‘Limbo’: A condition of prolonged uncertainty or neglect… What the heck was going on with my body? How long does it take to get a flippin’ appointment? Why couldn’t they just fix me NOW? As I awaited my first neurology clinic I grew increasingly frustrated. I was new to NHS waiting times. WHY WAS EVERYTHING TAKING SO LONG? Whatever I had was surely fixable and I was desperate to just get it sorted – I’d already had pins ‘n’ needles for 5 months, how much longer was I expected to put up with all this nonsense? (Um, try a lifetime…) It’s hard to recall exactly what was going through my mind at this time. If I look at photos from that summer all I see is a smiling face – what was really going on behind that beaming façade? I seem to remember losing my mind a bit. I became irritable and quick to snap. I was emotional and tearful and angry; I was sick of the pain and impatient for it to end.
That June I searched online for answers; I can’t have tried very hard – a list of my symptoms should result in ‘Multiple Sclerosis’ in big, snazzy jazzy, flashing letters, but that never entered my head or my computer screen. Instead I clung to the theory that my symptoms and mood were the cause of a low industrial hum outside our apartment. We lived in a converted television studio and the adjoining building was still being used by the TV station – big-ass fans hummed away at all hours, plus there was traffic buzzing round and round the city. Never one to hold much tolerance for noise I decided that the stress of these sounds was definitely the reason for my unexplained symptoms. Studies actually show that prolonged exposure to noise can cause many health problems, including dizziness, stroke and mental illness and that is what I diagnosed myself with. Good job we would be moving out of the apartment and into a nice quiet neighbourhood in just a few weeks. In the meantime I had lots to be getting on with – including a trip to Disneyland, Paris.
In the week leading up to my 28th birthday I found myself gallivanting around the Magic Kingdom in excruciating pain and tired slugishy weariness. I stood in queues, I walked, I talked, I gawped. There’s not much I didn’t do on that trip – and knowing now what I had then I am flabbergasted that I survived it. All my symptoms were still there – I had heavy numb feet, pain constantly shooting through both legs, an uncomfortable tight tingly feeling up to my waist, pins ‘n’ needles in both arms and hands, a tingly face, slurred speech, stabbing pains in my head, fatigued and restless limbs, pains behind my eyes and a shiny new symptom that continues to plague me: Bladder Retention and Incontinence – A bizarre contradiction of an ailment that leads me to being unable to empty my bladder one minute and then unable to hold it in the next. Urgh. But not even all of that could swipe the smile off my face. I was in Disneyland. DISNEYLAND!!
Two weeks after returning from Disneyland I finally had my chance to see a Neurologist, to get some answers, and to get myself fixed. Taking an extended lunchbreak from work I met my Mum at the hospital and we sat in THAT waiting room ready for my 12.30 appointment. I was feeling pretty confident right up until the moment that I met the Neuro – I’m not gonna lie, he terrified me. I was greeted by a Dickensian villain who’d been summoned to bully and intimidate me into admitting that I was making the whole thing up. I looked longingly behind me at the door – could I just run the heck out of there and forget the whole thing? Maybe I really was making it all up. Maybe the symptoms were all in my head. Maybe it would all just fix itself. More than 8 years on I have ridiculous levels of respect for my now retired Neuro, but on that first meeting I was feeling far too fragile to survive his super dry wit. It is clear he knew exactly what was wrong with me, but he didn’t let on – when my mum pushed him for answers he simply shrugged and said, “She’s perfectly well isn’t she?” NO need for haste – he knew I had MS and he knew there was no use in dealing me the blow until he had hard evidence, why ruin my summer? News like that could wait… the MS wasn’t going anywhere.
Coming Soon: Part Four: Give me an M, Give me an R, Give me an I. What have you got? Sorry, but you’ll just have to wait…
PHOTO: Buzz Lightyear to the rescue! Me (an MS-ified mess) and my ideal man.
6 thoughts on “How It All Began – Part Three: Limboland”
Oh Emily you write so well about all of this.
Really looking forward to the next instalment, although I could write it with you, so so similar to my own experience with my own diagnosis except the trip to Disneyland which must have been great fun despite your symptoms.
Keep on writing Emily, your writing puts a smile on my face whenever I read your posts.
New Year is just round the corner so I’ll wish you a Happy New Year now!
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Ahhh, thank you very much. My head is absolutely buzzing with blog ideas so lots more to come next year! Happy new year to you too.
Yes! This is where I am! I just had my head MRI and the reading is “suggestive” of MS. Now I’ve got to wait 3 weeks to see neurologist and discuss our plan of action. I’ve got so many questions and the waiting is awful. It’s go to know that there are others who have gone through this as well. Thanks again for writing! Happy new year!
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Man, it’s a horrible process hey?! Good luck with everything. And happy new year.
To infinity and beyond!
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Happy new year Emily – I look forward to your next episode !