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


I have the power

So yesterday I attended my first “MS day”. I wasn’t apprehensive about going but more curious as to who would be attending. I was concerned for Michelle. She’s been so brilliant and probably knows more than I do now about MS. But still I didn’t want her seeing those who are affected worse than me and worrying that’s what the future has in store for us.

The group of around 30 consisted of people of all ages. All with different experiences of MS. I think Copaxone (my medication) was the common denominator. I still consider myself to have only had one clinically isolated episode although it lasted for months. So I really don’t think I have had to go through what many others in the room have been through or are currently going through. It was difficult for the most part to tell who were the ones with MS and who were there in support. Michelle was asked a couple of times when she was diagnosed. She would say she was here because of me but she’s been with me the whole way so can probably talk about the journey better than I can.

All in all it was a positive experience especially for Michelle which was important to me. I would like more emphasis on lifestyle factors such as diet and excercise as I know in my case anyway that’s played a big factor in both getting sick and recovering from my first attack. There was a piece on mindfulness which was interesting as it applied to anyone really. Although when the lady giving the talk asked us to close our eyes and listen to our surroundings I was afraid i was going to let a loud fart so kept laughing to myself. I need to take these things more seriously.

One part of the day that really struck me was after lunch when we sat in a circle facing each other. We were asked to put up our hand if we felt we had lost our identity because of MS. To see men and women of all ages put up their hand up was crushing. I suppose I hadn’t thought about having my own identity until now. I know we have all had different experiences of MS and it’s still new to many of us but I’ve thought to myself if I’m not going to start trying to be the person I want to be now when will I? I kept my hand down.

The motivational speaker at the end was good. He didn’t have MS but had overcome other demons. He got across some really good points. One being that how you dress affects how you feel about yourself. I’ve taken a mental note of that. He did say there was one thing he wanted us to take away from his talk but I can’t remember what that was. I like to blame MS for my poor short term memory.

My favourite part of the day was a talk called be your own superhero. I’ve already tweeted the speaker to say who I want to be:

Finally I love a good quote and Emma who gave the “superhero” talk had a couple for us. I think they were taken from poems. Immediately I had a line from an Aslan song come to my head. So to quote the mighty Christy and the boys:

“This is your life, your time, you gotta make it”