Fits & Giggles

“No matter how bad it seems today, life goes on, and it will be better tomorrow”

I really hope that by now, if my blog has done nothing else for you, it has shown that it is possible to find the positives in the negatives, the rose in the thorns, the rainbow in the rain and the giggles in the fits. Even if sometimes you have to look a little harder than others.

The last 15 days have been like playing a game of hide and seek, where positivity is the hider- a needle, and I am the seeker, and we are in a hay stack, and it’s night time.

Let me give you a very brief overview: went to work, had a seizure, went to hospital, staid in hospital, had more seizures, cried, got angry, wondered what I’d done to deserve such bad luck, cried, fell over twice, didn’t sleep, got poked and prodded endlessly, cried, mourned the loss of the visit I was supposed to be making to my much missed family abroad, ate some pretty terrible food and got constipated! Doesn’t sound very positive right?!

I thought about all of the posts I’d written and all of the things I’d already endured and how ironic it was that here I was, struggling to come up with any positives at all- perhaps there were no more giggles left. I can’t find any positives in this whole sorry mess. But I thought about the aforementioned Dorothy, and I took some advice from another wise lady that I’m very lucky to know- my 7-year old niece Ruby, who believes that having a positive attitude is asking HOW things can be done rather than saying they can’t be done! Very wise words Ruby!

The infamous net knickers- as uncomfortable as they look!

Then one day, I went to get dressed. I looked in my bag of clothes (I say ‘my’, I actually mean an array of outfits donated to me by my very amazing friends- Zoe and Kate, and Vicki who took them away and washed them), and realised I had no clean pants left, I was feeling worse than ever. That rainbow was nowhere to be seen and never mind half empty, the glass had nothing in it! I asked the Nurse if the NHS provided pants to poor, hapless individuals like myself and she ran off to get me some. She returned a little while later with a tiny piece of netting- what am I supposed to do with this? It looked like something you’d keep your satsumas in, not something that sits comfortably between your legs protecting your delicate bits! I went to the bathroom to get dressed and as I attempted to pull this tiny piece of netting up, I couldn’t help but laugh my head off!! I can’t explain why it was this specifically that shifted my mindset- maybe it was my sincere gratitude that net knickers are better than no knickers, or maybe it was the realisation that when you’re stood in a hospital shower room trying to squeeze into a piece of netting- there is only one way to go, and it’s not down! Either way, I decided at that moment that I had done enough wallowing, it was time to start focusing on the positives in this experience, and here’s what I came up with:

1. How lucky I was to be able to access healthcare. This is a luxury that we take for granted that isn’t available to everyone. For that I will always be grateful.

2. I have amazing family and friends. It’s easy to take family and friends for granted, but each time, I learn not to. I am completely in awe of each person I know- whether or not I see you in person much, I never stop being reminded of how fantastic you all are. A nurse said to me, “aww, you don’t have any cards or anything”, and I thought to myself, “No, but I have family and friends who have saved my life more than once, keep me safe, drive around for me, make me laugh and keep me company with visits, phone calls, messages and gifts, speak up for me when I cant speak for myself, worry about me, spoil me, wash my clothes, give up time with their family for me, offer to cook for me, make sure I have food and drink, make me laugh, keep me in their thoughts and remind me over and over again that I don’t need to worry. So I don’t really need cards or anything” (not that it hasn’t been lovely and I’m very grateful for the lovely cards I’ve had)!

4. Each hospital stay is an opportunity to learn something new….this time I learnt you can order takeaway directly to your bed. This means however terrible any future hospital stay may be, it will always be that little bit better knowing I am only ever 30 minutes away from a Big Mac.

5. When someone who 7 days ago was a complete stranger gives you a hug as you leave and tells you, “I couldn’t have got through this without you” with reference to their M.S. diagnosis, it feels pretty damn special. I met a wonderful lady and within 7 days, we’d talked poo, sexy Doctors, life changing events and believe it or not- some normal conversation too! She is now going to be a friend for life!

I’m going to keep this post short and sweet because I have alot of sleep to catch up on and following a torturous 30 hour sleep deprivation test (part and parcel of investigating epilepsy apparently), I’m nakard and probably not making much sense….

In summary: you can be sad, angry, upset, overwhelmed, anxious, drained, unsure, afraid or tired and STILL be positive. Also, hurrah for net knickers!!!

“You may not control all the things that happen to you, but you can decide not to be reduced by them” – Maya Angelou

Lots of Love

“Coping is the process of turning shit into sunshine”

My wonderful nan- Dorothy used to say, “put can’t in your pocket and pull out try”. As a child, I didn’t pay much attention to this as I hopelessly declared, “I can’t draw that/write that/spell that/read that/eat that”. But had I known how important Nan’s words would be in helping me cope when my life gracefully skidded off the tracks, I would have thanked her there and then.

As I grew into a nervous, doubt-filled young lady, my ‘cants’ became more varied and adventurous: “I can’t run a half marathon, I can’t bake a cake, I can’t be trusted to deliver radiation, I most certainly can’t survive 4 lots of brain surgery and I categorically CANNOT cope with the catastrophe that was to come”. Well thank you Nan, it was your words I thought of as I encountered each of these hurdles, I did put can’t in my pocket and pull out try and turns out, I can cope!

So how do we do it? How do we cope when life puts a great big can’t in our way? Over here at fits & giggles, I strongly believe that the power of humour, with more than a hint of naive positivity usually does the trick.

My default mode as I’m being scrambled into the back of an ambulance is, “I’m fine” and if I keep repeating this, everything will be ok and people will marvel at how well I deal with difficult situations. Ironically, at these moments I’m not even trying to be humourous…I genuinely believe that I’m fine, I blame the drugs! My friends have told me that owing to the fact that my favourite saying immediately post-seizure is “I’ll be back to work on Monday”, they are going to have these words engraved on my headstone!!

Usually, my bravado/arrogance lasts about 3 days before some poor nurse has to sit with me whilst I cry hysterically about the state of my hair/my lack of clean pants after unexpectedly ending up on a 7 day vacation that I haven’t packed for/the indignity of being handed an iPad displaying various consistencies of poo and asked to select which most closely resembles your latest movement…side note: this is actually very stressful, imagine at the opticians where you have to pick the clearer one- A or B. This is a lot like that, except if you pick the wrong one you’ll end up with an enema!

But I’m very well aware that it isn’t just me who has to cope with these moments of madness, it is my long-suffering friends and family too.

Some friends coped with my theatrics by insisting on bringing me in copious amounts of sugary snacks (which I am certainly not complaining about, but for future reference, if I’m going to stand any chance of selecting the most healthy poo on the iPad, I’m going to need fruit, not carbs!!). Others by sending lovely cards, gifts and messages (which always touches me deeply- so please don’t stop!). Some crease up laughing and re-tell their version of the story so we can all sit around and have a good old laugh at Hayley’s latest calamity. But by far, my absolute favourite coping mechanism, comes from my infamous sister, Natalie. Her answer to all problems whatever they may be, is ‘google it’. Approximately 5 minutes after telling her I’d been in hospital and diagnosed with epilepsy, I receive a message….”I’m sorry to hear that, but I’ve just been googling ‘celebrities with epilepsy’….Prince, Elton John, Martin Kemp, Lil’Wayne”, OK great, seems the old over-excited brain cell trend is rife among musicians….could be another avenue for me to explore!!

Me and The Boys: 5 epi’s, The Tonic-Clonics, The Rolling Eyes, any more ideas on a postcard to me please!!!

At the time, I wondered how the hell this great nugget of knowledge, courtesy of Google and Natalie was going to be of any use to me. Perhaps I’ll one day end up in a quiz where the tie-breaker is, “name 4 celebrities with epilepsy”, the rest of the team: “we can’t possibly know that”, me: “guys, put that can’t straight back in your pocket. In the great words of Dorothy Edwards, oh yes we can….”. Hypothetical Pub quiz aside, this little gem has done me very well, because now I know that laughter really is by far the best medicine, every time I hear purple rain and I have a little giggle to myself, I know that coping is about seeing the good or funny in situations where you can and allowing yourself to have a little laugh (at your own expense if needs be)!

The fun times didn’t end with Prince. I can look back on a lot of things that have happened over the last 4 years and laugh, and here are just a few…..

The time when I arrived at A&E with my friend and headed straight for the toilet (assisted of course). My friend was approached by a bunch of concerned looking, over zealous Doctors who insisted she rolled her sleeve up for routine observations. That was until I stumbled into the room like a toddler on roller skates, and they realised my poor sleep deprived friend wasn’t the patient.

Or the time when I demanded my sister come in and straighten my hair. I felt like a million dollars and marked the special occasion by insisting my friends and I used the family room to get a dominoes delivery and party the night away (the plan was thwarted by the fact that I couldn’t tell the delivery man where I was!).

Or the time when an unfortunate misunderstanding had me waiting almost an hour for a follow-up appointment, only to realise that the receptionist directing me had thought I’d said “urology”, not “neurology”….I had wondered why the waiting room was full of 70+ year old men and leaflets about catheters and incontinence!

Or the time when my friend brought me in some clothes and in my excitement, I packed up toiletries, some underwear, towels and a dress and practically ran to the shower room. It wasn’t until I’d finished showering that I realised the ‘dress’ was actually a top. Seeing no alternative, I had to shamefully walk past the hoard of doctors gathered around the reception for morning handover, with my bottom half completely on show. But hey, at least I had fresh pants.

I could go on, but if I tell you all my funniest stories now I fear I’ll have none left. Actually, who am I kidding, the unreal, crazy, circus-resembling chaos that is my life will never run out (I hope)!

I think the point I am trying to raise in this post is the issue of ‘coping’. There have been times in my life when I thought, “I can’t cope with this”, or, “how am I going to cope with the fact that I’ve lost my freedom and independence/I am unable to do the parts of my job that I love/I am scared to leave my house/I am reliant on total strangers/I don’t want to be left alone with my nieces and nephews? We all go through things we think at the time we cannot manage. Yet, here we all are, not just coping, but nailing it! Whether your tried and tested method is coffee drinking, inappropriate humour, googling ‘celebrities with epilepsy’, crying until your tear ducts go on strike or simply insisting, “I’m fine and will be back to work tomorrow” despite a limb hanging off or scoring 8 or less on the Glasgow Coma Scale (google it), if it works for you, that’s OK!

And as I finish up, I have a story of another time where I put can’t in my pocket and pulled out try and coped with something I never thought I could. It’s a tribute to the wonderful Dorothy, my amazing nan….

I was sat between my sisters as we said a sad good bye to nan. Between the 3 of us, we’d written a speech highlighting an entire lifetime of some of the most amazing childhood memories spent with her. But as we were about to go up to read it out to all her family and friends, I was suddenly hit with fear….”I can’t do it”. Then I heard her words and I reached into my pocket for try. 10 minutes later, Natalie, Kirsty and I are stood at the front of the church recalling story after story of the hilarious life of our nan. Like the time she tried to order a prawn jacket potato from Dominoes Pizza because she didn’t like ‘foreign food’, or how she collected every issue of the ‘Trade-It’ newspaper from her local Asda- not because she was looking for a new car but because she thought they were free and would be handy for wrapping up her food left-overs. She discovered they are not free when after about 10 years, she was stopped by a security guard for shoplifting! Within a few minutes, the whole church is laughing hysterically and it was at that moment I learnt a lesson that I didn’t know needed learning. That is that humour makes the unbearable bearable.

It has also just occured to me as I’m writing this post, that I now know exactly where my hazardous and calamitous nature comes from….THANK YOU NAN!!

Lots of Love,

“It’s not failure, it’s research”

5 things I learnt/achieved in the first 30 years of my life:

1. Average grades and a degree in ‘who gives a crap-ology’, (which I took because I believed that despite 18 being an acceptable age to drown your liver in toxic juice, it is not old enough to be thrown into the world of full-time work, this was my alternative!!)

2. All the ‘normal’ milestones. Some before others (talking came before walking because I’m chatty but lazy!)

3. To drive…a slow process which took 3 attempts before a questionable pass

4. How to pretend to know what I am doing (helpful in a job like mine)

5. That if you want to get to Swindon in less than 4 hours….the M5 is not the correct motorway to be on.

Like most people, I had a life plan. It wasn’t written out in a 90’s style fluffy diary in my best, only slightly smudged and illegible handwriting (it’s not easy being left-handed in this discriminatory world). Neither was it typed up and password-secured in my electronic ‘dear diary’….there was huge technological advances from the early to late 90’s!

No, my plan didn’t need to be written down, because it was firmly engrained in my brain and I was 100% confident I would reach it….failure didn’t exist! The life plan went: school, exams, university, exams, work (hooray no more exams, just daily off the scale stress), buy nice things, marriage, babies and a life of luxury….easy!! I felt it was more a guarantee than a plan! And it took me precisely 30 years and 3 days to ‘fail’! I’d passed all the boring bits no problem, but when I got to ‘buy nice things, get married, have babies and live a life of luxury I was a big fat F!

It then took another few years (and I’m still taking extra-curricular lessons), to begin to learn that all of that was someone’s life plan, but it wasn’t mine and it never had been! And ironically (like most things in my life), it took major brain surgery for that lesson to be learnt!

Rewind…

I consider myself to have had many ‘failures’ in life. By definition, failure is “the absence of success”, and success is “the accomplishment of an aim or purpose“. So, allowing my sister to cut ‘layers’ into my hair at the age of 12 resulting in a bowl cut on top of a longer bowl cut, was a failure. Sneaking my 8 year old sister on a bus into town to buy sweets and lying to my mum about it for a year only to find out that we’d been spotted and she already knew- failure of epic proportions (further compounded by the fact that my other sister had been bribing me for an entire year to not tell our mum, knowing that she already knew)! Leaving my car in a Tesco car park for an entire weekend because I forgot I drove it there- stupid, idiotic failure. You get the drift….its hard not to think that life is one big failure.

When I first found out about the surgery, my initial thought was, “That’s it, I’ve failed at life and I may as well give up now”. If failure is the absence of success, and success is the accomplishment of an aim or purpose, there was about as much success in my life at that moment as there were pringle’s in a popped can! But even in the most difficult of times, I try not to dwell on unhelpful thoughts and of all my failures. I do think I have a helpful knack of finding the giggles in the shits! In this case, the giggles came when my mind went into overdrive with all the potential outcomes of brain surgery….. I immediately set about researching* (*I typed ‘what percentage of brain surgeries go wrong?’ into Google, knowledge is power right? Horrifyingly, the thing that terrified me the most wasn’t the risk of seizures, strokes, haemorrhages or death, it was an article I came across entitled, “Woman wakes up from brain surgery with a Jamaican accent”…..

After the shock of imagining myself hopping off a bus and opening my mouth to say, “cheers, drive” but “Everyting irie, mi juss a gwaan bill” coming out subsides, I focus on a more positive approach. There is no point dwelling on the biggest failure of my life, a new plan begins to form….along with the brain surgery, all I’d have to do is practice the 100m sprint until I could complete it in under 10 seconds, then together with my newly developed Caribbean colloquialism, I’m the female Usain Bolt!! Although this new piece of information gave me and my friends a much needed giggle at the time, it was with great disappointment and dismay when my wonderful friend Kate, my first visitor after surgery walked through the door, and instead of “Ello, Hail up, Waa gwaan”, I simply muttered, “Hello, how are you?”…..now that’s what I call a failure!!

I guess my point here, is that it can sometimes seem like your life as you imagined it is is no more, it’s taken a one way ticket to the United Kingdom of Failure. Over the last 4 years, I have felt this on more than one occasion. What I thought would be earn lots of money, drive a nice car, have a gorgeous husband and mother a couple of cute and perfect children, has actually been: earn just enough to consider a shop at New Look a treat compared to my usual Primark splurge, take a daily commute with Metrobus Mike, and become so man-deprived that I am intrigued by an article entitled ‘Hottest Male MP in Lockdown’ (it’s Rishi Sunak if anyone is interested, and the article can be found here: http://www.mirror.co.uk/3am/celebrity-news/chancellor-rishi-sunak-voted-hottest-22029768.amp)!

But I have learnt that this isn’t failure, it’s the opposite, this is a well-researched, successful story. I may not ‘have it all together’, I may not be living the life I imagined, but it is my life and I love it! It’s full of adventure, laughter, tears and crazy times. And it is also a story which is constantly being drafted, edited and altered. By this token, it’s a success!! (OK, maybe considering Rishi remotely hot is a stretch)!

And just to prove that the things you consider ‘failures’ are actually just research…..

5 things that were never part of my life plan, and that I learnt/achieved post B.S. :

1. A 1st class degree and student of the year in a proper serious subject

2. None of the ‘normal ‘ milestones! Oh wait, which text book says marriage occurs between the ages of 25-30, adults experience pregnancy around the 27th year, and if you haven’t bought a home by your 35th birthday, you might want to consider a referral to a specialist? NONE!

3. Hard times are nearly always temporary, like the loss of my driving license (god help you all when the DVLA decide I am no longer a risk to public life!)

4. How to admit I don’t know what I’m doing…its fine now I have a convenient excuse for life, “the brain surgery made me do it/not do it” delete as appropriate!

5. It doesn’t matter if you’ve lost your licence, because If you take the train to Swindon, you don’t have to worry about whether you’re on the M4, M5 or M2nowhere #winning

Inna di morrows

“It is in the darkness that the light of friendship shines brightest”

You know the worst thing about having surgery?

Not the risks that come with general anaesthetic, not the scars you get, and not the time it takes to recover….No, it’s having to starve yourself for so many hours beforehand. So when I woke up from surgery number 4, I was ravenous! I would have eaten anything (even cat-sick curry got my salivary glands going)! So when my family turned up with enough sweet treats to open my own chain of newsagents and my beloved Dr. Pepper, all thought of self pity disappeared and I felt like the luckiest girl alive!

Approximately 30 minutes later, a Nurse comes into my room to check on me and to offer a bit of advice, “Oh, good to see you awake and alert, just to warn you, don’t eat or drink anything too quickly because your body is adjusting after major surgery and the anaesthetic will still be making it’s way through your system!”, I didn’t like to say that I’d scoffed an entire bag of squashies and a whole bottle of Dr. Pepper in about 20 seconds, I just led there feeling quietly smug that I managed to devour this little piece of heaven on the quiet!

It was approximately 10 minutes later when I felt that horrible feeling of overwhelming nausea creeping up from my stomach and burning my oesophagus. I rang the bell (something I hated doing!), a Nurse appears and quickly assessing the situation runs to get a bowl. I promptly fill this bowl plus 2 more with a sweet smelling bright pink substance. What happens next can only be described as pandemonium! Alarms start ringing and 6 important looking members of staff appear at my bedside (you can always pick out the important ones- they wear stethoscopes for necklaces!) I’m bewildered but impressed with this personal care! Turns out that vomiting post brain surgery is a major red flag that there is some kind of complication. I’m whisked straight down for a CT scan where everyone breaths a huge sigh of relief that my brain isn’t about to explode. The nurse comes in and in a voice I hadn’t heard since primary school, kindly explains “don’t you worry about anything, Dear”, and feeling not at all worried but rather sheepish, I made a silent decision that the great squashie scandal would stay between me, myself and I!

You could say that I got the karma I deserved because I spent the following 8 days extremely ill and this time I really was worried because I hadn’t so much as look at a bag of squashies. Yet I couldn’t seem to stop my stomach from emptying its contents approximately every 10 minutes! It was dreadful, and even now I struggle to find anything humourous about this time! But it was at times like this that I felt incredibly grateful for the wonderful nurses who looked after me, the HCA who wheeled me down the hall and sat with me for hours in the family room when some builders decided it was a good time to replace the windows in my room! Even though there was no way I could hold a conversation, she just sat with me, held a cool cloth to my head and gently rubbed my arm! I will always be so thankful to family and friends who turned up and sat with me whilst I vomited non-stop, and thoughtful messages from people with best wishes! Without a doubt, this was the darkest time, but there is a lovely quote which says, “It is in the dark times that the light of friendship shines brightest”, and I am lucky enough to know that this is most definitely true.

After 8 days, I turned a corner and a visit from my friend gave me the enthusiasm to attempt a walk up and down the ward. Whilst on my travels, the girl in the room opposite me was doing the same and as we passed she gave me a little smile, “Hi, I’m Amy, come over tonight and say Hello!” Initially I’m horrified….leave my bed to go across the hall to her room to say “Hi”?, sounds a bit adventurous to me. I probably wont, I’ll probably just stay here and smile when she looks my way! But lying there reflecting on the last 8 days where I genuinely felt my luck had finally ran out and I was about to embark on a never ending date with Mr G. Reaper, I was suddenly overcome with a “Fuck it, you only live once” attitude and I waltzed over to Amy’s room full of energy and confidence! I didn’t make it further than the door, because I walked smack into the shiny new piece of glass that had been placed there only days before- thank god I didn’t crack it, I don’t think I could handle another visit from Bob The Builder and his mates!

Bravado just about intact, I continued my walk over to Amy’s. And so follows my meeting with one of the most lovely, strong and brave ladies I have ever known and the creation of the ‘Brainy Gang’. Amy later introduced me to Fran and Sue who had already vacated Costa del Southmead by the time I arrived and we get together whenever we can. Its priceless to have a wonderful group of ladies who completely understand all the crazy things that come with the all-inclusive brain surgery package! The things these ladies have achieved post B.S. is inspiring and I love them so much! And however awful this particular episode was, I laugh out loud every time I think of the first time the 4 of us met outside of the ‘prison walls’…..

Christmas, 2017…..

“See you at The Globe at 2pm”. Me, 2pm: “I’m here but I cant see you” . Brainy gang: “We’re here too”. 5 minutes and a walk of the entire pub later. Me: “The Globe at Coalpit Heath, right?!”. Brainy Gang: “Where the hell is Coalpit Heath? We’re in Bath ……Me: “Right, see you in 30 minutes”

Well they don’t call us the brainy gang for nothing!!

Lots of Love,

“The harder the experience, the more hilarious the story”

““

“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”.

March 2019….
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!!

Florence Nightingale: The real ‘Lady with the Lamp’

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,

“In the midst of chaos there is also opportunity”

“You may have a seizure, or a stroke”, were the words of the Neurosurgeon shortly before surgery number one, “Well I can hardly wait…where do I sign” was my thought! I didn’t know much about Neurology at the time, it would be weird if I did!! So I signed the consent form and went along with it, I didn’t really have a choice! Whilst sat in that room, already dressed for surgery, my only thoughts were on surviving and getting on with my life!

Little did I know the chaos that would ensue…..

So buckle up everyone, here we go….fast forward to Christmas 2017 and I’m marvelling in the fact that a new year is approaching and I’m making it my personal aim to go the whole of next year without any brain surgery!! I know that’s ambitious given that this seems to have dominated my life for the past year, but I’m feeling positive!

Well, I may as well have taken that positivity and shoved it where the sun doesn’t shine!! it’s the 27th December, 10:00am and I’m lying on the floor of the changing rooms at work!! I’d felt a little queasy….perhaps I’d overdone it with the turkey, or I’d caught some bug from my niece who’d spent the whole of Christmas Day with her head down the bowl! Either way, I needed to go home. Except, I didn’t make it that far. I fainted. 3 times. And the medical professionals I work with decided I’d be better off in A&E (my first trip of many!). After many tests and scans, my GP concluded, “it is normal for young, slim women to faint”. Well, Dr. Pepper* (*name changed to protect incompetence), I’m actually 31 (would we call that young?) and I like to think I’m in shape, but slim to the point of total pass out in the changing rooms at work? I’m not sure!!

So, I took matters into my own hands and did what any other person would do in this situation (right?!), I booked an emergency consultation with Dr. Google. For the record….I DON’T recommend this! Upon googling my symptoms, filling in a little questionnaire and typing in my credit card details (joke!), I took a sigh of relief….I was either pregnant or suffering from alcoholism….so nothing to worry about!!

A few months pass….I’m feeling a little strange, but I’m putting it down to the stress of coming to terms with my alcoholism (since it’s definitely not pregnancy!!). I can’t put my finger on it exactly, I’m just really tired, can never seem to focus and I’m overly emotional (this is new for someone who has been called ‘stone-cold’ before)!

Finally, my GP decides he has had enough of me and sends me for some more tests…a MRI and an EEG. I obediently went along with this, we’re just ruling things out, and I just need to cut out the booze because fainting from too many Jager bombs is just not cool!! A few weeks down the line, the word ‘epilepsy’ is first mentioned.

Skipping a few months, I’m lying in hospital listening to a Nurse confirming that I do have epilepsy and will need medication. I have a few thoughts:

I only know one person with epilepsy and he seems normal
Great, where do I get the drugs that will cure me
I’m relieved it’s not alcoholism, grab me a large glass of red

Turns out, I’d already been started on the drugs that would help me- Keppra! Fantastic, I may have taken a slight detour from my New Years positive outlook, but I’m back en route now! I had a few days in hospital whilst the medication kicked in- even had a visit from a therapy dog named Chase, and a few weeks off of work and then took a one-way ticket back to normality (or so I thought)…….

I learnt a lot in those first few weeks….

At first I hated the word ‘epilepsy’! My main experience of it was watching people on TV wet themselves mid-seizure, or bite their tongue off. I quickly became aware of my own and others pre-conceptions of the condition when I went out for the first time post-diagnosis.

I was feeling ballsy and took a trip to my local indoor shopping centre! I’d lost my driving licence, so it was 2 buses to travel approximately 4 miles, but that’s OK, I had time! I had an appointment at Specsavers, and he asked the dreaded question, “Do you drive?”, I hesitated…..Should I just say no? I don’t want to do that because it took me 4 attempts an a lot of blood, sweat and tears to be legally let loose! Should I say no because I lost my licence? But what if he thinks I’m a drink driver? (Never one to overthink!!). I decided to bite the bullet, “I can drive, but I had a seizure and lost my licence and was diagnosed with epilepsy”…..I waited……and then it came…..”Oh, so you have a problem with flashing lights?”….”No, photosensitive epilepsy only affects 3% of people with the condition, I’m not affected by flashing lights”……and the appointment carried on as normal!!! And I walked out feeling a sense of pride that I’d spoken about it as if it was a normal part of my life (because it was), and with an understanding of how little we understand about things that don’t affect us!!! I felt like a fully fledged member of the ‘hidden conditions’ club, like I was on a one-woman mission to raise awareness, and maybe, just maybe that I could cope with this unexpected hiccup that had swooped in, humiliated me, terrified me and everyone around me, and threatened to take me down…..

Those first few weeks and months were tough, I was juggling crazy medication side-effects, explaining this new part of my identity over and over again, returning to work and adapting to my ‘new normal’. There are a few key things I learnt during this time that I think is important to share for anyone going through a difficult time:

When people offer help, use them….they genuinely want to help
There is no manual so don’t be hard on yourself, you are learning as you go
Try to focus on the positive- you are still you!
You will look back on this with lessons learned, knowledge gained and strength grown
THERE IS NO PRESSURE OR EXPECTATION!

Lots of Love,

“You can’t have a rainbow without the rain”

Fast forward 4 years from my disastrous, yet somehow hilarious 30th birthday (I enjoyed it so much I did the same for my 31st birthday!!) and I’m sat on a train heading to Paddington. It’s an exciting day because I am meeting my Godson, Leo for the first time…

My dear friend, Carly is his Mummy. Carly and I have had some wild adventures since we first met at school a whole 23 years ago 😯 She is the egg to my bacon, the gin to my tonic and the calm to my storm!

Last year I was her maid of honour, which is only fair given that the only reason she was getting married and that Leo exists is because of me (ok other factors were involved)…..the story goes like this:

Gin to my Tonic – Carly’s Wedding, July 2019

We’re back to May 2016 and it’s the day after I’ve been told of my ‘surprise’ birthday celebrations! As is tradition, Carly and I always get together for celebrations around our birthdays (she’s 12 days older than me and she’d better not forget it). I travel to London and we have a right old knees up (aka. We walk around London reminiscing about our life in Bristol, drink a bit of wine if we’re feeling particularly devilish and go to bed at around 11pm). Even though I’d just been delivered some pretty shocking news that I hadn’t even had chance to digest myself yet, let alone tell anybody else, I boarded the mega bus (I didn’t want to waste the £2.20 fair!). 4 hours later, I’m sat opposite Carly and our conversation goes something like this….”I don’t want you to panic but I’m going for brain surgery on Tuesday”…..I have received training on effective ways to deliver bad news….”be to the point and clear”, so I think I smashed that!! Poor Carly thought we were just meeting for a milkshake! Anyhow, quick catch up over, Carly and I had a lovely weekend and I’ll never forget how she distracted me that weekend with a visit to the circus (ironic) and the south bank comedy festival (also ironic)! They say that friends are people who make your problems their problems so you don’t have to face them alone, Carly all but underwent the surgery for me that day and I never once felt alone.

Tuesday rolls around and it’s D-Day, or as I like to call it….B.S. Day!! Skip the gory part and I’m wide awake and ready for a visit from none other than my egg, my gin, my calm. Carly strolls in, and with 6 short words, I realise that normal life has resumed. “I’ve met a guy at work”….”right, so what’s the problem?”, “he’s a little younger and his Mum also works there”. Now under any other circumstances and knowing Carly as well as I do, I would’ve said, “Terrible idea. Don’t even go there. What if you get caught having sex in the resources cupboard and get sacked?”. However it seems post-brain surgery me was a little braver and a little bolder. “Fabulous. Go for it. You only live once and life is short”.

3 years after my rock-solid advice, I’m standing beside Carly as she marries Sean, she didn’t get sacked for having sex in the resources cupboard (whether or not this event even happened is unknown) and I’m able to write and deliver an entire poem based on this whole crazy charade! Not quite a year later, I’ve just met him….my perfect godson Leo James Clarke and I am in love! As you can see from this picture, I think I did a pretty good job….

the look of love (or…’I love anyone who gives me milk!’!)

It’s extra special to me that Carly and Sean picked me to be a Godmother to their most precious gift. We’re skipping a large chunk of the story here bit this seems relevant, and what I really wanted to discuss before I went off on a tangent….

Not long after my brain got an airing, I developed epilepsy (now you see where the ‘fits’ of ‘fits and giggles’ comes in)- more on that later….

Not only has this been an unforgettable journey for me (or forgettable if you’re considering the memory loss), my friends have joined me for the ride (how else would I be able to recount my hilarious stories without them filling me in once I was conscious enough to comprehend anything!). I’m not sure how many of them would have agreed to join in had they have known the chaos I’d cause, but none of them have ever complained so I would say that’s an unspoken “yes, we’d love to join you for a never-ending episode of Casualty”! Major players here- Carly and Sean have had to deal with my theatrics on more than one occasion…I wouldn’t go as far as to say they love it, but I think they have found some of it mildly entertaining. Like the time I side-stepped crab-style across the A&E department like it was totally normal, or the time I informed them that there was a dinosaur in the room! In fact, Sean has never even known me to be ‘normal’. So to pick me, an absolute, disastrous clown of a person to play such an important role in their sons life is nothing but the greatest honour and it means so much to me. And despite all my mishaps and disasters, I hope I can teach Leo a few things about life, adversity and the importance of not letting the tough times bring you down. After all, “everyone wants happiness, no one wants pain, but you can’t have a rainbow with out the rain”. I’m a huge believer in everything happens for a reason, and if the result of my brain surgery, morphine induced advice is Leo, what better reason is that?! (Maybe sex in the resources cupboard had a small part to play too!!)

Lots of love

“If Plan A fails, stay cool..you still have Plans B-Z”

It’s Early May 2016 and I’m fast approaching the big 3-0. Unlike a lot of people, I’m not dreading this milestone. In fact, I’m quite looking forward to it….life begins at 30 right? A chance to do something a bit different and an excuse for some surprises, a big celebration, holiday, nice jewellery, new outfit and sophisticated haircut to match the elegant and wise person I am surely going to wake up as on 25th May. Basically, I considered myself a fun-loving, strong, happy woman who was successfully nailing life, and with a good sense of humour…..Sorry, I lost focus there and thought I was updating my Tinder profile!

Where was I?! Oh yes, my transformation into a strong, independent 30 year old. Now here comes my first piece of advice….”be careful what you wish for”. Turns out, I got all of the things I had wished for for my birthday….and a whole lot more, best of all, it was all free! Here begins my crazy journey and the reason for my blog! It goes like this…..

I am at work one day (I’m a Therapy Radiographer in the NHS- special shout out to this special bunch of people). I receive a phone call from someone who introduces themselves as a Neurosurgeon and says, “remember that scan you had when you had a painful jaw and some mild headaches?”, “Ummm….barely, but go on”, “well, turns out there is an abnormality in your brain and you need to come in to see me as soon as possible”. As was typical of me, I went straight from practical mode….”I need to get some time off work for this appointment, I hope it’s on a day that’s convenient, he sounds sensible and friendly”, to the ridiculously outrageous, “Maybe I just have a super duper extra piece of brain and a hidden super power is about to be unleashed, perhaps I misheard and he said ‘PPI’ not ‘Neurosurgeon”, in about 5 seconds. Anyway, long story short….I hadn’t misheard, he was a Neurosurgeon and I did have an abnormality which would require immediate surgery. So there I was, 2 days after my long anticipated 30th birthday, awaiting brain surgery…I did say I wanted to do something different, so that’s the first thing ticked off my list. A couple of years after all of this, I started writing about my experiences in the form of poetry, an extract of my first one I will share at the bottom to give a more in depth idea of my thoughts at the time.

Needless to say, it was a huge surprise…..a good one? At the time, I would have said, “absolutely not”, but fast forward 4 years, and I would go as far as to say, “no, but a fun-filled, wild, crazy, unexpected roller coaster ride….100% YES”.

So nowadays, my life is completely different to how I imagined it would be, but if I was to update my Tinder profile now, it would probably read: I am an anxiety-ridden, nervous wreck of a woman who enjoys making memes about my funny (yet actually quite unfunny) life. I am reliable (you can guarantee I will throw myself on the floor epileptic style every 3 months) and the best thing about me is that if you upset me, I’ll probably forget. I enjoy speed sports (well riding in a fast moving ambulance with flashing lights, but it’s similar). As well as fun-loving, strong and happy with a good sense of humour (I’d probably leave out the bit about nailing life…nobody likes a show off!). Seeking someone who is calm in a crisis, happy to spend endless nights in A+E and enjoys roller coasters (particularly the ones where you don’t know how high or fast it goes, how many times it goes upside down, whether anything is going to jump out and surprise/terrify you and you’re not sure if or when it’s going to end!!) If this sounds like you, get in touch now….

I’ll leave you with some advice until next time…if you make it to Plan Z and it still fails, you’re not meant to have a plan!!*

*some (but mostly no) details have been dramatised for humourous purposes!!!