Posted in Blog

Zonegran: Day Three, Four, and Five #InternationalThankYouDay

Day three, four and FIVE done!

FIVE days without seizures… done!!!!

As you can tell by my use of exclamation marks tonight, my mood has picked up remarkably.

After my last post, I felt extremely naked; I had exposed some incredibly dark feelings to the world, and to the people I love who follow my blog.

However, the following morning I woke up feeling determined. It came out of the blue, considering how I’d been feeling. I had a GP appointment in the morning and many of you know that there was also a tube strike on Monday too. Remarkably there are no adjectives in the English language to describe the Pandemonium of a tube-less London! I was extremely late for the appointment and it took EVERYTHING within me to control my anxiety levels. But I did it! I hate to take a cab from North London to East London; at the beginning of the journey through the traffic, I’d wanted to throw up from the stress; my heart pounding. However I eventually managed to control my breathing and focus on the end goal.

I had to wait in the surgery, hoping that the GP would see me even though I’d arrived outside of the fifteen minute grace period… I could feel the acid bubbling within my stomach (that’s how some of my anxiety feels as it begins again). However, I controlled the rush. Thankfully the GP was able to squeeze me in for five minutes and he was able to quickly deal with my requests.

On the subject of the NHS, I have been incredibly blessed with an amazing GP which is rare. On the NHS.

Thankfully I also have an incredible Epilepsy Specialist Support Team.

However, this is where the gift ends with my care under the NHS.

Our health service is incredibly underfunded and understaffed. It took moving to the capital to finally receive the care I needed for my Epilepsy. If I was still living in Kent, only God knows where I would be.

Unfortunately, living in the capital does not change what kind of Mental Health treatment you receive.

Mental Health services have been infrequently mentioned in the media during the “reign” of the Conservatives, however recently British news and the government have finally begun to put the lack of Mental Health services available in this country, under the spotlight. Particularly this week.

On Monday I was extremely underwhelmed by Theresa May’s speech on our Mental Health services, however I am thankful that she is talking about it.

Last night, BBC News ran a special segment on how people like me are being forced to turn to A&E for help, due to lack of support within the Primary and Secondary Healthcare.

A year and a half ago, I contacted the Crisis Team when I wanted to commit suicide and I was collected by paramedics and sent to A&E. A&E was noisy, stressful, chaotic, and lonely.

Then last summer, after another breakdown, I was finally referred to secondary psychiatric care.

The service was awful.

In my triage appointment I was given a provisional mis-diagnosis of Bipolar Disorder. I was then dismissed, without any information, to await an appointment with a psychiatrist who then diagnosed me with Borderline Personality Disorder. He also told me that everything I was experiencing, including my epilepsy, was in my head. In the appointment, I made an admission to him (which is something I’d never done before) that when I tell people about my fears of having children, I use my epilepsy as the reason instead of my mental health issues, as it’s easier to explain to people without having to go into depth. Weeks later, at home, alone in my room I read his report to my GP: he said that I use my epilepsy in order to gain sympathy from others – something I had told him my family thought and which was one of the reasons why my sister in particular, had decided that she didn’t want anything to do with me anymore. In the consultation, have had  asked about my eating habits, which vary due to my mood. In the report, he said that I was “clearly overweight”. He hadn’t even weighed me. Neither had be discussed this concern with me face-to-face.

Having had issues with food in the past, imagine me reading the words “clearly overweight” while alone in my room. Furthermore, imagine me reading my personality being summed up, by a stranger, as a narcissist.

While alone in my room.

Needless to say, my GP and epilepsy specialist team were disgusted by the report and encouraged me in my decision to make an official complaint. However, I haven’t had the time. Or the energy.

The way I was treated, put me off Mental Health Care on the NHS almost completely. After spending so many years of begging people to diagnose my epilepsy, I was now being made to do the same for my state of mind? No way, I thought. I fucking refuse.

However, again, I’ve realised that for me medication alone is not enough, and unfortunately I cannot afford to go private for treatment. So for the working class patients like me, what other option is there?

It’s disgusting that Mental Health is given SUCH little regard in the eyes of our Government. Charities and Primary Care Trusts have very little funding and yet are expected to do so much. I’ve had amazing therapy through Primary Care, however with very little funding and staff, they can only offer short term support. For some, that’s enough. However, for most it seems, it’s not enough at all.

As I document this journey in my blog, I’m forever thankful to the people who have stood by me because I’ve put people through a lot of shit, because I’ve gone through a lot of shit.

And this is why I think at times I do want to carry on fighting and why on that Monday morning I woke up, determined to fight, determined to get better; most of the time it’s much too hard to do it for myself and so I try to do it for the people who are rooting for me.

And I’m going to stay hopeful that the Zonegran will continue to work, because Keppra has been hell and I don’t want to be under its grip anymore. Especially when it’s doing fuck all for me!

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Viva la Zonegran!

xoxo

Author:

I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

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