my mental health and Epilepsy, as a Black woman in Britain. Guilaine specialises in radical therapy – specifically for recovering from the effects of racism. Her workshops are incredibly difficult to get onto! Because there are so many women like me suffering from the long-term impacts; there are people – especially white people, who expect me to be able to get over what has happened to me, however if I had been sexually assaulted, they wouldn’t be saying this to me and I expect the same empathy. A group of people ganged up on me, tortured me for almost a year – both physically (if you count my Epilepsy) and mentally, and then a month before I was due to qualify, made up reasons to have me suspended so that I couldn’t qualify, and I lost my job. All of this is because of the colour of my skin. All the while, I was gaslighted to the point of insanity, where I very nearly didn’t even believe my own self.

Even though I lost my job in May last year, I only stopped having nightmares about my employers a few months ago. I did not know that what I was suffering were real effects of trauma and oppression, until I discovered Guilaine on Twitter and her blog, which you can also read here. And this is also why it was so important for me to attend this SCAR4Black Women Self-Care event on 24/02. She’d been a huge part of my own self-care journey, therefore it was an honour to finally meet her in real life, but I also wanted to speak to other Black women – women I’d met on social media too.

The morning began with experiencing silence together, as Guilaine led us in a quick session of mindfulness. Now, although I’ve been to a meditation session before, this mindfulness session was different (I realise that I’m using these terms interchangeably here, but just bear with me), because we were a room full of vulnerable women, sharing slices of vulnerability with each other. I had never felt so connected while simultaneously naked with strangers before, unlike the meditation session I went to at the beginning of the month, and I believe that this is to do with the room containing only women and only Black women.

Healing Words

We then had spoken words by Hodan Yusuf, again, a woman I “know” from social media. She read the following poems: Generational Traumas, When Your Options Are Limited, I’m Not My Brother’s Keeper, Bring A Scoop of Yourself To My Table, My Brain & My Words, When My Heart When My Heart,

The Sentience of A Woman: 

I read both people and books

That quote as a fellow observer myself, as well as a Cancerian, stood out to me!

Hodan also gave us a debut of SCAR for Black Women Hashtag (Unfinished):

each time you remind yourself that you are human, is a destination/stop…

…who told us that Black women were the carers and not the cared for?

…Healing is not linear…

…I finally see me for who I am, for where I’ve come from and where I’m headed

Blow Up & Explode

I wish that more people know that no is a full sentence

This line for me, as a Black woman, really stood out.

Lullaby (beautifully sang by Hodan):

Don’t hush… you’ve been silenced for too long in an oppressive world… 

This line was the refrain from the poem, such a beautiful line, again for me as a Black woman who personally has just recently found her voice after being silenced for so long.

How Does the Law See Me? The Legal Visibility of Black Women, Intersectionality & the Law 

The next session was on Law, intersectionality and visibility, led by Kemi Labinjo, who I’d not met before. I think that this was the session that triggered my tonic seizure days afterwards (!), because it forced me to face up to the fact as a Black woman, the law will never protect me and I learnt the brutal way that equal opportunity is a myth. Social theorist Kimberlé Crenshaw reminds us that the law does not recognise intersectionality, so as a Queer, Disabled, Black Woman, I’m screwed in the world of employment. This hit me really hard. I already knew this, but when Kemi said to us:

Don’t think of of the law of being your saviour

… I went into a stupor, because Kemi specialises in discrimination law and sits on Employment Tribunal cases and she was still saying this to us. A room of Black women. And instead of imparting useless legal advice, she was advising us on what to do to protect ourselves mentally:

  • self-care
  • self-education
  • Implementation Intention, for approaching conversations about inequality at work

You have to be your own saviour. 

It was also incredible to meet women who had suffered the same/similar experiences to me, where some are too frightened to return to work. Like me. I also have my Epilepsy to contend with, however I have massive fears that I’m struggling with presently, and I’m dealing with those through private therapy because the NHS deemed me as too high-functioning; some women at this event weren’t even offered therapy – it’s disgusting.

You have to be your own saviour. 

Self-care, Religion & Spirituality

The next session was on Self-care, Religion & Spirituality, led by Samara Linton. I follow her on Twitter and I’ve also submitted a piece for her anthology on Black Mental Health: The Colour of Madness, which I’m hoping will make the final print!!! Samara is incredibly spiritual, grew up in a Christian Pentecostal home (as did I). She’s currently studying a PhD in Psychology, therefore she battles this internal turmoil between spirituality and religion. Her benefits for religion upon psychology are:

  1. Community and support
  2. Promotion of positive co-mentoring
  3. Promotion of positive well-being and there being somebody else in control at the helm (during my meltdowns, I can see the benefits!)

Her points for detrimental impacts upon psychology:

  1. Belief in a punitive god
  2. Negative encounters with peers/ leaders

However, prayer has given her a sense of practice and empowerment, teaching her that her voice matters. This is in fact, what identity through my colour has given me. Samara does identify that prayer, on the other hand has also been used to attack and belittle and degrade. This has been done over thousands of years to Black people, to disabled people, which is eventually why I had to severe my relationship with God.

When I was listening to Samara speaking about her relationship so romantically, part of me did wonder if I could possibly redefine a relationship with God?

Can I redefine religion? Punitivejust… can I redefine these words?

Can I redefine the pronouns?

Can I worship a white man

And the answer to all of these questions are… no. 

If you’re new to my blog (https://thewallflowerinwonderland.com/), then you won’t know that I was born and raised a Catholic, before my family then became born-again Pentecostal Christians, where we worshipped in Black-African churches. I then chose to worship in white-Evangelical Christian churches in my twenties. Then, before I started working for a Catholic school, I had a personal relationship with God, where I wasn’t worshipping anywhere at all. My point is, I’ve tried to redefine religion and I’ve tried to redefine “God”.

So although I respect those who continue in their faith, my answer is still no. I live a spiritual life, in tune with my surroundings and my mind. As a Christian, I was always drawn to Buddhism (it always felt like I was cheating), so it’s nice to just finally be living this way of life.

Lifting for Wellness & Healing: A Personal Testimony

This session was led by Andrea Corbett, who used to be a teacher – in fact, the Head of her Department, who then suffered a mental breakdown. She went to her GP for answers. Her GP gave her a doctors’ note and a prescription for antidepressants. She was signed off work for almost a year and was never referred for therapy. Andrea found her own therapy – changing her diet, exercising (both of which, have a profound effect upon mental health) and lifting weights.

This is not the first time I have heard a testimony from a Black woman who has gone to her GP about mental health issues and hasn’t been offered talking therapies and this is an issue with Black men in particular. Unfortunately Black people suffer racial biases when it comes to our healthcare. Racial stereotypes claim that we carry a higher pain threshold and Clinicians are more likely to diagnose Black patients with a mental health condition from the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), which is the product of white euro-centric symptoms. From this, we are diagnosed, prescribed antidepressants, rather than actually treated for symptoms, which is what talking therapies does. Thankfully, Andrea was able to find that exercise helped her mental health significantly and she never went back to teaching (I don’t blame her). She now coaches people and performs in professional body building competitions. She also recommends Five Ways to Wellbeing.

Self-compassion & Blackness Centred Self-Compassion

This session was led by the host Guiliane herself, who described self-kindness as a revolutionary act, which at first does sound hyperbolic. But when you think about the emotion of compassion, you need to be moved to act with empathy. Therefore, self-compassion is the action of taking away our own pain. However, as Black women, it is something we naturally do not do, or even think about. Even in our anger, we forget that we are feeling pain. In fact, in a room full of Black women we disassociated ourselves from the emotion of pain when talking about experiencing trauma and oppression. It was quite an ah-ha moment.

I remember when I lost my job and I was listening to Drake and Kendrick. I was so angry and in my head, I thought, “well I’m finally that angry Black woman they told me I was”. At first, I didn’t want to let the lyrics penetrate me because I didn’t want to let myself feel anything but anger, but I remember the night in the shower in our flat on Eden Grove, just off of Holloway Road, I finally decided to allow myself to feel pain and it was a different type of crying. To be self-compassionate, you need to notice when you feel pain and you also need to notice what it is doing to your body, because contrary to what Kendrick preaches (LOL), Black does crack on the inside, which is such a powerful statement because from a mental health aspect, we are decaying quicker than our white peers. Guilaine’s advice for the room was to find what brings you joy; What is going to keep you well, and practice self-care in being wise with your battles (you cannot fight everything), because:

Black joy is your liberation. 

Guilaine reminds us that not allowing ourselves as Black women to experience pain is cultural, as well as generational, because we are taught to be givers. But studies show that people who are kinder to themselves are less impulsive, have healthier relationships and are more successful.

Black Excellence Panel

The final part of the event was a panel session with the following participants:  Kiri Kankhwende, journalist, Marai Larasi, Black Feminist Activist Phyll Opoku-Gyimah, co-founder and Director of UK Black Pride (I worship this woman!), and Marsha Gosho-Oakes, a freelance writer, editor and consultant (& my new fave Black Feminist).

The panel were in agreement that Black excellence is about having the space to fail, community and accountability.

Someone in the room asked the panel to define success, and Marsha answered:

When you look around you, there is always somebody better than you. 

This is especially true when you suffer from mental health issues, which is why it’s so important to live your own life and to live your best life.

When the panel discussed excellence, they shattered my assumptions when they told us:

Excellence should not be something that we should aspire to.

Marsha added that excellence is a white standard and a white burden, which therefore doesn’t belong to us. I remember striving for excellence during my teacher training and it was a standard that I could never EVER achieve, because my employers and tutors were constantly moving the goal posts in order to dehumanise me. The panel then went on to suggest that the opposite of dehumanisation is not Black Excellence, but to set our own goals, which as a community we will then be held accountable to.

The day ended emotionally, with me hugging Guilaine and speaking one-to-one with Marsha about my family situation, because I have professional/ educational goals, which I also want to utilise to create a better care situation for my Grandmother, however due to generational barriers (my Uncles and Aunt) which are stopping this, she’s currently living in relational poverty and although my cousins and I are trying our utmost to overturn the situation, the older generation are blocking our efforts. Although I have the skills, I do not have the stamina like my cousins and this is where the issues lay. Last week, during therapy I had a tonic clonic seizure (my first one since May last year). Marsha’s words of advice reminded me that there are women of colour dropping out of Psychology due to ill health, when we need to be taking pains to preserve our own mental health.

I’m a postgraduate Mental Health and Psychology student; my own therapist is a Black woman and it is truly awesome to be able to share my darkest thoughts with a Black woman, to be able to make references to “Get Out” and she gets it! I want that for other women.  We need relatable relationships in therapy for other Black women. I’ve been to therapy before, however having been in therapy with white therapists, I’ve been forced to compartmentalise.

My uncles and aunt will be held accountable, however I need to show myself some compassion and as self-care I do not need to have these conversations with them anymore when they are harmful to me. I can still help my Grandmother from afar.

The Future

We did get homework! Which I’ve yet to complete… It’s an activity scheduling diary. However, I have downloaded the Calm app for future mindfulness sessions (which I’ve already used a few times) AND I have been actively trying to be a revolutionary joymaker for myself. When I lost my job in teaching, I also lost my joy for poetry. Now, I’m writing again and using all of the influences I gained from reading mama Maya Angelou and papa James Baldwin while I was grieving, to create brand new art.

The next #SCAR4WOC event is in April and I highly recommend it.