Again change of plans in what this blog entry is, it was meant to be from Chris but will now cover the events of the weekend.
With Chris working a night shift, and being told I wasn’t to take part in the swimathon that Saturday I thought it would be a perfect time to spend some time quality time with my family and my nephew before he went back to school after the Easter break and take advantage of the gorgeous weather we have been having. So I hired a beach hut, I had a really bad night’s sleep but woke up almost as excited as the four year old. I envisioned a day playing in the sand with the kids, sea air helping my sickness and putting colour back into my cheeks and just a nice day overall. It did not go like that.
This was not how today was supposed to go
We had been there about two hours when I realised I needed to go and get the parking permit. I felt confident enough to go on my own and so off I trotted. I felt sick, and tired but nothing that I was overly worried about. The last thing I remember is thinking I’ll walk on the decking rather than the stones or I’m going to aggravate an old ankle injury. I had no real aura/warning of any description and next thing I know I am face down on the decking. There was nobody in shouting distance and I tried to call my sister but I couldn’t get phone signal. I knew pretty quickly that any injuries to me were superficial cuts grazes and bruises and nothing to be worried about, but my stomach instantly hurt. I sat there until I felt at least able enough to get back onto my feet and shuffled back to my sister in tears. I was really conscious of my nephew seeing me crying but just told him I had fallen over and showed him my grazed and bruised legs, and he had lots of sympathy and cuddled me telling me he loved me and he fell over in nursery sometimes. Steph sat me down and started checking me over and trying to calm me down. She asked if baby had moved and when I said no she sent her fiancée off for a cold bottle of coke, with hindsight I now realise she was trying to encourage the baby to move. She also phoned Chris (and woke him up!) and he said he was on his way with my maternity notes. My cousin arrived at this stage and the kids were all off happily playing on the beach, but I was getting stomach pains that I can only describe as cramping, she decided to call for paramedics. Now I have to say I got VERY frustrated with the call taker, and given what I do for a living I tried very hard not to, but following a seizure I can be a bit snappy anyway. The call taker had established with my cousin that I was epileptic and when my last fit was, but then proceeded to ask me if this had happened before, I kind of think the term epileptic explains itself! He told us that we were a high priority call and for family to watch out for the crew. As it happened Chris still managed to arrive from London before the paramedics. Chris seeing I was as ok as I was going to be asked if baby was moving. I said no, so he put his hand to my stomach and the baby that hadn’t moved in over an hour kicked for Daddy straight away. I was frustrated but very very relieved. However I was still getting stomach pains.
Calling an ambulance
Like I said we had been told we were a high priority call and it took over an hour for a solo paramedic to turn up. Within five minutes of being there she knew there was nothing she could do and radioed for an ambulance. This again took 20 minutes, and the ambulance crew informed me that they had been diverted from another call to me as I was higher priority. All this considered it took over an hour and twenty minutes for me to be put in the back of an ambulance. The next shock for me was that the nearest hospital and maternity unit was 25 minutes away!! Now I’m a Londoner through and through and I think my jaw hit the floor, 25 minute journey to the nearest hospital, after the last seizure it was a five minute journey. The original paramedic had phoned ahead to the hospital so the maternity unit were expecting me, as everyone was in agreement that any injuries to me were minor and I didn’t need A&E. The paramedic in the ambulance was very good, he kept chatting, timing the pains, watching my blood pressure (which was getting higher) and reassuring me everything was ok and keeping me updated on how far the hospital was.
At the hospital
I was taken straight in and seen by a midwife straight away and hooked up to a monitoring machine for baby and took bloods. The staff were lovely and really friendly, in-fact they all had a smile on their face! The midwife then said to me if you go home how are you getting home. I answered and she walked off. It took me a minute or two and I turned to Chris and said “she just said if didn’t she” I groaned as I realised I would be staying in this hospital over an hour away from home. The obstetrician appeared and checked me over, looked at the scan and said based on what was going on she wanted me to stay in. She then asked if I wanted to see a neurologist, I looked a little confused, and she explained that there wasn’t one about and they would have to call one in. I refused at this point, I was in the middle of a drug increase anyway, I wouldn’t want to see someone who didn’t know my history or who would play about with my neurologist’s decisions, and to be honest from a seizure point of view Id come off lightly. However I could not believe that they would have had to call someone in had I said I wanted to see someone, or that I had even been asked, it was just a given in London that you’d see one. We made a deal that I was to ring mine first thing Monday morning. Chris took this chance to go and phone our parents, when the midwife reappeared and asked if I was ready to be moved to the ward. This was all within two hours of arriving at the hospital that would never have happened in London.
On the ward
I didn’t pay any attention to the ward I was taken on to but Chris said he knew straight away I was on a labour ward, making him realise there was a very real concern that these pains were contractions. When I got onto the ward I asked them for my epilepsy meds. She said she would page the doctor to come and write it up for me. The doctor appeared took the details, went away and came back and said “we don’t stock them drugs in the hospital” sorry what?? It’s not like I’m on some obscure AED they are both very common. I looked at him and as politely as I could said that given the reason I was in there missing a dose would not be conducive. So off he went to find some from somewhere, he eventually come back with them.
I now have to say thank you to my cousin and her husband not only for their help at the beach but they luckily lived near the hospital and brought me up some pj’s, new underwear, clothes and a tooth brush and hula hoops – result! They will never know how grateful I am for them, it made the world of difference the following morning having them to change into.
I slept from the second Chris left to do the hour drive home, but I then woke up at midnight really confused again, the midwife was lovely and came and sat on my bed with me and reminded me where I was and what happened, she then checked baby again. I can’t say I had the best night’s sleep, and from an epilepsy point of view being woken up was not good for me.
I woke up very very sore and stiff but knew I yet again had been so lucky. They hooked baby up to a monitor for two hours to check them over again, I was again asked if I wanted to see a neurologist – again I refused. The obstetrician came in and she said they were happy that the pains had been Braxton hicks brought on by the stress/shock of the seizure. She was happy for me to go home if I was confident which I said I was. She then asked when I intended to return home, I told her as soon as they discharged me and she was not happy. I really thought at that point I was going to be told I was to stay in for rest, but she relented and said I was still ok to go but they weren’t happy about me travelling.
Difference in care
Having now been treated in a London Hospital and one outside of London Chris and I were comparing the care. In the hospital outside London the staff seemed happier, were more attentive and cheerful but on the flip side things like my medication, a neurologist etc. weren’t readily available, and the nearest hospital had been 25 minutes from where we were. In the hospital I am under in London the staff may have been a bit more abrupt sometimes but everything you needed would be under one roof, specialists were on call whether it was the weekend or middle of the night and the nearest hospital in London was never far away. Chris decided that he would rather have everything to hand as we do in London and forgo the pleasant staff of the Essex hospital. It again highlighted the difference in care depending where in the country you were. The doctors were shocked I actually had an epilepsy nurse, and that I was shocked that they didn’t have an on-call neurologist. The standards of care where epilepsy is concerned really needs looking at. However I yet again can’t fault the care from the NHS staff, they really are undervalued.
The seizure was on Saturday and we are now Monday evening. I am still sore, tired and shaky on my feet. I am also convinced someone is looking after me and baby for us to have been so lucky a second time. The biggest hurdle for me is that I had begun to regain confidence whilst Chris was in Vegas but I’m now back at square one. I had gotten to the stage thinking oh it won’t happen again and then it did. I also spent the Saturday night staring at the celling feeling so guilty, about putting Chris through it, the baby and my family. I really have had enough. Chris as ever was super patient, reassuring and understanding. When I first saw my reflection in the mirror I groaned at how awful I looked but my husband still reassured me that I looked beautiful, love really is blind :-) but I do appreciate it.
I have found it really hard since the seizure to deal with some of the comments that have come from people, I know people don’t always know what to say but comments such as “ah you have to stop doing this” aren’t helpful and when there are four or five people making similar comments really has gotten to me,especially when I'm still lying in a hospital bed! I do everything the doctors suggest, I take my meds religiously and nothing is making either the morning sickness or epilepsy better. Do you think I enjoy this or would choose this? Do you think I like putting my husband sister and the people I love through this? Or that I enjoy feeling like I’m failing at motherhood before the baby is even here?? That I liked getting changed last night and seeing the bruising to my stomach? Or keeping my husband awake because Im so uncomfortable and sore?? If in any doubt the answer is no I don’t, and if there was some magical cure I would be biting your hands off for it. I know I’m probably a bit sensitive at the minute (no one dare say hormonal!) but I also think people need to think a little before they speak. I’m gutted that the day didn’t turn out how I imagined, but I am pleased to say all the kids had a good time anyway and that’s all that matters.
To end on a positive I want to say thank you to Katy & Alex for all their help Saturday, to Ellie and Stuart as ever for being on hand to help out with Pup, to my sister and Chris for just being themselves, and again to Chris work for being so understanding.
I really am blessed with those closest to me and none of them will ever know how invaluable what they do or have done is. It just makes things that bit less stressful. Attached are some pictures of our day out before it was disrupted!
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.