How It All Began – Part Five: D Day

The final countdown had begun. With 6 weeks to go until I would see my Neuro and get my MRI results I decided to throw all my efforts into our upcoming trip to America. My boyfriend and I had booked to go to New York and Washington DC before any of my symptoms surfaced; there was NO WAY this stupid health ‘blip’ was going to stop us having the holiday of a lifetime. Aware of my symptoms but unware of what they meant I had no desire whatsoever to take things easy. If there was a path connecting the place we were to the place we needed to be we’d walk it, no matter how far – we had no interest in whizzing past the sights in a taxi. You can imagine then, just how much walking was involved on this trip! Residing in a chic hotel just across from Central Park we spent our early, jet-lagged mornings strolling through the delightfully peaceful pathways lined with endless rows of benches.

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We soared to the top of the Empire State Building, we spent a rainy day admiring Lady Liberty and soaking up some culture on nearby Ellis Island. We ate pizza in Times Square, discovered a love of salted pretzels bought from street vendors, visited as many art galleries as we could and quite simply had the BEST time EVER.

Looking back at the photos and remembering all the things we did it’s hard to recall how I was feeling physically. Eight plus years on, I cannot imagine doing half the stuff we did on that holiday, even though I did do it with MS! The biggest issues I experienced related to exhaustion and heat intolerance. Resisting rest, my symptoms were in overdrive. As well as the usual pain and tired and heavy limbs, numbness and odd tingling etc I was dragging my feet pathetically along the ground when I walked – a symptom I now know to be ‘Drop-Foot,’ and my continence issues were becoming unbearable. Added to this my eyes decided to get in on the action. Optic Neuritis had been causing me lingering problems for the past couple of years, but of course I didn’t know it was Optic Neuritis, I instead blamed my contact lenses (which I still insisted on wearing because I HATE wearing glasses). Every time I overheated or became fatigued my vision would blur. Ironically, I would probably have seen more from a taxi than I did when walking – my vision was sooo awful on that trip. We would have to stop every few minutes for my vision to settle before we could move on. Loss of vision has got to be THE scariest symptom of MS. It scares me NOW, but curiously it didn’t scare me THEN – because, of course, I was going to be fixed – I just wished that they could have fixed me before this trip!

Halfway into our New York adventure we boldly embarked on a walk across Brooklyn Bridge (both ways – there AND back.) Choosing the hottest day possible was perhaps not the brightest of moves, but then I wasn’t aware at that point that heat was my enemy. Despite my ever stubborn will, we didn’t make it to Brooklyn, not even close – that day remains the most painful day of my life, and I’ve given birth 3 times! Words to describe the heat and the crowds and the exhaustion and the loss of vision escape me, the only one that comes to mind is ‘hell’. But, boy what a bridge!

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However, New York heat had nothing on Washington DC heat. Never one for afternoon siestas – that place simply insisted we take a break during the day. It’s a fascinating city full of monuments, statues and MUSEUMS!! We were in our element discovering all the art, history and DINOSAURS in the vast air-conditioned buildings – just 9 days before I was to receive some life-changing news.

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Thursday 9th September 2010 – A beautiful warm and sunny summer’s day. I spent the morning cleaning and preening myself – you never know what these doctors are going to do to you – and waited for my parents to arrive to take me to the hospital. My mum seemed anxious, it transpires that she knew what I had – a conversation with my MS-ridden aunt the night before had confirmed her suspicions. I, on the other-hand, was still blissfully ignorant. My main worry that morning was having to face more probing questions from that stern doctor again. As it turned out my consultant was far more pleasant and caring than I’d expected him to be; handing a young lady a diagnosis bomb-shell clearly required a much softer touch! He stalled for time, perhaps not wishing to hit me with it straight away. Asking me how I had been I confirmed that I had indeed worsened since my last visit and spoke about my vision. He asked whether or not there was any family history of conditions and my mum began talking about my aunt, who incidentally had been living in the States for the past 17 years and who I was yet to reunite with. I sat there, a total outsider to this conversation that seemed to go on and on. Why was the doctor so interested in hearing about my aunt, what had her MS got to do with all this?! It still hadn’t clicked. Turning to the computer, our focus was then drawn to the images from my brain scan. “Can you see that little patch there? And another there, and there… there’s one, that’s quite a large one. There. There. You’ve got MS, haven’t you? You’ve got your aunt’s disease.”

5 thoughts on “How It All Began – Part Five: D Day

  1. So scary. It never dawned on me either that I had MS. I was just expecting to be offered a cure for whatever was wrong with me. No idea it could be MS, or what that might mean. Thanks once again for hitting the nail on the head.

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    1. Thank you, Cathy – I find it crazy that I wasn’t worried by my symptoms, glad I’m not alone in being surprised by the diagnosis!

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  2. I can relate to your story. I started to get ‘wierd’ symptoms in 2000 and in 2002 after some lovely optic neuritis I was told by an opthalmologist that if the optic neuritis returned that I might have M.S. At that point I thought my world was about to end and went travelling with my boyfriend. I cant believe that I walked in the heat with a big rucksack on my back. Walking up and downstairs is a challenge to me now. Your story is so similar to mine. Thankyou for sharing it.

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    1. Thank you – interestingly my neurologist was shocked that my optician hadn’t picked up on the Optic Neuritis – apparently a trip to the opticians can often start the ball rolling with an MS diagnosis! I hope you manage to remain upbeat about life, it sure can be a challenge at times! Emily

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  3. My first symptom was ON just over a year ago. I knew right away it was MS because it had been my aunt’s first sign, too, but it took six months to be officially diagnosed. Thank you for sharing your story.

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