FROM PRE-DIAGNOSIS TO DISCHARGE
One thing that few people know about me, and one that others may wonder if I've pulled my hair back in a ponytail and an odd white S-shaped scar is showing through my hair, is that I used to suffer from a rare form of epilepsy. This post is in no way me saying I had it worse than everyone else, I know there are sufferers who are not as lucky as me to be 'cured'. But I think it's important to increase society's awareness and understanding of epilepsy as I think for how common an illness it is, it is still so underrepresented and spoken about. I've also seen too many flashing lights and epilepsy jokes in my time.
When I was about 9 and half years old, after months of experiencing "episodes" or "seizures" in the form of feeling nauseous which caused me to spit out any saliva I had in my mouth and zoning out for 5-10 minutes before regaining my awareness and having a fragmented memory of the past few minutes, I had my first fit. As I was young and my parents and I didn't know what was wrong with me, we called these little episodes "wobbles". I was in hospital for a couple of days (I can't remember exactly how long), before I was told that everyone is allowed one fit in their lifetime with no reason for concern.
After a couple more years of having up to five "wobbles" a day, which stopped me from attending the weekly swimming lessons at primary school, and being able to properly partake in any P.E. lessons or sports activities. (Probably explains why I have a strong dislike for any form of exercise now). I had another fit when I was 10 years old. This time round the doctors and paedeatric neurologists started to take my case a bit more seriously.
The next four years consisted of lots of drugs - including levetiracetam and oxcarbmazepine, EEGs, CT and MRI scans, memory tests, sleep analysis, video telemetry, and sodium amytal or WADA testing. The pills kept the fits at bay - I didn't have any more until I was deliberately completely weaned off of my meds during the video telemetry and had a series of fits overnight which I still don't remember to this day. However, despite taking four pills a day at one point, they didn't stop me from having "wobbles" every day or every few days. I remember being told that 10% of left-handed people are memory-dominant on the right side of their brain rather than the left. Tests revealed that I fell into that 10%.
It was a long road until I actually got my epilepsy diagnosis, and an even longer one to discover the cause. After being told I had a scarring on my brain that I'd probably had since birth, to eventually finding out I had a slow-growing tumour on the right side of my brain. The side that was more memory-dominant. I was lucky that it was a benign tumour.
Surgery was now my next option. I was fourteen when I had the operation so I'm coming up to my seven year anniversary in a couple of weeks. As my op was in December, I had two weeks before the Christmas break off school, and then the Christmas break, and then I sat my Science GCSE exam in the New Year and got a B. Not bad considering I'd just had major brain surgery just a month previously. After I sat the rest of my GCSEs in the summer, my consultant decided to start weaning me off of my medication for good - and I haven't had a fit or "wobble" since. I still had to have annual scans and follow-up consultations for the next decade just to be 100% sure all is okay and there was no regrowth.
Despite a small fluid leak causing the side of my head to swell up a couple weeks after surgery, I haven't experienced any other complications since. Except for the fact that that I can't open my mouth as wide as I could beforehand due to my jaw muscles having to be cut through during the operation. (Partly my fault as I didn't properly exercise my jaw afterwards in recovery).
Throughout all of this, I was never scared. I never once thought about 'what could happen to me?' I had a few 'why me?' moments but I didn't want to worsen my parents worrying by making the situation even more about myself than it already was. In fact, the only time I actually got upset was when I had a tiny patch of hair shaved off the day before surgery - typical girl.
Looking back now and when I really think about it all, I am so proud of where I am now. In addition to having a major op, my parents were separating and my grandad passed after battling cancer, and I've come out the other side. I passed my test at eighteen despite being told I wouldn't be able to drive until I was at least twenty-one and my license is now non-medical restricted. I'm in my third year at university despite having to have extra time on my GCSE exams and coursework. My memory is fully intact apart from the odd walking into a room and forgetting what I went in there for scenarios. I had a management role in a pub despite suffering with my mental health during my teen years; the majority of which I have now waved goodbye to and overcome.
But my biggest and proudest moment was in 2016 when I was discharged for good, no longer an outpatient, no longer an epileptic, and no more scans - a whole four and a half years early! And of course, all of this wouldn't have been possible with the amazing NHS. A service that we in the UK take for granted on a daily basis. I think I was mostly lucky to be born into a country with such a great health service, as I dread to think how much all these years of medication and scans would've cost in another country.
FROM PRE-DIAGNOSIS TO DISCHARGEOne thing that few people know about me, and one that others may wonder if I've pulled my hair back in a ponytail and an odd white S-shaped scar is showing through my hair, is that I used to suffer from a rare form of epilepsy. This post is in no way me saying I had it worse than everyone else, I know there are sufferers who are not as lucky as me to be 'cured'. But I think it's important to increase society's awareness and understanding of epilepsy as I think for how common an illness it is, it is still so underrepresented and spoken about. I've also seen too many flashing lights and epilepsy jokes in my time.
When I was about 9 and half years old, after months of experiencing "episodes" or "seizures" in the form of feeling nauseous which caused me to spit out any saliva I had in my mouth and zoning out for 5-10 minutes before regaining my awareness and having a fragmented memory of the past few minutes, I had my first fit. As I was young and my parents and I didn't know what was wrong with me, we called these little episodes "wobbles". I was in hospital for a couple of days (I can't remember exactly how long), before I was told that everyone is allowed one fit in their lifetime with no reason for concern.
After a couple more years of having up to five "wobbles" a day, which stopped me from attending the weekly swimming lessons at primary school, and being able to properly partake in any P.E. lessons or sports activities. (Probably explains why I have a strong dislike for any form of exercise now). I had another fit when I was 10 years old. This time round the doctors and paedeatric neurologists started to take my case a bit more seriously.
The next four years consisted of lots of drugs - including levetiracetam and oxcarbmazepine, EEGs, CT and MRI scans, memory tests, sleep analysis, video telemetry, and sodium amytal or WADA testing. The pills kept the fits at bay - I didn't have any more until I was deliberately completely weaned off of my meds during the video telemetry and had a series of fits overnight which I still don't remember to this day. However, despite taking four pills a day at one point, they didn't stop me from having "wobbles" every day or every few days. I remember being told that 10% of left-handed people are memory-dominant on the right side of their brain rather than the left. Tests revealed that I fell into that 10%.
It was a long road until I actually got my epilepsy diagnosis, and an even longer one to discover the cause. After being told I had a scarring on my brain that I'd probably had since birth, to eventually finding out I had a slow-growing tumour on the right side of my brain. The side that was more memory-dominant. I was lucky that it was a benign tumour.
Surgery was now my next option. I was fourteen when I had the operation so I'm coming up to my seven year anniversary in a couple of weeks. As my op was in December, I had two weeks before the Christmas break off school, and then the Christmas break, and then I sat my Science GCSE exam in the New Year and got a B. Not bad considering I'd just had major brain surgery just a month previously. After I sat the rest of my GCSEs in the summer, my consultant decided to start weaning me off of my medication for good - and I haven't had a fit or "wobble" since. I still had to have annual scans and follow-up consultations for the next decade just to be 100% sure all is okay and there was no regrowth.
Despite a small fluid leak causing the side of my head to swell up a couple weeks after surgery, I haven't experienced any other complications since. Except for the fact that that I can't open my mouth as wide as I could beforehand due to my jaw muscles having to be cut through during the operation. (Partly my fault as I didn't properly exercise my jaw afterwards in recovery).
Throughout all of this, I was never scared. I never once thought about 'what could happen to me?' I had a few 'why me?' moments but I didn't want to worsen my parents worrying by making the situation even more about myself than it already was. In fact, the only time I actually got upset was when I had a tiny patch of hair shaved off the day before surgery - typical girl.
Looking back now and when I really think about it all, I am so proud of where I am now. In addition to having a major op, my parents were separating and my grandad passed after battling cancer, and I've come out the other side. I passed my test at eighteen despite being told I wouldn't be able to drive until I was at least twenty-one and my license is now non-medical restricted. I'm in my third year at university despite having to have extra time on my GCSE exams and coursework. My memory is fully intact apart from the odd walking into a room and forgetting what I went in there for scenarios. I had a management role in a pub despite suffering with my mental health during my teen years; the majority of which I have now waved goodbye to and overcome.
But my biggest and proudest moment was in 2016 when I was discharged for good, no longer an outpatient, no longer an epileptic, and no more scans - a whole four and a half years early! And of course, all of this wouldn't have been possible with the amazing NHS. A service that we in the UK take for granted on a daily basis. I think I was mostly lucky to be born into a country with such a great health service, as I dread to think how much all these years of medication and scans would've cost in another country.
One thing that few people know about me, and one that others may wonder if I've pulled my hair back in a ponytail and an odd white S-shaped scar is showing through my hair, is that I used to suffer from a rare form of epilepsy. This post is in no way me saying I had it worse than everyone else, I know there are sufferers who are not as lucky as me to be 'cured'. But I think it's important to increase society's awareness and understanding of epilepsy as I think for how common an illness it is, it is still so underrepresented and spoken about. I've also seen too many flashing lights and epilepsy jokes in my time.
When I was about 9 and half years old, after months of experiencing "episodes" or "seizures" in the form of feeling nauseous which caused me to spit out any saliva I had in my mouth and zoning out for 5-10 minutes before regaining my awareness and having a fragmented memory of the past few minutes, I had my first fit. As I was young and my parents and I didn't know what was wrong with me, we called these little episodes "wobbles". I was in hospital for a couple of days (I can't remember exactly how long), before I was told that everyone is allowed one fit in their lifetime with no reason for concern.
After a couple more years of having up to five "wobbles" a day, which stopped me from attending the weekly swimming lessons at primary school, and being able to properly partake in any P.E. lessons or sports activities. (Probably explains why I have a strong dislike for any form of exercise now). I had another fit when I was 10 years old. This time round the doctors and paedeatric neurologists started to take my case a bit more seriously.
The next four years consisted of lots of drugs - including levetiracetam and oxcarbmazepine, EEGs, CT and MRI scans, memory tests, sleep analysis, video telemetry, and sodium amytal or WADA testing. The pills kept the fits at bay - I didn't have any more until I was deliberately completely weaned off of my meds during the video telemetry and had a series of fits overnight which I still don't remember to this day. However, despite taking four pills a day at one point, they didn't stop me from having "wobbles" every day or every few days. I remember being told that 10% of left-handed people are memory-dominant on the right side of their brain rather than the left. Tests revealed that I fell into that 10%.
It was a long road until I actually got my epilepsy diagnosis, and an even longer one to discover the cause. After being told I had a scarring on my brain that I'd probably had since birth, to eventually finding out I had a slow-growing tumour on the right side of my brain. The side that was more memory-dominant. I was lucky that it was a benign tumour.
Surgery was now my next option. I was fourteen when I had the operation so I'm coming up to my seven year anniversary in a couple of weeks. As my op was in December, I had two weeks before the Christmas break off school, and then the Christmas break, and then I sat my Science GCSE exam in the New Year and got a B. Not bad considering I'd just had major brain surgery just a month previously. After I sat the rest of my GCSEs in the summer, my consultant decided to start weaning me off of my medication for good - and I haven't had a fit or "wobble" since. I still had to have annual scans and follow-up consultations for the next decade just to be 100% sure all is okay and there was no regrowth.
Despite a small fluid leak causing the side of my head to swell up a couple weeks after surgery, I haven't experienced any other complications since. Except for the fact that that I can't open my mouth as wide as I could beforehand due to my jaw muscles having to be cut through during the operation. (Partly my fault as I didn't properly exercise my jaw afterwards in recovery).
Throughout all of this, I was never scared. I never once thought about 'what could happen to me?' I had a few 'why me?' moments but I didn't want to worsen my parents worrying by making the situation even more about myself than it already was. In fact, the only time I actually got upset was when I had a tiny patch of hair shaved off the day before surgery - typical girl.
Looking back now and when I really think about it all, I am so proud of where I am now. In addition to having a major op, my parents were separating and my grandad passed after battling cancer, and I've come out the other side. I passed my test at eighteen despite being told I wouldn't be able to drive until I was at least twenty-one and my license is now non-medical restricted. I'm in my third year at university despite having to have extra time on my GCSE exams and coursework. My memory is fully intact apart from the odd walking into a room and forgetting what I went in there for scenarios. I had a management role in a pub despite suffering with my mental health during my teen years; the majority of which I have now waved goodbye to and overcome.
But my biggest and proudest moment was in 2016 when I was discharged for good, no longer an outpatient, no longer an epileptic, and no more scans - a whole four and a half years early! And of course, all of this wouldn't have been possible with the amazing NHS. A service that we in the UK take for granted on a daily basis. I think I was mostly lucky to be born into a country with such a great health service, as I dread to think how much all these years of medication and scans would've cost in another country.
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