Hello Sunshine

“Julius Caesar and the Roman Empire couldn’t conquer the blue sky”

Lady’s and gentlemen of the class of whatever year you’re reading this in….

It’s December already, it’s getting pretty bitter out, most days are overcast at best. Winter is here and sunlight is more and more scarce. Vitamin D cannot be directly received from sunshine at this time of the year. This is a concern for me. There is a definite correlation between lack of sunlight and MS. It is much more common in colder climates with little sunlight. This time last year is when my symptoms started to really show. And because I’m in my final year of college until May, finding time to take advantage of the rare sunshine is even tougher. Exercise is a good substitute but I’m finding less time to do that too. Working full-time and studying part-time is proving tough especially at this time of year.

Lack of sunshine used to never bother me in the slightest. In fact I welcomed it. I used to think the sun hated me. I had a few forgettable sunburn experiences as a kid that I would try to avoid the sun at all costs. When avoiding the sun wasn’t an option I would lash on the suncream before going outside.

Baz Luhrmans Everybody’s Free to Wear Sunscreen is a very inspiring and educational piece. If you’re not familiar with it or haven’t listened to in a while give it a go. One thing I now disagree with Baz on though is his encouragement of applying suncream. Madness, I know. But let me explain myself. Of course suncream (screen/block) is very useful but as I’m learning about most things these days it should be applied in moderation. Whenever I’m in a hot climate or on a rare sun-kissed Irish day I lash on the suncream.

“The benefits of sunscreen has been proved by scientists. Whereas the rest of my advice has no basis more reliable than my own meandering experience”

When I was told it was evident that I was showing the first symptoms of MS I was advised to get lots of sunshine as it is the best way for us to get Vitamin D. Straight away I thought “not that bastard sun, he hates me!”.  But I did as I was told. I went for walks by the sea each day. This, apparently, is also good for your balance which I was struggling with badly. I made sure the sun got onto my baldy head at the very least but also I felt getting the fresh air and having the sea breeze in my face was just as beneficial. Even as the weather improved my doctor advised me not to put on suncream before leaving the house and allow my skin to absorb the sun even for 10 or 15 minutes a day. I still feared getting burnt but it was great advice. I actually feel better when the sun hits my skin probably because I know now how good it is for me. When I eventually went back to work a few people thought I was taking the piss being off. I’d come back with a bit of a tan and lost a bit of weight from all the walking. Turns out the sun was my friend all along. I just didn’t realise. The sun, as with most friends, is great in small doses but spend too much time in their company you can end up burnt 🙂 Everything in moderation.

 
Hello Sunshine: Come into my life 🌞

Still though, I did spend most of this years sun holiday by the pool under the umbrella covered head to toe in suncream but I made sure that I got a bit of natural sun before doing so. I also take daily vitamin D supplements as I know a lot of people do. I’m lucky enough to be prescribed these on my Long Term Illness card so they cost nothing. It’s recommended all people living in climates similar to Ireland’s should be taking vitamin D supplements to compensate for the lack of sunshine particularly in Winter time. 

It’s a great feeling the sun hitting your skin directly even if only for a brief period. There’s so many natural things about the world that I’m only starting to open my eyes up to since my diagnosis. I find myself treating MS as a sort of awakening. I wonder sometimes how I wasn’t like this before and why only now when faced with a genuine challenge do I see the world so differently. The main challenge I’ve found recently is how to put a positive spin on everything. Perhaps it’s not always possible but I don’t be far off seeing the positive side to most scenarios. Brief mindfulness sessions have helped but I don’t practice it enough.

A lot of lifestyle changes I’ve made since being diagnosed with MS haven’t felt life changing as I have implemented them slowly and not tried to change everything all at once. I try not to eat too much processed food and I have a lot more fruit whereas before I would have crisps and a chocolate bar. A lot of dairy free and gluten free items in the shopping trolley. I’ve cut back on red meat. I’m loosely following certain diets that people with MS highly recommend. Again, everything in moderation. I try to go out walking or for a run on my lunch break in work. This is not always possible and sometimes I lack the necessary motivation but I try not to be too hard on myself when I go short periods without exercising. I generally feel a fuzziness coming back to my brain when I go for periods of being idle so I use that as my trigger to get back on the horse.  This is how I try to live my life now, I know there’s a lot of people who live much healthier ones. For me, it’s a vast improvement from before diagnosis. I still know that there’s something lying in the background that could raise it’s ugly head but I’m confident that if I keep going the way I am a relapse is a long way off.  It’s just a reminder that we’re all the masters of our own destiny. Or maybe we’re not. What do I know.

To quote Doc Brown in Back to The Future 3: “your future hasn’t been written yet, no one’s has. Your future is whatever you make it, so make it a good one.”

But trust me on the sunshine.

#KBYerrr

Chimneys, Rain and Hope

I was planning on writing this next blog about hope, what it means to me and where I get mine from. But with all the shit that’s been going on in the world I just didn’t see the point over the last few days. Not only that but the weather has been atrocious. There’s a direct correlation between MS and a lack of vitamin D aka the sunshine vitamin. I haven’t been eating as well as I should and certainly haven’t been getting the exercise I need either. All in all not having the positive outlook I pride myself on. This might sound silly but I had been getting a sense of hope from two chimneys on the edge of Dublin. Let me explain why 🙂

Last year, Michelle’s sister, Christine was talking to Ivan Yates on TV3. There was news that the ESB were going to knock down the Poolbeg Chimneys at the edge of the city as they are no longer of any use. This meant very little to me at the time but Chris told Ivan that she really didn’t want to see them knocked down. She had spent some time living in London and whenever she flew back to Dublin they were the first things she would see to remind her she’s home. This inspired one of my greatest ever tweets:

It was confirmed the chimneys were going nowhere. I begun to realise that, from where I live, they are nearly everywhere I look. Michelle and I started to take selfies whenever we were out and we passed them by; which was becoming more and more regular. When I was told exercise was one of the best ways to recover from my first MS attack I went on daily walks as far as I could to get both vitamin D and to re-discover my self-confidence. After a few weeks of long walks I noticed that I’d been going as far as the chimneys each day. I would walk from my house until I was facing them directly from the promenade in Clontarf. It wasn’t intentional at first but I started to say to myself each day “I better go see my pals”. They became a welcome addition to providing me with motivation. Even when I went  back to work, I ‘d never noticed before that you can see them directly down the quays from the office. On the first morning back I was walking across the Samuel Beckett Bridge and could see them in the distant sunshine as if they were saying “You look after yourself now, we’re not going anywhere”. I don’t know why but seeing them that morning was almost comforting.

Back to today and it’s hard to appreciate and find hope from large inanimate objects when the suns not shining on them. I know Ireland qualified for the Euros so not all is bad but within myself I was struggling to see hope or motivation around. I put the wet gear on this morning for the walk to work. The only thing inspiring me was the thought of staying dry. Storm Barney soon put an end to that.

So there I was en route to the office getting soaked. Walking past the Royal Canal towards North Strand even the ducks and swans had fecked off and I didn’t blame them. Then I saw this young girl. While I, and everyone else, was in a hurry to get away from one of the wettest mornings you could imagine there’s this little kid no more than 7 or 8. She was making her way to school and was fully kitted out in her rain gear; wellies, rain-jacket, umbrella, the lot (all with Frozen logos on them, as standard). Rather than sprinting to the classroom, like her teachers and her peers, she was jumping two-feet at a time towards the schoolyard. Each splash in the puddles bigger than the one before. Not a bother on her. Well she put the biggest smile on my face. There was I miserable as anything because I was inconvenienced by the rain and there was she taking full advantage of it. Hope restored.

“Positivity. It is the way for me. It is truth. It is youth.” Damien Dempsey, It’s All Good

#KBYerrr

 

 

 

 

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

#KBYerrr

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”

#KByerrr