“Have you ever had any other medical conditions other than the impressive list of ailments you’ve already declared?” The operator on the phone read from her script.
“Nope”, I replied, “I’m actually quite healthy”, which apparently wasn’t funny.
“Because it may harm your defence if you do not mention when questioned something which you may later rely on in court”.
“I had hayfever in the summer of ’96” (which I actually heard her type in)!
“OK, for 4 days, that’ll be £800”.
No, I’m not being arrested for inappropriate public behaviour/being drunk and disorderly/drink driving/criminal damage which turned out to be a seizure (yes, this actually happens!). It’s much less dramatic than that…I’m going on holiday….to NEW YORK! So, after a considerable amount of time and stress researching to get the best deal, you could say I had found it!!! But I wasn’t happy about it, not at all! You see £800 wasn’t the cost of the flights (at £400 they really were a good deal!) No, at the cheapest quote….£800 was how much the insurance was!! It would seem that membership to Club Epilepsico was quite pricey!
25 days prior to take off, I was about to experience one of the most crazy, scary and unreal chapters of my story! Starts with payday drinks (a favourite NHS tradition of mine) and ends with me sending a congratulations card to a friend whose dog had died!!
Let me explain…..
After a few glasses of wine, a friend and I decided to head home on the bus. Stepping out of the bar is my last memory until I woke up in that oh so familiar blue and white dotty dress. Even in my post-seizure state, It took me approximately 3 seconds to realise where I was!! And a further 1-2 seconds for the humiliation of dragging my poor friend to A&E for an unexpected Friday night slumber party to hit me (he’s since told me he had a great time playing the hero and riding in the front of the ambulance with the flashing blue lights)! There were so many unknowns…. What had happened? What day was it? Had I had any ‘accidents’ of the urinary kind? Was I injured? As if all of that wasn’t taking up enough brain space, it seems I was then transported into some warped version of ‘Who wants to be a Millionaire?’ only without the £1,000,000 prize, when a Doctor comes in and starts quizzing me Chris Tarrant style….”Who is the Queen of England?” “Where are you?” Do you mean geographically, literally, at this point in my life? I mean come on Chris, you’re going to have to be more specific than that. “Can I ask the audience or phone a friend?”. I’ve got this terrible habit when I’m in a hospital of thinking I’m absolutely hilarious….could be nerves, could be the post-seizure comedown!
Anyway, I do phone a friend…”Hi, can you tell me what the hell happened? Did I say or do anything awful? How did you get home? Did you see me naked? Oh, and who is the Queen of England?”
I don’t know if this is true of everyone with epilepsy but I always want to know exactly what has happened to me in as much detail as possible. I think it’s an anxiety thing, I don’t like the thought of not knowing what’s happened. Being the worrier that I am, my mind is always on worst case scenario, so it’s reassuring to know that nothing too humiliating has occurred (of course there are times when something humiliating has occurred and perhaps in these scenarios, it’s better not to know!!).
So here we are again, one day rolls into the next and for the first few days I feel my usual post-seizure self, tired, achey, confused, unsteady and emotional (pretty much me every day then!). And then something crazy happened! Not normal crazy, I’m talking bat-shit crazy! I didnt really recover properly from the first seizure and then over the next few days I suffered more, it was like putting someone in an active seizure on the waltzers and pressing fast forward! Other than a few random patches of memory, I dont remember a thing! But thanks to my family and friends, I have some cracking stories of this time! Here are a few particular highlights:
- My sister, Natalie can laugh now but at the time she was horrified when she came to visit and I demanded she put me in a wheelchair and took me to the shop! Natalie is one of the most kind and caring people I know, but she isn’t a ‘clinical’ person, cant even bear the dentist, so I would have given anything to see her wheeling me around in a hospital wheelchair (I work in a hospital and those chairs are harder to steer than a broken supermarket trolley)….perhaps I should see if there’s any CCTV of that time, could make us £250 on you’ve been framed!!
- They say that people who work in hospitals make the worst patients and this is 100% true for me, I don’t know how many times I got told off for getting out of bed to help the other patients to the toilet! I wasn’t trying to be difficult, I genuinely thought I was at work! On one occasion they told me they’d lost my notes and without a hint of sarcasm (and my fellow HCP’s will appreciate this), I said, “Have you checked Medical Records?!”. Eventually, one particular nurse gave me a stern talking to and put me under 24 hour surveillance, which I reacted to by phoning my friend to tell her they were conspiring to kill me!
- One evening I phoned my other sister Kirsty, and told her that she must immediately drop everything and bring me in a notebook, being the most lovely person that she is, she dutifully followed these instructions despite having her hands full with a 7 month old baby! When she turned up at my bedside with a notebook and asked what it was for, I told her, “someone at work is leaving so I need to start working on my application for their job!!!!” I mean, I couldn’t even walk to the toilet without bouncing off the wall, why I thought it was the perfect time to start describing my radiation delivery skills is one of those great mysteries I’ll never understand!!
This crazy charade went on for 2 whole weeks! Day after day of mental-me running around the ward, acting like a drunk Florence Nightingale, eating a range of culinary delights including Cat-Sick Curry (like Katsu but where Katsu is replaced with a lumpy substance resembling the contents of a cats stomach), Beans and Bolognese (yes literally Baked Beans and Bolognese- no Spaghetti) and Roast Dinner without gravy, (“Excuse me, Where’s the gravy?”, “Oh, you didn’t order gravy”, “was I mid-seizure when you took my order because I would NEVER ask for no gravy and you should know this, can you please record this in my medical notes so this doesn’t happen again”), cracking inappropriate jokes and wondering if it might be possible that one day I’d look back on this as all just a hilarious story….
And the reason for this terrible state, nobody has ever been quite sure, but probably a result of too many different drugs and my body declaring in Dragon’s Den style, “I’m out”!
By the time I was finally released, it was just 12 days until my trip! It was touch and go, some people thought it wasn’t a good idea and some people said, “Go for it”! I have to admit, I was swinging more towards the ‘terrible idea’ notion, but never one to follow my gut instinct, I did go for it! So begins my frantic attempts to get some insurance….. Apparently I’m a very precious and expensive package, well that’s nice!!
Before we even made onto US soil I had to explain to airport security that ‘due to a magnetized piece of equipment implanted in my brain to control the build up of cerebrospinal fluid and stop it crushing my brain’ I was unable to walk through the normal security machines (which wasn’t to bad on this occasion as everyone spoke English, but trying to explain this on my return home from Greece on another occasion was quite tricky- how do you charade this?! Any bright ideas, get in touch!). This tricky situation was further complicated when I approached the thumbprint detector at JFK….I took a deep breath, tried my best to look completely innocent and said,
“Hello, I am afraid I am unable to provide you with a thumbprint. I was checking into a hotel last night before my flight and I reached into my sister’s boot to take out our bags. Unfortunately, my sister filled up her toiletry bag so much that it wouldn’t shut and when I grabbed it, my thumb came into direct contact with her razor and I’ve shaved my print clean off. But she has her razor if you want to try and get a snippet of my DNA from that”! He looked at me and I’m frantically trying to remember if that £800 insurance included any kind of legal cover, I think I’m going to need a lawyer after all this ludicrous behaviour. I enjoy a story, but getting arrested for suspicious behaviour is taking it a bit far!! His reply, “Just use your pinky, ma’am”. Phew….A huge sigh of relief, a note to myself to remember this moment for my future blog and 4 days of the (mostly) drama-free and wonderful time with my 2 lovely sisters. Some takeaway points for people with a medical condition who find it difficult to travel…..
- Shop around for insurance. Don’t rely on Aleksandr The Meerkat (there’s no such thing as a free cuddly meerkat teddy).
- Take all of your necessary medication and documents with you
- THE IMPORTANT ONE: Be kind to yourself! A few years ago I wouldn’t have considered boarding a plane to New York (or anywhere for that matter) any great achievement. But when you know that at any moment you could fall unconscious, break a bone, lose your personal possessions and rely completely on total strangers, it’s massive! You deserve a big ‘Well Done’ and to have a lovely trip just like everyone else, so go for it!!
Oh, I nearly forgot the ‘dead dog congratulations card’ story….The whole reason for me demanding my sister put me in a wheelchair and take me to the hospital shop was so I could buy some cards….a sympathy one for a friend whose dog had died and a congratulations card for another friend who had got a promotion….you can see where this is going. I carefully wrote each one in my best handwriting…not an easy feat when you’re barely conscious and left handed! But my downfall came in the unfortunate mix up of the names and addresses….Amy was surprised a few days later when a sympathy card arrived mourning the loss of poor Patch! Embarrassing right?! Well not really when you consider Sarah’s reaction when she picked up her card and in the fog of her tears read, “Congratulations, I’m so pleased for you and you deserve everything that’s happened to you”…..At least I can blame it on the brain!!!
Lots of Love,