My Story

Background Check

A photo I accidentally took once while 'working a case'
It's completely irrelevant, but I like it!

For those that don’t know me, I would like to introduce myself, give a little of my background and explain how I came to be writing a blog called Multiple Stupidness.

My name is Eddie, I'm 33, born in Ireland to English parents and (since I was three) brought up in the UK. Due to this, I feel quite closely connected to both countries and throughout my blog I will reference information and articles that I think will be of particular interest to both Irish and British readers.

At the tender age of 22 I married the most beautiful, caring and hard-working woman I've ever known, and in 2008 we were wonderfully blessed with our first child, a stunningly beautiful little girl (yes, I'm biased - get over it!).

For over ten years, I’ve worked as a professional investigator, variously investigating fraud, tracing missing and absconding persons and assisting with the gathering of intelligence on behalf of the legal professional and other bodies. For the majority of this time, I operated my own business, but since 2010 I was employed as a Field Investigator (that’s someone that works ‘in the field’ rather than an office, as opposed to someone that investigates fields of the green or wheat variety … I resisted the temptation to employ any lame jokes about me being ‘outstanding in my field’ and I suggest that you should too). It was an interesting and challenging career, and I have many fond memories of it that are not for this blog!

Apart from being mildly asthmatic (another stupid disease), I’ve been fortunate throughout my life never to have had any significant health problems prior to this. My interests include writing, reading, music (I play the piano and bongos … yes! bongos count!) and languages. So … that’s me … kind of.

So How is I at Where I's at? 

Me (far left) with my wife and daughter in December 2011
(for clarity, any picture of me with a beard is post diagnosis!)

In April 2011, on a very ordinary Saturday, my wife and I had planned to spend the morning out with our daughter.  On getting up, however, I felt somewhat ‘spaced,’ as if the world around me was floating somehow in my senses, and I had problems balancing. I bowed out of our morning’s excursion and settled down to watch TV on the couch. I had been working exceptionally hard for the preceding months, and I put it down to being fatigued, and had few complaints about the prospect of a morning in by myself, lounging in front of the TV watching The Office and Frasier.

On the Sunday, I didn’t feel any better. It was very hard to actually define what I felt – it wasn’t dizziness, nothing was spinning, I didn’t feel sick … and yet I couldn’t balance properly and the world still had a strange ethereal quality. I remember playing outside my daughter, shrugging off the symptoms as best I could, and scooping her up from the ground and lifting her into the air. As I did this, I was overcome with a very strong and sudden sense of losing my balance, and it caused me to stumble. This was the first point where I remember thinking: “Wow … something really is wrong.”

Monday passed with no change, and on Tuesday I gave in and went to see my doctor (something both the Irish and British mentality has always caused me to avoid … real men don’t go to the doctor’s lightly, and certainly not because they’re feeling a bit floaty in the head!).

My GP was very kind. I felt rather silly explaining my symptoms, particularly as they were so non-descript and I was clearly able to walk unaided into the surgery. However, he gave me a full examination, listened to me, and finally said (very honestly I thought): “To be truthful, I just don’t know what this is.”

He explained that the symptoms I was describing could be caused by any number of conditions, but it sounded as if it might be a condition called labyrinthitis, which is damage caused to the inner ear normally by some infection. He prescribed me anti-vertigo medication and signed me off for the week, and off home I went. Still no undue concern, and to be truthful I was quite pleased with the prospect of a week off work, as my recent schedule had been punishing. When I went home and researched labyrinthitis, a bizarre condition causing balance problems and giving the world a dream-like, unreal tint, I was convinced: that was exactly what I was experiencing.

My week off extended to two weeks, then a month, and then it turned into months. Rather than getting better, things got worse. My balance deteriorated to the point that I could not walk unaided – either by leaning upon something or (most demeaningly) holding my wife’s hand or shoulder if we went out. There was a marked decline in my memory and cognition – sometimes I couldn’t even remember what day it was. I would lose track of my thoughts mid-sentence, and I would try and recall something only to find (and it was very frightening) that the memory was just gone, nothing, just an empty space inside my head. I couldn’t follow the plot of films, conversations would exhaust me and confuse me, and I even stopped being able to read. I didn’t lose the ability to understand the words, but stringing them together into a coherent concept seemed simply beyond me. I also developed more physical symptoms. My lips would start tingling, as would my tongue and fingertips, and my left hand would at times stop working – I was unable to accurately control the movement of my fingers. For someone that can type and play the piano, for someone who had always had a good memory and clear, fluid recall of words and concepts, these sensations and symptoms were very disturbing, and I felt like a stranger in my own body.

Without a doubt, this was a pretty miserable time for me and my wife. It seemed that with one single stroke, everything I enjoyed doing was taken away. I couldn’t play the piano, I couldn’t type, and I couldn’t even read a magazine article. The sports I enjoyed were definitely out, and even the hum of the Xbox 360 (previously a frequent sound in my house!) stopped. I spent a lot of this time on the couch - distressed, frustrated and bored.

During all of this, I was still fairly convinced (and being treated as if) I had labyrinthitis. Moments of fear did creep in, though. I had bad reactions to the medication I was on. It caused insomnia, vivid and terrifying nightmares, and panic attacks. During this time, there was a growing sense that perhaps more was wrong than we knew. I remember one night waking from a nightmare, in a panic because I was convinced someone was in our garden, and jumping out of bed to confront this “intruder”. As I did, I stumbled because of my balance and nearly fell. I was struck by how pathetic this was. I slumped onto the bed, crying and sobbing. I’m a big guy – 6ft 6in and 19 stone – and here I was chasing phantoms in the night, and not even able to stand properly to confront them. My wife was immediately at my side with her arms around me. “What is wrong with me?” I kept saying, over and over, sobbing and shaking. “We’re going back to the doctor’s tomorrow,” she said with absolute resolution. “We’re going to find out what is wrong.”

Thus began what felt like a long and frustrating haul through the medical system. I changed GP and was sent for an ENT examination. I was given various tests and a CAT scan, none of which found anything conclusive. I was examined by a neurologist, who concluded (quite definitely) that this was neither labyrinthitis nor a neurological problem. I had been on a priority MRI scan list, but was then taken off. I was told I would need to wait for the next MRI appointment (now a non-priority) and this would take about nine months.

At this point, my wife and I decided to make a private appointment with an ENT surgeon (at this point, I was still clinging to the idea that this was something to do with my ears). This man was a game changer, a wonderful man. He gave me a full examination, spent time listening to my symptoms, and then sat down with my wife and I.

“This is not labyrinthitis,” he said. “We need to get you an emergency MRI scan.”

I could sense he wasn’t saying something, so I asked him what he thought it might be.

“I would rather not discuss what it may or may not be. There are some things we need to eliminate from the investigation.”

“I want to know,” I said.

“OK. From your age and the symptoms I’ve observed, I think that this might be the onset of Multiple Sclerosis. This is what we need to eliminate.”

“OK,” I said. “Thank you. I appreciate that.”

Despite what was a calm response, inside I was deeply frightened. This was the first time there had even been mention of multiple sclerosis. Multiple Sclerosis? I knew absolutely nothing about it, except that it was bad and made me think of wheelchairs. The only person I knew of with MS was Debbie Purdy, the “right-to-die” campaigner. I had seen her on Sky News a matter of weeks before, and I remember thinking flippantly: “God … can you imagine if it turned out to be that?”

As we left the surgeon’s offices, he warned me with a wry smile not to go looking stuff up on the internet – as if a warning like that ever works! I became an overnight “expert” in MS. My reading was improving, so I was able to siphon small portions of articles from the web and read them gradually. I still had no diagnosis, but I remember thinking on many occasions: “Wow! MS! Give me anything but this disease.” I started to develop rather rosy feelings of nostalgia toward the time when I had labyrinthitis … that word still has a warm feeling for me … safe, dreamlike, otherworldly, but most of all curable labyrinthitis (I sigh wistfully!).

The pace of things started to really pick up from this point. The ENT surgeon got me back on the priority MRI list, and I had this scan quite quickly. For some odd reason, I was referred back to the public ENT (rather than neurology) to collect my scan results. I remember a young doctor, poring over a radiographer’s report that he clearly didn’t understand, mumbling that he didn’t know why I was here in ENT. I looked over his shoulder and, in my newfound expertise, saw the words I was praying would not be in the report: demyelinating plaques. I turned to my wife and said to her: “Yup. I’ve got MS.”

This isn't my scan, but the white spots are the same demyelinating

plaques that were discovered in mine. Having a neurologist point out

and count areas of damage in your own brain is a definite "hit home" moment

Of course, the process of diagnosing MS is not quite as simple as I was making out, and I was referred back to neurology on the basis of this report. I was seen and examined again by the neurologist who had previously stated this was not a neurological problem, but this time he confirmed that the symptoms I was experiencing corresponded to the areas of damage in my brain. Despite a gnawing grudge I felt toward him for earlier clearing me, I have to say he was an exceptionally nice man. At one point, while he was explaining the MRI report, my wife started crying, and he stood up from his chair and gave her a hug. It was a bizarre situation that still makes me smile now. Here I was, sitting in his office, having just been told (and from an actual expert, rather than my own self-appointed punditry) that yes, this all seems to be adding up toward MS, and he and my wife were standing, embraced, and I was sitting on my own, like Billy-no-Mates, thinking: “Hang on … why isn’t anyone talking to or hugging me?! I’m the one that’s just been told this!”

More tests and examinations followed. Balance test, eye tests, prick tests (that’s with a pin, for goodness sake), plus the horrible ‘tickle test’. You know that one’s coming when the doctor asks you to take your shoes and socks off. I really hate that one. One time, while I was in the examination room with just the neurologist and a nurse, he tickled my feet with his keys (it’s always keys for some reason) and I got an uncontrollable fit of the giggles. Imagine it for a second: a 6ft 6in, 19 stone half-naked oaf lying on an examination table, looking down the barrel of an MS diagnosis, and he’s giggling like a baby, all because a doctor just ran a car key across the sole of his foot. It would have been less embarrassing had the doctor or nurse at least made some acknowledgement of my uncontrolled mirth, but no: they didn’t even crack a smile as I continued to giggle, titter, snort and wipe the tears away from my eyes.

During these tests, I was kept in hospital for the first time. I was also given a lumbar puncture – a rather frightful test where they draw out spinal fluid with a needle for testing. It was another humbling and rather pathetic moment. I had to lie on a bed, in the foetal position, so that my vertebrae were accessible to the doctor and his needle. I was frightened. My wife sat with me, holding my hand, and under strict instructions by me not to wince, grimace or gasp when she either saw the needle for the first time or saw them putting it into my back. It amazes me how, during these times, we need these childish comforts so much. A grown man, a private investigator, used to working in a challenging environment, with ex-soldiers and police as colleagues, and here I was, needing the comfort of having my hand held. I have to say, especially to anyone that needs to have this routine performed, it wasn’t as bad as I was expecting. It wasn’t pleasant by any means, but when is someone drawing cerebrospinal fluid from your spine with a needle ever going to be pleasant? It hurt, but not unbearably so. The pain was akin to the gnawing ache a man feels after he’s caught a well-struck football with his testicles, but with that pain being relocated to the small of your back. It was done, I got through it, and anyone out there who needs to have this done will get through it as well.

The following morning, the head neurologist came to see me with a nurse and two other doctors in tow. My wife hadn’t yet arrived in, so he spoke to me on my own. I sat cross legged on my bed and he sat on the edge of it. It was obvious he was in to tell me something. He said, in a very quiet and kind voice, that the evidence from the various tests was compelling (even though the results of the lumber puncture weren’t in) and that he believed I was having the first attack of multiple sclerosis.

Unlike with the ENT surgeon, there was less restraint on my part this time, and less of the old British stiff upper lip showed through. As he said it, I choked a single sob before putting my fist to my mouth and catching myself. There was always a part of me that didn’t believe it was MS, that it couldn’t be MS, and to hear the head neurologist say ‘Look, we don’t even need the results of the final test’ was quite shocking. He paused, I was able to compose myself, and then he explained I would be kept in hospital over the coming days to have a course of steroids administered to reduce inflammation in my brain.

Thus, from that point we arrive at today, almost a year and half later. I’m still not working (I was subsequently laid off for medical reasons by my employer), and my symptoms have changed and evolved. By and large, I’m better than I was back then. My balance is much better, although I still don’t feel completely right. However, fatigue and pain has been very difficult to deal with. I take a betaferon injection every second day, as well as regular paracetamol and painkillers and some other optional supplements. I had been on anti-depressants, largely to regulate my sleep patterns which had become very erratic, but recently chose to come off those. I also recently started physiotherapy, which I’m hopeful will reduce both the pain and fatigue.

I still don’t know how much it has sunk in yet – when I feel well, I still sometimes find myself doubting the diagnosis. When I feel bad however, either very “MSey” (I will try and define this in another post) or in a lot of pain, the weight of this diagnosis can be very heavy indeed, and many factors such as loss of a feeling of control in my life, loss of my identity and loss of my social life (to name a few) can weigh very heavily upon me.

I am, however, generally positive about my future and about the life changes that have been forced upon me. I try and view this diagnosis as a new beginning. My career, for example, was very special to me, and was part of my identity. I enjoyed the work, the excitement, the mental challenges it gave me, and I liked the status, if you like, of being a private investigator (and a good one, if I may toot my own horn). However, it came at a cost. The work/life balance was hard to maintain, and it could be physically and mentally exhausting, and it was a difficult line of work for a family man, as I had become. So this can be a new beginning for me. I’m confident I will work again, but in a new field that will give me new challenges and new enjoyment. As it will need to something that is manageable for someone with MS, I’m confident that it will also be something more manageable for someone with a family. I have a few ideas, but my concentration right now is on improving my health and getting back to as well as I can be.

I will write more specific articles in the days and weeks to come (shorter ones, you might be glad to know!), detailing my symptoms more in depth, my experience of adjusting to this new me, and of course various articles and references that should be of interest.

If you got all the way through this post, thank you for reading! I really do appreciate it, whatever your interest in MS or my blog might be.

My wife’s just brought me a cup of tea and a muffin, so I believe it’s time for a little break.

Thank you again.

Eddie

Regardless of how the past year has been, or what the future holds,
 I know for a certainty that the next five minutes is going to be heavenly