“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:

  1. I only know one person with epilepsy and he seems normal
  2. Great, where do I get the drugs that will cure me
  3. 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:

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

Lots of Love,

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