Agreeing Terms

A year ago, I met with a neurologist who told me I was going to relapse. It was only a matter of when. This was less than a month after being told that it was evident I had MS. My symptoms hadn’t improved since then so how could I relapse from something I hadn’t even recovered from? But what do I know? He’s the expert, I’m not. So I left the neurologist not knowing when I was going to get back to normal and even at that chances are this is going to happen to me again. Only thing is the next time the recovery wouldn’t be as complete. Each relapse is meant to chip away at you so even once you feel like you’ve recovered the everlasting damage is already there. This is something I found very hard to accept. This is something I still find very hard to accept. This is something I won’t accept. These were the terms of MS, not my terms.

I may appear to be in denial saying I won’t accept what an expert tells me is my fate. But as I have discovered MS is too complex to predict and abide by rules. Each case is unique (MS Snowflakes). I very nearly accepted my fate. I knew no different so what was there to question? Michelle booked me in with a nutritionist and bought a book online by Australian Professor George Jelinek called Overcoming MS. I didn’t think MS could be overcome. I thought Jelinek was just a pure optimist trying to make a few quid. Once I read his story though I knew he was onto something. His mother had died because of MS and then he was diagnosed. Clearly a learned man, he done extensive research altering his diet and upping his exercise levels. He has been relapse free since 1999. This really gave me hope.

I can’t say I’ve read Jelinek’s book thoroughly back to front. A lot of it can be quite in depth and I don’t claim to have the knowledge to understand what he’s talking about some of the time. The basics though are simple; Eat as natural food as possible (if food can go bad it’s likely to be good for you, if it doesn’t then it’s probably bad) and exercise regularly exerting proper bursts of energy. These are very natural ways to look after ourselves regardless of whether or not someone has a continuous illness. I’m currently trying to stick to a routine of preparing my own food for the day and exercising at a pace that suits me. In addition I take the drugs and vitamins prescribed to me. These are my terms and between these terms and the terms of MS we’re going to meet somewhere in the middle.

The Tale of the Three Brothers is a story within the Harry Potter World. Three brothers cheat Death using magic and as a result Death grants each brother a gift. The first brother requests a wand more powerful than any in existence; the Elder Wand. After killing an enemy, the first brother is murdered in his sleep and the wand stolen from him. I see Death as MS and Copaxone (my medication taking 3 times weekly by injecting) as the Elder Wand. A powerful asset but not reliable enough to hide me from MS forever. The second brother is given a resurrection stone to recall loved ones back from the dead. Although, to his devastation, they do not belong to the mortal world and he kills himself to be with them. The resurrection stone to me is exercising. Although extremely rewarding, it’s not something I will be able to rely on for my whole life. There will be times when it may not be an option for me as can happen to most people. There are many people who exercise regularly yet MS still creeps up on them.

The third brother asked for a cloak of invisibility to allow him to hide from Death. For me this represents good nutrition i.e. eating healthy. Exercising and prescription drugs are definitely beneficial but I can’t depend on them to be there in the long-run in the same way I can depend on my diet. Not that I eat extremely healthy day in day out (moderation) but it’s something I’m always going to be mindful of. These are the terms I am willing to agree with MS: “I will maintain a healthy lifestyle; taking the prescribed medication, exercising regularly to the best of my capability and sticking to a diet that I feel is good for me. And in return we will meet one day in the same manner Death meets the third brother.”

Though Death searched for the third brother for many years, he was never able to find him. It was only when he attained a great age that the youngest brother finally took off the Cloak of Invisibility and gave it to his son. And then he greeted Death as an old friend, and went with him gladly, as equals.

The Tales of Beedle the Bard by J.K. Rowling



George Jelinek’s response to this blog 👍🏻


I’ve been lost, I’ve been found, but I don’t feel down

Well this has been a very positive week. I’m really glad I started the blog. The feedback has been very humbling and has motivated me even more than I had been already. Thanks for all the support. It’s really uplifting. Pat on the back for everybody 🙂

A couple of things in particular that I find myself repeating over and over is the importance of a healthy diet and regular exercise. It seems so obvious but it really got me on the road to recovery after months of uncertainty. Initially when I went to my doctor last December I’d been told that I had vertigo but after a couple of weeks on medication and lots of rest the symptoms hadn’t subsided. The doctor booked me in for an MRI straight away just in case it was something more. There was no waiting around as it was only a couple of days before Christmas and who wants a brain scan for Christmas??

When the MRI results came back suggestive of MS it was something I found very hard to register. I’ve seen the worst case scenario of MS first-hand so of course that was the first thought that came to my mind. This was in early January and I had exams coming up. I had plans to go to the library and try to study after the doctors but once I got the MRI results back I knew I had to go home and tell Michelle. The doctor had told me that many MS sufferers live long healthy lives so I relayed that back to Michelle and we clung on to that until we knew more. At this stage I’d been out of work so much that I had to go see the company doctor who certified me out until February.

Towards the end of January we met with the nurse in the Institute of Neurology. She told me that what I was going through was called Clinically Isolated Syndrome and was the first attack of MS. At this stage there was no telling when the attack would end. We were told it could last up to a year. It sounded more like a siege than an attack to me. But what do you do when you’re attacked? You fight back. As this was still at an early stage they were reluctant to put me on drugs but I was advised that keeping active and getting proper sunlight should speed up the recovery. These were the ways for me to fight back. I was also booked in for a lumbar puncture. I had no idea what a lumbar puncture was. When I did my research and learned it’s a spinal tap I was both scared and intrigued. I love the film This is Spinal Tap but this was in no way going to be as funny. An extraction of fluid from the spine as it’s the same fluid that’s in your brain didn’t sound like much craic.

February came and exams were passed but the symptoms persisted. The company doctor told me not to go back to work until May. This really gave me the opportunity to concentrate solely on getting myself well again. I ended up having to go for two lumbar punctures in the space of a couple of weeks. The first was done without the aid of an x-ray but they were unable to extract any spinal fluid. Not a memorable experience. The pain went up to 11. So when I went back and had it done under x-ray I was very apprehensive.  This time though it went according to plan. My folks were aware of the situation at this stage. My dad collected me from both lumbar punctures and I was brought to the folks house and spoiled like only they know how (yes I know I’m in my 30’s).

I kept going for walks each day. My confidence was building slowly but my balance and vision still wasn’t right. When out walking I would always need to glance left and right a few times before I had the confidence to cross a busy road. Even now I’m still very cautious crossing roads as I don’t trust my awareness of my surroundings as much as I used to. 

My Granddad Shay was awarded an Unsung Hero of Dublin certificate in 2008. I moved into my house in 2010, the same year he passed away. I proudly have a copy of his certificate hanging up in my sitting room. I would look up at it every so often. If it took me a good few seconds to readjust my focus and see the certificate properly then I knew I was making no improvement. For months my Granddad’s certificate was the one thing I would always look at in the hope that I would glance at it and not have to wait for my brain and eyes to adjust themselves before I could register what exactly I was looking at.

Meanwhile Michelle booked me in with a nutritionist who reviewed my diet and put me on vitamins. I was told to cut back on salt, wheat and dairy. The nutritionist looked at my tongue and knew by it’s colour that I wasn’t absorbing nutrients properly. Adjusting your diet takes both time and discipline but within a few weeks of following the nutritionist’s instructions and keeping myself active each day I felt a massive improvement. The delay in seeing what I was looking at whenever I glanced at something had almost gone. Looking at my Granddad’s certificate without having to wait too long for my vision to adjust itself  was the first indicator of the blurriness subsiding. I knew the nutritionist was onto something but I never copped before how your diet doesn’t only affect the size of your waist but everything about you.

By mid-April I started back working on a part-time basis and by May I was back full-time. I attended an hour long program in work this week called building resilience. The speaker used the analogy; you wouldn’t drive a car down to Cork in 2nd gear because you know you would wreck it. It will probably still work but not as well as before. So why put stuff into your body when you know it will do you damage. It was something along those lines anyway. I’m sure you get the point.

Thanks to everyone who’s been in touch with me so far and shared their own story in return. If I’ve learned anything since my first blog it’s that we all have our crosses to bear.

“I’ve been lost, I’ve been found, but I don’t feel down” Oasis – Half the World Away