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

Book Review: My Recommendations [TW]

TRIGGER WARNING: This post contains discussions on marital abuse.

I’ve been reading A LOT lately, seeing as I’ve been on holiday plus having a break in between modules, giving me the head space I need for that time away from reality. I’ve actually been reading a lot of fiction lately too, which is unusual for me as I’ve always been a lover of nonfiction, but over the last year and a half I’ve been reading more black nonfiction. I’m passionate about my culture and learning more about my history especially witnessing the rise of racism and fascism seeing history repeat itself.

At the beginning of the month, I finally got to read Barracoon: The Story of the Last “Black Cargo”. by Zora Neale Hurston. Now, I say finally because it’s been on my bookshelf since it was released earlier this year and I genuinely haven’t had a chance to read it until now (I’m like a magpie; I buy books and then see others that distract me from my initial list of books to read or earlier purchases). This book is everything I wanted it to be: real, beautiful and heart-wrenching. This story took such a long time to be published not only because of the subject matter, but also because Hurston has written much of the story in Southern African-American dialect, as spoken by Cudjo. The story is a firsthand account of slavery and the formation of a new life in America post-slavery, therefore the dialect in my opinion is extremely relevant and effective to the storytelling element of the book. I can sympathise with the critics to extent though, as in the past, I used to find stories written in dialect extremely difficult to read (I still haven’t finished Trainspotting and started reading that while I was a teenager!) however, the more I read stories like this, the easier it becomes for me. It also felt like Cudjo was speaking to me, as opposed to me reading it, which is an incredible achievement by Hurston. I definitely recommend! 

I’ve read some amazing fiction books this year…

At the end of last month, I finished reading Everything Here Is Beautiful by Mira T. Lee, a story about a relationship between two sisters: Lucia, who suffers from a mental health condition and her older sister Miranda, who struggles to take care of Lucia and ensure that her sister is taking care of herself. The problem is Lucia finds it difficult to accept her condition and often prefers herself off medication; she also begins to resent her older sister who she perceives as restraining. The story ends tragically and is one that continues to live with you long after you’ve finished reading.

While on holiday last month, I read Halsey Street by Naima Costa, which is a beautiful novel about the relationship between mothers and daughters and what happens to a child when the mother leaves. The narrative mainly focuses on the effect of her mother walking out on the family has left on the protagonist, Penelope, who is a young black woman. Her mother’s absence shapes her character and the way she responds to life, by running away. The narrative of Marella, her mother very much reminds me of my own mother, who I often think resented being a mother and being the one who wasn’t able to walk out first, hence reading this left me with a lot of emotions and thoughts to deal with, which gave me some amazing material to work through in therapy! Seriously though, it was like a spiritual journey, working through the emotions both from a disengaged perspective through Penelope, whilst working through my own. 

Earlier in the season of Autumn, I read When I Hit You: Or, A Portrait of The Writer as a Young Wife by Mena Kandasamy, a tragic tale of a woman who falls into the perils of an abusive marriage after suffering from heartbreak inflicted by a former lover. Her husband physically abuses her and crushes her soul by taking away her connections from the outside world, which she relies on for her piece of mind and writing career; the more isolated she becomes, the more she tries to become the wife he desires, but she never seems to be able to achieve this. She also frequently blames herself for the abuse, which is something victims often do and reading about her pathetic husband and the ridiculous things he punishes her for, you as the reader are consumed by a desire to just jump into the book and save her. This feeling of being a saviour is heightened even more as you read about her parents, who trapped in culture struggle with coming to terms with the extent of the abuse and for a while, the protagonist is left alone to struggle. 

Lastly, When We Speak of Nothing by Olumide Poppola, was one of the first books I read set in London, making it extremely easy to escape into the narrative. Poppola tells a story about two young men, Karl and Abu, who in 2011 are growing up in the harsh realities of our capital city. These two boys are dealing with coming of age during the explosion of racial tensions in our capital city, family and rejection, displacement, and girls, whilst trying to keep their friendship intact. Again, this is a tale that lives on in you long after reading it. It’s full of familiarity, tension and tragedy. In fact, I think once I finished I just laid in bed for ages trying to process everything. So incredible. 

That’s it! I am now currently reading The Book of the Night Women by Marlon James, centred around the story of Lillith, born into slavery. So far I’m enjoying it and finding it gripping. It’s actually better than the only other novel by James that I’ve tried, A Brief History of Seven Killings (unfortunately I never finished it). I’ll update you all with a full review once I’ve finished!

Anyway, I hope you’ve enjoyed my first book review! I’d love to know your thoughts on any of the books I’ve mentioned and also if you have any great books you can recommend!

Happy reading!

XOXO

Posted in Blog

“Bad Nerves”

I’ve been talking A LOT about my mother during my last couple of therapy sessions. It’s not something that I enjoy doing – I’m trying to move on and stop thinking about her – but the only way to move on is to address the many issues we had and how these affected my childhood as well as me as a person now. 

My therapist is extremely good at encouraging me to address the issues my mother clearly had over the years, one of them being anxiety. My mother lived in a constant state of anxiety and fear,  and truly believed that if she only prayed harder, her anxiety would decrease… or even disappear; she would mentally punish herself for not praying enough or not saying the right prayers that would get rid of her constant state of fear. The Bible says that the only thing you should fear is God, so if she feared any other thing then she wasn’t being a “proper Christian”… in her eyes. 

I came across this earlier this week on Twitter: 

Firstly, this year as I’ve been learning more and more about my culture, it’s been liberating to realise that there are people like me who witnessed the unique things that I did as a child, for instance parents struggling with anxiety while refusing to seek medical help or correlating help with shame, and families becoming fragmented caused by generations of trauma never addressed. 

My mother would put her “bad nerves” down to having not slept properly, the causation of which could be for a number of unrelatable reasons: drinking coffee (which she very rarely drank), eating too late (which she rarely ever did), not having enough pillows on her bed causing her to be too uncomfortable to sleep, wearing too many layers in bed causing her to be too hot to sleep… I could go on. 

She also refused to take medication as she “didn’t believe” in it. In her eyes, no doctor was bigger than God. 

I also believe that she was too afraid to sleep because of the nightmares that would afflict her. She would have the most frightening nightmares, triggered by her PTSD, but she would refuse to seek help. My sister and I would beg her to reconsider her stance, but she refused, believing that one day God would finally release her from her prison of anxiety. 

As of yet, that day hasn’t come. 

In my culture, my generation and those after me have taken action to tackle our mental health issues, breaking what we call the “generational curse” handed to us by our parents and grandparents and great-grandparents and so on, however what of our older generations? Who should the burden fall to, for encouraging healthier mental health well-being? Many of them continue to stubbornly suffer in blind faith. I used to live in endless guilt, beating myself up for leaving my mother when I eventually moved out of the family home at the age of 28, but I had to for my own mental health… plus it was long overdue! Other than moving out for university, I’d waited to quite an old age to finally move out and as much as I hate comparing myself to peers, I was the last one out of my friendship circles to move out. 

I did also hope that moving out would mend my familial relationships and encourage my mother to follow in my footsteps in seeking therapeutic help instead of having me constantly on at her face-to-face, but unfortunately it completely destroyed our relationship, because my mother was still unwilling to admit that she needed medical help, perhaps even psychiatric. 

There are places for black women to go to, however they are few and far between. For instance, there was a a tweet recently advertising a black women’s support group at The Maya Centre, which apparently is the only psychotherapy support group for black women is the country. The only place where black women can go to talk about trauma as a black woman, is in London. Funding authorities do not believe that these services are needed either, which is also part of the problem: black women do not believe that they are deserving or entitled to these services and authorities do not believe that they are needed or necessary. 

It’s a catch-22. 

Posted in Blog

“Mama Can’t Raise No Man”

“Life in general is a test. And raising a son especially a black son in an area [environment] with hardly any tangible prospects or prominent male figures to look up to as role models is a test within itself. Not to mention the fact that the same area [environment] is known for low income, crime, police rivalry, inequality, broken homes, drugs, violence, and prostitution. The list goes on and will leave a young man with many unanswered questions about justice.” (from “Mama Can’t Raise No Man” by Robyn Travis)

 

I’ve recently begun volunteering and today I met the most amazing man.

We got into a great conversation about manhood and what it means to be a man, which is poignant considering I’ve just finished reading Mama Can’t Raise No Man by Robyn Travis, focusing very much on what it means to be a man and how a boy can learn to become a man.

Mama Can't Raise No Man
(Image source)

The guy I met today told me that he’d never had a father figure in his life and had struggled to find one. His primary role model was his mother and so he felt that any man he encountered later in his life looked at him as an effeminate man, not man enough. He eventually met his father later on in life, who was derogatory about his son’s man-status, or lack-thereof (he repeatedly referred to him a sissy); thankfully he stood up for himself even though he was hurting inside; he knew that him having not learnt how to be a man wasn’t his fault because the person who was supposed to be responsible for doing this had walked out on him during his formative years. This story is very much like Duane’s in Mama Can’t Raise No Man, whose father walked out on him when he was still a baby; his father refuses to take any responsibility for missing out on Duane’s childhood and failing to provide him with the teaching he needed to become a man. In fact, his father argues that his mother should’ve been the one to teach him everything he needed to become the man his father expects him to be… doesn’t really make sense does it? How can he be what his father wanted him to be without the influence of that father? I also recently wrote about absent fathers, failing to take responsibility for their roles to play in parenting sons a couple of weeks ago.

After reading this novel, although I thought so before, I really realised how hard it is to be a man in our society. My mother didn’t necessarily teach me how to be a woman, however I had many role models around me in the women who were part of our lives, to help me become the woman I am today. Although single mothers are amazing in everything that they do, they cannot entirely give their boys everything they require to be a man. As I was growing up and had questions about life in general or things I was seeing and hearing, I had women around me to ask who could offer the relevant perspective I needed for my enquiries. Speaking of which, over the weekend I checked out a recent BBCThree documentary called Finding Dad, which tells the story of Mim Shaikh who hasn’t seen his father since he was a baby (this is a great documentary by the way and a highly recommend it). He was raised by women – his mother up until a young age and then his maternal grandmother who took over when her daughter became too sick to look after Mim – and the people who hold the answers to who his father is, and shape him as a man, are women.

It is very clear that not having his father around, leaving so many unanswered questions, has a profound affect on Mim’s mental health; although he is highly functioning with a successful career, he feels that there is a giant piece of him missing from his identity causing a great unrest within him, which is also why we must take men’s mental health so seriously. Who can young boys talk to when they don’t have men around them to confide in? Who can we blame when they go out seeking role models in the wrong people? When I used to teach, I was extremely protective of my boys and would always ensure that I was available to them, but I was also very much aware that I was a woman to them and could never be the complete answer that they needed.

The man I met today said that as a young boy he sought a role model in the wrong type of man, which nearly killed him as he was lead down a dangerous path.

Who is ensuring that this history doesn’t repeat itself in younger generations?

XOXO

 

Posted in Blog

“Hope You Get Better Soon”

Get-well-soon
Image source 

It’s funny how whenever I have a seizure most people will respond with:

hope you get better soon.

Although I appreciate the sentiment behind it, I feel like there’s so much to unpack in that statement; what does “getting better” even mean? To me, when you have a chronic illness there is no “getting better” (in the way society expects you to, such as able, fit, full health); it’s not like having a cold, you take a few drugs, drink some Lemsip and in a few days you’re back to what society deems as normal, “better” and back to full health again.

There’s also no certainty that my seizures will become controlled under medication and even if they do, I’ll be on medication for the rest of my life. Is that normal? Is that feeling better, considering the side-effects we experience while on medication?

And what about mental health? Again, when you have mental ill-health, can you ever get back to “normal”? You can restore your mental wellbeing, however along with the stigma of mental ill-health and diagnosis, along with what particular disorder you might have – such as schizophrenia, you might never be deemed normal by society again?

At times I question the sincerity behind the phrase “hope you get better soon”. If it’s a really good friend or a supporting family member, who understands your condition then they just might want you to recover from the seizure and be able to function a little bit better. But others can use the phrase to be dismissive of your condition, especially when you’ve told them that you’ve had a seizure and instead of asking how you’re feeling, they just respond with “hope you get better soon”. See what I mean?

Just a thought.

Sometimes we need to pay attention to the words we’re using and how they might be construed by the person hearing them.

XOXO

Posted in Blog, Mental Health

Why Doesn’t Anyone Check In? Pt. 2

As I was sobbing to my girlfriend on Wednesday night, it became unclear what I was most upset about: my ailing health, or my loneliness.

As I mentioned in my previous post, people perceive me as somebody who can look after themselves so they forget to check in on me. In fact, I think that my girlfriend is now the only person who has seen me ugly cry, and at my lowest points. But that’s probably because we live together. Even then, sometimes she forgets that I’m not always good at taking care of myself and need a little help.

As I mentioned in the previous post, I’m the kind of person who checks in on people without needing to be asked. I just fucking care so hard about the people I love.

As a blogger, I am aware that I’m very adept at creating the allusion that I can look after myself, that I’m strong and determined and I think that I’m also probably good at throwing this perception of myself into real life settings. Upon reflection, at times, I can be incredibly dishonest when people ask if I’m ok. Only a very small handful of my friends can instantly tell when I’m lying. This is not because I expect people to be psychic, or play “guess how I’m really feeling”; I think a lot of it comes from pride and not wanting to be the sick girl. There is so much stigma around being sick, particularly within communities and although I’m an advocate for mental health issues and epilepsy awareness, sometimes I’m just sick of battling the stigma especially from people I know. I see the eye rolls and the awkward checking-of-the-time to get out of a conversation with me. And it’s not like I’m constantly going on about my health; if I’m bringing it up, it’s because I’m feeling particularly shitty and am desperately reaching out, but I rarely find a hand to grasp while I’m reaching leaving me waving into empty air.

I can also be surrounded by people but feel incredibly lonely. When I’m around able-bodied people, I feel like I can’t really open up about my disabilities without bringing a black cloud to the gathering; when I’m around white people, I’m forced to reserve my true feelings of discomfort as they ignore incidents of racism, because I don’t want to be accused of steering the conversation “back to me” or playing the all-allusive “race card”. In fact, around particular people, I’m starting to feel like the minstrel again, where I’m only tolerated when I perform the role of the joker or happy girl. I was talking this through to my therapist, who responded that she felt like I was in bondage like a slave, who wasn’t allowed to open her mouth unless given permission, which I completely agree with.

I recently quoted this on Twitter and I’ll say it again here: last week on Celebs Go Dating (we all know that I’m a slut for reality TV), Chloe Simms said:

I’m too tired to give a shit about anybody else right now.

For me, this was such a MOOD!

Around certain people, I do feel that I care too much about what they think, how they might react; basically I’m not myself around these people. Fortunately these are not people I invest a lot of time in, but it’s still time which is energy. And now I’m too tired to give a shit.

This has given me a lot to think about! And I hope it resonates with some of you too about looking after yourself when the people around you might be failing in some aspects. Please feel free to share your thoughts in the comments.

XOXO

Posted in Blog, Mental Health

Why Doesn’t Anyone Check In? Pt. 1

As I mentioned in my last post, I’ve been really struggling with my mental health recently, as well as battling an increase in seizures.

I found a draft post that I starting writing weeks ago and never finished, about sometimes feeling like a “Billy No Mates”. Some people put this down to age: once you start reaching your late-twenties/early thirties, existing friendships dwindle and it becomes more difficult to ignite new friendships (don’t we miss the days when you could just walk up to somebody and ask them to be your best friend? LOL). When you have a chronic health condition too, nobody really wants to be friends with you, when you’re the one who’s always cancelling plans at the last minute and aren’t really that much fun anymore.

However, although I can relate to both of these, I also think that I give off an impression that I can look after myself, so people don’t think to check in on me. I was discussing this in my most recent therapy session: I’m the kind of person who, if I know you’re going through a shit time, I’m going to check in on you. You need to know that you’re loved and I need to know that you’re still alive. But I rarely, if ever if I’m honest, receive the same back. Don’t get it twisted, I don’t give to receive, but when I’m hanging off the edge of cliff, I can’t be expected to save my bloody self really, can I?

In yesterday’s session I brought up my mother and my anger that she fails to check in on me, even though we’re not talking and this is something she actually failed to do, even when we were apparently close and was something I desperately needed particularly after my epilepsy diagnosis but I never got. At least my sister would check in to make sure I’d eaten, but my mother… nothing. If she heard from me, then that would be her confirmation that I was still alive.

Whenever I confronted her about this, her argument was that she knew that God was taking care of me, to which my response was, so does God relinquish your responsibilities as a mother? Sometimes, my therapist and I do role-playing in our sessions, where she will play the role of the person I have the conflict with, while I – as myself – take this opportunity to not only confront that person but simultaneously hear their point-of-view of the conflict between us. It’s also a great way of bringing past conflicts into the present and I always find this technique extremely enlightening. It went as follows:

Me: why don’t check in on me? It’s like you don’t seem to care about me.

Mother: Well,  you’ve always been really good at looking after yourself… and I just don’t want to look after anymore you because I’m tired of having to do it. I’ve done enough.

I often think that my mother was never prepared for motherhood and then being thrown into single-parenthood was just too much for her.

I often think that she never wanted to be a mother – particularly to me; it was a role forced upon her by her environment.

I often think that she resented and blamed me for putting her into those situations.

I often think that while I was the practice child, my sister who followed me was the one who received everything my mother could never give me.

Although my mother thinks that she took care of me, our perceptions of my childhood are complete polar opposites: I was consistently lonely and emotionally, psychologically and physically (denial of treatment for my epilepsy) neglected, forcing me into extreme survival mode, taking on the role of the parent for myself.

I’ve been reading a lot recently too, which I’ll get into more in a future post, but I just wanted to reference Halsey Street by Naima Coster, because without wanting to give too much away, like me the female protagonist is often perceived as this tough young woman who can look after herself, when inside she’s still the broken child crying out to be loved and like her mother who made sure that she was one to walk out on her family, mine always wanted to be the one who walked out on us instead of our father.

(Header image source) 

Have you been forced into looking after yourself and often find it difficult to balance that kind of self care with showing a side that people can reach out to when you need it? If so, I’d love to know how you deal with it in the comments.

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

“Show Up For Him”

Prancing Elites

(Image source: Twitter)

I’ve been watching The Prancing Elites Project on All4. It’s my latest obsession; I watched the entire first season while dying on the sofa last night (I currently have the flu. Boo).

In Season 2 Episode 5, Kentrell finds out that his father has been diagnosed with cancer. His father walked out on him and his mum when Kentrell was just 8 years old and hasn’t shown much of an interest in his son since. Kentrell finds it infuriating that his father now wants him to show up for him when he never showed up for his son; he never went to Kentrell’s graduation from high school or dancing academy. As Kentrell is airing these frustrations to his mum, she says to him:

maybe you should be the bigger person and show up for him

Now, as much as I get that this was said with the best intentions, I’m constantly stressing about why children are expected to “show up” for their parents; why are we the ones who are expected to be the adults in familial relationships? Why are we the ones who have to show our parents how to behave?

I haven’t heard from my mother since I told her not to talk to me until she decides that she wants to be a proper mother for me, which was earlier this year, and considering that she’s now in her sixties and her health isn’t great anyway, I often wonder what I will do in the situation where her health deteriorates, or when she eventually passes away. What will I do? I don’t see us reconciling ever again (and that’s not me being pessimistic, that’s me being realistic that she can never give me what I need as her daughter and I deserve better than what she has to offer). I honestly do not know what I will do when the situation arises, but I no longer let this concern keep me up at night.

I don’t know what Kentrell is going to do yet about his father. If I was in his shoes, I’d probably tell him to fuck off and carry on living the life I’ve been living  without him.

 

UPDATE: 

A few episodes later, Kentrell meets up with his father. It’s actually quite a distressing scene: his father at first, refuses to acknowledge his wrongs and plays the victim. Yes he has cancer, however he blames his children for the fact that he has to go through it alone and refuses to accept responsibility. I think he even wails that none of his ten(?) children want anything to do with him and blames THEM for that and not himself. At one point, he even walks out when his son questions him about his past violence. To be fair, he does come back, but then again instead of being willing to answer his son’s questions, he asks for the past to be left in the past and once he receives that confirmation, he THEN says sorry. This leaving shit in the past and requesting forgiveness really irks me because I feel like this is the kind of psychologically manipulative shit that parents like this pull when they want to continue to play the victim.

Another member of the dance group, Jerel also happens to be going through a similar problematic reconciliation with his estranged father. After Jerel came out as gay as an adolescent, his father abused him both psychologically and physically – even threatening to kill him for being gay and holding a gun to his head. After many years of not speaking, his father reaches out to him and Jerel decides that they should meet up to talk things through. Unfortunately, his father stands him up and Jerel calls his mum in tears who then rushes to console him. I stan his mum forever because as she comforts him, she reminds him that HE is the child and is not responsible for showing up for his father. I wish that more parents were as aware of the roles of parent and child as Jerel’s mum clearly is.

 

XOXO

Posted in Blog, Short Stories

The Label [Flash Fiction]

She turned the label over in her hands; the white background illuminated the handwritten dark font printed on its face. It had been attached to her bag, perhaps as she was walking through the dense corridors of school. Focussed on getting from one classroom to another with as much speed as her legs could carry her five-foot four-inch body, she guessed she hadn’t noticed anybody pinning the label onto her backpack.

She turned it back over as tears began to run down her cherub cheeks, then into her lap. As she was hiding in the haven of the girls’ toilets, nobody could hear her crying out in pain; the knife of humiliation stabbed her in the chest as her heart broke for the girl she would never be. She would never be like the other girls: slim with long legs and pert bums perfect for their skinny jeans; small, delicate chests, perfectly made for their boyfriend’s t-shirts. As she sobbed even harder, the stale smell of the school toilet became drowned out by the grief of a first romance she had not been privy to. Her heavy chest heaved over her round stomach; as she hugged her chest closer to her, she imagined herself in the arms of another she had not yet had; bitter tears kissed her virgin lips.

She turned the label back around, to read the cruel words one final time: “lard arse”. As she meditated on those words, her devastation transformed into anger; her thoughts of helplessness became foundations for a plan of action.

A plan for revenge.

 

© Cece Alex Noel, 2018