The thing I had been fearing for so long and knew was coming happened on Friday; I had a tonic clonic seizure and fell down the stairs at the tube station on the way to work. I hate that I am even having to write this post but I’m writing this post so soon after as I’m hoping it will be a bit therapeutic and help me make sense of it all. However I’m currently taking Clobazam daily, am a bit confused still, tired, in pain and the events are a little hazy to say the least so this has been put together with the help of my sister, husband and notes from the hospital.
I had been off of work the previous week feeling rough with both general pregnancy and epilepsy, however I decided that I would be going back to work on the Friday. Why did I decide to do this against doctors and family advice when I didn’t feel 100%? Because I didn’t want people thinking I wasn’t making the effort, or saying that I was taking liberties with the amount of time off I was having. I was trying to prove that I was pregnant and not ill. I had felt unwell with the epilepsy the night before and should have taken Clobazam but because of how groggy it made me and knowing I had a 0445 start the next day I made the decision not to take it. I always tell people to listen to their bodies but in that instance I didn’t and I have paid a price my decisions.
I have realised that yes I am pregnant and not ill but I do have epilepsy and I need to cut myself some slack regardless of what people will think. It has certainly made me re-evaluate things and hammered home that I’m not as invincible as I like to think.
So what actually happened?
I managed to get all the way to the Tube station I get off at for work, then I remember being on the stairs and I got an aura and this was my warning, I remember trying to get to the floor before I passed out, but that is the last I remember. Next thing I knew I was at the bottom of the flight of stairs with a lady next to me. After having a seizure I am unable to talk, then I can only get out a word or two. Even when I do manage to start stringing sentences together I will then go back to only being able to get one word answers out. So please please if you ever come across someone you think has had a seizure, be patient, they may not be in a fit state to answer your questions for a while.
Whilst I’m at this point I’d like to ask as many of you to share this as possible (even if you don’t normally) as I’d like to say thank you personally to that first lady on scene. My memory of her was that she was very calm and really lovely. IF I remember anything it was that she was Spanish/Brazilian sounding – I however could be making that up, but she did have dark hair and tanned skin (I think!) and is likely to be local to the area as she was on her way to work. So if you happen to know a lady that was at Bow Road Station on Friday 6th at around 0640 please ask her just to get in touch.
Then I was surrounded by quite a few people, all asking me questions when I still couldn’t answer, and pulling me about. I know they were only doing what they considered best but at this stage they were frightening the life out of me.
Then thankfully my team mate appeared, for the sake of her privacy I won’t name her but she will never know how thankful I am that she appeared, a familiar face amongst a crowd of strangers. I remember pleading with her not to leave me and she didn’t until we got to the hospital and where we were met by Chris and Steph. She also took care of the practical stuff such as contacting Chris, informing work and making sure I had all my belongings with me still. I was in agony and then I started to get stomach pains and I do vaguely remember her demanding the station staff went and chased up the ambulance, reinforcing the fact that I was also pregnant, I really can’t thank her enough for all of that. Some of the staff at the station seemed more concerned with the paperwork my seizure meant they had to complete, again maybe that was just my recollection.
I’m told it was somewhere near 30 minutes before the paramedics arrived, but honestly it didn’t seem that long at all to me. When they did they thankfully understood that I would be struggling to answer them coherently at all times. They were concerned that I had spinal injuries and I was put in a head brace and moved onto a spinal board. I remember being treated in the ambulance for a bit, and being cut out of some of my uniform, but this stage is all very blurry, before being blue lighted to the hospital.
One thing I will also ask of people is that if you see someone collapsed please don’t gawp and openly stare! I know it is human nature but I already felt like enough of a freak without that happening.
“We aren’t winning are we”
Most of this next part is now taken from what I have subsequently been told but I have to say both the paramedics and resus staff are worth their weight in gold....We arrived at the hospital and I’m told Chris and Steph had beaten me there. I was taken straight to resus and subsequently cut out of the rest of my clothing! They examined my spine and there were concerns that I had broken it, so scans were ordered. Apparently at this point I said to the doctors:
1) Could I go home?
2) Could they take the cannula out?
3) I didn’t need to be there I was taking up a bed someone else could need.
Clearly I was talking gibberish. I was surrounded by several doctors and nurses but I do remember they kept telling me where I was as I had NO idea and got some pain killers in to me to try and help. Chris and Steph said they were also very good at keeping them informed and went and got them at the first opportunity they could to be with me. The next person I saw was a member of the Obstetrics team; she had come down to scan the baby as the concern was I had fallen on my stomach. I have no recollection of the scan and when she went away, according to Chris, I became hysterical saying if baby was hurt it was my fault and Id be to blame, no matter how much he told me baby had been scanned and was ok it just would not sink in. I then have vague memories of her coming back telling me there was a concern that the stress of the fall could bring on labour, and they wanted to keep me in to monitor me from that point of view, she then reassured me that IF it did there were things they could do to slow down labour and then help the baby.
I was wheeled off for an MRI scan, and it felt like an eternity I was in there, I was feeling sick and I was in total agony (more pain killers were due), the nurse who had accompanied me was amazing and I remember her doing her best to try and reassure me. Never knew how comforting a stranger holding your hand could be. It was then back to resus and I remember that I became hysterical and was shaking as I realised how many wires and needles I had in me. The resus doctor who was with me reassured me that it was totally normal as the adrenaline was wearing off and shock was setting in. She went to get Chris and Steph again, and she told them I had said to her “everyone’s so nice, you need to stop being nice you’re making me cry.” I am sure they are making all this up!
Most of the rest of the day was a blur of being strapped to the bed still, sleeping off the seizure, being given painkillers and doctors being there constantly. Much later in the day they were happy enough to take off the spinal board and head brace, I by some miracle had gotten away with ligament damage and severe bruising. We got moved into a private room so that I could be seen by the neurology team and other doctors, on insightfully commenting “We aren’t winning this are we”: understatement of the year. My consultant was on leave, so a member of his team come down, I don’t remember what he said but the outcome was I was to take Clobazam nightly until an appointment Wednesday. He was also in agreement that I needed to be kept in over night for them to monitor me from an epilepsy point of view as well as pregnancy.
It was after all this that I finally had a chance to take a good look at my sister and husband. Their bodies were literally sagging with relief and their faces showed the strain of the day. My heart shattered into a million pieces at knowing this stupid horrible condition had done this not only to me but to them.
Stay at NHS Hotel
I got settled onto the ward and again I was beyond impressed with the staff. I was still drowsy and sleeping on and off, but about 02:30am I woke up with no clue where I was, panicked and confused. Before I even had a chance to try and get out of the bed the night nurse was by my side, explaining to me where I was and what happened. He said he would get me some pain killers (neck and back were agony!) and then he did the best thing ever and offered me a cup of tea!
It was morning again, before visiting even started my friend Alex was in with a hot chocolate, again a familiar face made all the difference when I was still a bit all over the place. The new rounds of obstetrics, neurology and trauma teams checking on me began, all who were happy that I could go home on the condition that I rested. I was going home!
How am I now?
I have no clue how I was so lucky but somebody was looking after me and bump that day and I have spent every second since thanking my lucky stars. I am thankful to my team-mate for being there and making an awful situation that bit better, I know it can’t have been easy for her, and she will never know how grateful Chris, Steph and I are for everything she did.
Our NHS so often gets slated for what they do wrong, but when the chips are down they really step up and I will be forever grateful to them, to my in laws for sorting out the Pup, bringing food and pain killers for me as well as just generally being there.
Today I am in total agony; feel very stiff, still confused and very tearful but well aware of how lucky I am and how different it could have been. As ever my biggest thanks goes to Steph and Chris, I love you both more than words can ever tell you and I’m sorry that I scared you.
Ask questions, don’t judge
The next few weeks will be hard as I battle morning sickness, pregnancy and trying to kick the epilepsy, I have no idea where we go with my treatment now. I am back to being baby sat for the time being, not just because of the epilepsy but because of my injuries, I need help standing up and I can’t even lift my arms high enough to turn on taps. Thankfully Chris work have been totally understanding and told him to take the time he needs.
The biggest problem is that this has knocked my confidence far more than I thought it would and for the time being at least I’m scared of my own shadow!
What has this done to me? It has hit home how much NOTHING is worth what happened on Friday and the stern lecture from Chris and Steph when I was coherent enough just reiterated that. I have to stop trying to do it all, stop trying to prove that I can cope and just accept that the combination of sickness, pregnancy and epilepsy are making things tough. In short it has made me realise it is ok not to be ok for now.
I know that there will be people in the coming weeks who will question why I can do A and B but not X.Y and Z. But why shouldn’t I go for dinner for my Dads 65th Birthday, something I’ve spent weeks planning, why shouldn’t I go to the Young Epilepsy Awards (hell I would be in a room of the right people!) I am obviously taking it one day at a time and it depends on the day as to whether I will be up to things anyway.
Whilst you will see the things I manage to do there are also the things that I have had to cancel that people don’t see: mini breaks, time out with friends, supporting Chris at events for his yearlong charity event amongst other things. That makes me feel the worst especially as he gives me so much support.
If after reading all of this you do have a question or don’t understand then ask, don’t just judge how I am trying to cope with everything, it is hard enough without that.
All that is left to do is dust myself off, I may not have won this battle but the war is not over and I clearly have one tough cookie of a baby :) .
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.