Well I didn’t know if I wanted to write about the last few weeks but I’ve been encouraged to do so and hey if it helps one person in a similar situation or raises a bit of awareness then it will be worth it.
Only ten days prior I had written about how close I was to being one year seizure free and getting my driving licence back; the ultimate goal! I don’t remember anything about the day the seizure happened, not even the hours leading up to it. I was in the flat on my own when I had the seizure, fortunately my best friend was coming round early afternoon to visit otherwise the aftermath could have been completely different.
I don’t like to hear what’s happened and what goes on in the hospital when I’m not with it. I ask very little questions but this is the one I’ve probably found out the most about. Thanks to the quick thinking and fast actions of my best friend and boyfriend (to whom I will be forever grateful) the paramedics got there and were able to take me to hospital quickly. After being rang through as a priority call and taken straight into resus, I think this is where me forcing Jonny to watch countless episodes of 24 hours in A and E caused him to panic, as they weren’t allowed in and were made to wait in the relatives room. I didn’t want to know much past this, as I am always embarrassed of what happens when I don’t have a clue what is going on.
Only ten days prior I had written about how close I was to being one year seizure free and getting my driving licence back; the ultimate goal! I don’t remember anything about the day the seizure happened, not even the hours leading up to it. I was in the flat on my own when I had the seizure, fortunately my best friend was coming round early afternoon to visit otherwise the aftermath could have been completely different.
I don’t like to hear what’s happened and what goes on in the hospital when I’m not with it. I ask very little questions but this is the one I’ve probably found out the most about. Thanks to the quick thinking and fast actions of my best friend and boyfriend (to whom I will be forever grateful) the paramedics got there and were able to take me to hospital quickly. After being rang through as a priority call and taken straight into resus, I think this is where me forcing Jonny to watch countless episodes of 24 hours in A and E caused him to panic, as they weren’t allowed in and were made to wait in the relatives room. I didn’t want to know much past this, as I am always embarrassed of what happens when I don’t have a clue what is going on.
After giving myself concussion, the moment I first remember is Friday morning waking up to someone putting another cannula in my hand. As you can imagine this is pretty scary when you already have lines coming out of you, ECG monitor and oxygen mask on and someone is sticking a needle into you, when the last thing I remember is watching Great British Bake Off before going to bed on Wednesday and it is now Friday morning. I couldn’t see out of my right eye and my first question “not a seizure?” and unfortunately the answer was yes. I was gutted!
All I wanted to do was sleep, after another hour or so a lovely nurse came and helped me to the bathroom. Anyone that has had a seizure knows the feeling that your muscles feel like they’ve gone through a marathon, but this one I really felt battered and bruised with a mouth cut to shreds and still bleeding. The nurse was quick to point out all the bruises I had gained during my little adventure, plus a few broken bones! Piecing pictures together we think I fell backwards onto the toilet on my shoulder, then smashing my face into the wall, hitting arms and legs into walls, cupboards and doors. As you can imagine a few cm either side could have ended up in a lot worse injuries.
As many know I also suffer a bleeding disorder, therefore due to my injuries I had to go and see the haematology team in a different hospital prior to going home and sleep. I have a platelet function disorder which means my platelets don’t work like they should and therefore due to my injuries I needed a platelet transfusion to help stop the bleeding, otherwise I would turn into one big bruise! I am very thankful to everyone that donates blood or platelets, as they help all kinds of people in all different situations. It really is a great gift, so please donate if you can. I had to get a further platelet transfusion the following week to continue to aid the healing.
I’m really lucky for all the family and friends I have for the lovely messages, visits and thoughtful gifts to keep me occupied over the coming days I received.
Over the last few weeks I have spent lot of time in and out of hospitals and doctors’ practices mainly due to the injuries from the seizure and a few complications. The one thing I have realised is when you go into a room with two black eyes, an air cast boot and crutches everyone turns to stare, this mainly happens in the hospital or GP practice! Sometimes this is a brief look as most people would do. However you get a fair amount of really intense stares or turning to the person next to them and whispering, making me feel really self-conscious. Sometimes I wish people would just ask what’s happened to relieve the tension. Some people do ask … however this is where I’m at fault and probably the main reason for writing this blog. Other than healthcare professionals or people that know I have epilepsy, I tell them I fell over. This conversation normally goes in the direction of “were you drunk? “No, I just fell over in the bathroom ... I’m really clumsy”. I don’t know why this comes out of my mouth? Embarrassment I think. But the only way of raising awareness of epilepsy is if people embrace their condition, therefore I should be telling them the real reason of how I got the injuries. Sometimes I find it easier to write about it than talk about it, one of the reasons I am writing this. Looking back … I don’t know why saying falling over in the bathroom as a 25 year old is less embarrassing anyway!
My neurologist has decided to increase my epilepsy medication, which I increased three days ago, already giving me some unwanted side effects and a slight feeling of being ‘drugged’. (Glad I wrote the majority of this last week). But a few weeks of feeling rubbish while my body adjusts to the medication will be worth it if I don’t end up in this situation again.
I’ll stop rambling on soon, the few main points I wanted from this blog to raise awareness or help someone in a similar situation:
Big thanks to:
Sara
All I wanted to do was sleep, after another hour or so a lovely nurse came and helped me to the bathroom. Anyone that has had a seizure knows the feeling that your muscles feel like they’ve gone through a marathon, but this one I really felt battered and bruised with a mouth cut to shreds and still bleeding. The nurse was quick to point out all the bruises I had gained during my little adventure, plus a few broken bones! Piecing pictures together we think I fell backwards onto the toilet on my shoulder, then smashing my face into the wall, hitting arms and legs into walls, cupboards and doors. As you can imagine a few cm either side could have ended up in a lot worse injuries.
As many know I also suffer a bleeding disorder, therefore due to my injuries I had to go and see the haematology team in a different hospital prior to going home and sleep. I have a platelet function disorder which means my platelets don’t work like they should and therefore due to my injuries I needed a platelet transfusion to help stop the bleeding, otherwise I would turn into one big bruise! I am very thankful to everyone that donates blood or platelets, as they help all kinds of people in all different situations. It really is a great gift, so please donate if you can. I had to get a further platelet transfusion the following week to continue to aid the healing.
I’m really lucky for all the family and friends I have for the lovely messages, visits and thoughtful gifts to keep me occupied over the coming days I received.
Over the last few weeks I have spent lot of time in and out of hospitals and doctors’ practices mainly due to the injuries from the seizure and a few complications. The one thing I have realised is when you go into a room with two black eyes, an air cast boot and crutches everyone turns to stare, this mainly happens in the hospital or GP practice! Sometimes this is a brief look as most people would do. However you get a fair amount of really intense stares or turning to the person next to them and whispering, making me feel really self-conscious. Sometimes I wish people would just ask what’s happened to relieve the tension. Some people do ask … however this is where I’m at fault and probably the main reason for writing this blog. Other than healthcare professionals or people that know I have epilepsy, I tell them I fell over. This conversation normally goes in the direction of “were you drunk? “No, I just fell over in the bathroom ... I’m really clumsy”. I don’t know why this comes out of my mouth? Embarrassment I think. But the only way of raising awareness of epilepsy is if people embrace their condition, therefore I should be telling them the real reason of how I got the injuries. Sometimes I find it easier to write about it than talk about it, one of the reasons I am writing this. Looking back … I don’t know why saying falling over in the bathroom as a 25 year old is less embarrassing anyway!
My neurologist has decided to increase my epilepsy medication, which I increased three days ago, already giving me some unwanted side effects and a slight feeling of being ‘drugged’. (Glad I wrote the majority of this last week). But a few weeks of feeling rubbish while my body adjusts to the medication will be worth it if I don’t end up in this situation again.
I’ll stop rambling on soon, the few main points I wanted from this blog to raise awareness or help someone in a similar situation:
- Being alone when having a seizure is incredibly dangerous, I am very lucky for the actions of my best friend and boyfriend.
- Having a tonic clonic seizure isn’t always like they portray on TV, when they are back to normal after 2 minutes and eating in a restaurant about an hour later. The side effects and injuries you can sustain can last weeks and weeks
- Anyone that donates blood/platelets really are doing such a great thing
- Don’t be embarrassed of explaining any chronic illness/disability you have, many invisible illnesses really are misunderstood and the only way to raise awareness of these is to be honest and open
Big thanks to:
- Charlotte and Jonny for being with me throughout and putting you through that (also Charlotte telling the hospital you were my sister to try and find out more information!)
- My family, friends and work colleagues for their ongoing support you truly are a great bunch (also sorry mum and dad for ruining the end of your holiday)
- NHS – I have some great teams from different specialties working towards me leading as normal a life as possible.
Sara