I just… felt like Running.

“Nobody ever mentions the weather can make or break your day”

It’s great drying weather out there. The clock’s have sprung forward and it couldn’t have come quick enough. The inevitable “There’s a great stretch in the evening” memes are more than welcome this year. Honestly, it’s felt like a Game of Thrones type of Winter with no end in sight. Being Irish, we should be prepared for all kinds of bad weather yet we batten down the hatches at the first sight of rain and I’m as guilty as anyone.

Yesterday saw the first real sunny day of the year and I knew I had to capitalise on it. Between the constant rain and snow, the opportunities to go for a run have been few and far between. The less active I am the less active I want to be. Inactivity creates lethargy. First thing’s first, I put the washing out on the line to dry; this was too good an opportunity to miss. No sitting in the kitchen drying on the clothes hoarse for this wash!! Then, I got my running gear ready, done the obligatory few minutes of stretches to get the blood flowing and body heated, and off I went.

Even as I set off I had no idea which route I would take. I was just glad to get out. For the day that was in it I decided to run to Clontarf. I knew even before I got there that I would see family’s out and about, with their children and dogs, cyclists, other runners, the abundant variety of birds hovering on the shoreline and, of course, the Poolbeg Chimneys majestically overseeing it all. It was a no-brainer really.

I hadn’t planned on it, but about 15 minutes into the run, I started to get notions. I’ve always intended to go running on the beach at Dollymount Strand but I’ve never got round to it. The furthest I had run, from my house, was as far as the Wooden Bridge which is a good 5km into my run but it’s at least another km further to the beach. That’s an achievable goal for me to reach, still the problem would be the return home. My fitness is not at that level yet and I’d be foolish even to chance it.

A while ago I got an email from a girl in work, Jill. In the email she asked for sponsorship for a 10km she was running to raise money for MS Ireland as her sister had been diagnosed a number of years back. I knew straight away the email was sent to me in error as we didn’t really know each other back then and there was no way she could have known about my diagnosis at the time. Anyway we got chatting as I thought it was a strange coincidence that I received an email about MS by mistake. Naturally, I donated. Now I chat to Jill regularly in work. Not only that but she has convinced me to sign up for the Dublin City Half Marathon in September in aid of MS Ireland. It’s funny the impact MS has had on me; both good and bad.

Feel free to join us, the more the merrier 😉 –>

http://sseairtricitydublinmarathon.ie/race/dublin-half-marathon/

So there I was, yesterday, as I reached the Wooden Bridge at Clontarf; “Feck this, I’m training for the Half Marathon. I’m going for a run on the beach!” Sometimes you have to act the fool. By the time I got to Dollymount Strand I had pins and needles in my right foot and couldn’t feel a thing. The sensible thing to do was to stop and walk until the feeling returned or at least turn back. I get very stubborn when I run though. I ran the length of the beach and turned off to run toward the Bird tree-top sculpture at Saint Annes Park. The pins and needles persisted so I start running faster even though my energy was rapidly dwindling. Luckily, as I ran faster the feeling soon came back to my right foot and I managed to continue jogging albeit at a much slower pace.

Me and my pals Peter and Gar at the Bird Tree-top at Saint Annes Park: Sept 2016

I had threatened to do this run for such a long time but had no intention of attempting it when I left my house yesterday morning. I was in no way completely ready to do it. But I wanted to stay out while the sun was still shining and try get Vitamin D naturally for once. The sun once was a deterrent for me going outside, now it’s the protagonist. I was being both foolish and stubborn and I regret nothing.

I kept thinking on the home straight about Homer Simpsons attempt to jump Springfield Gorge “I’m gonna make, I’m gonna make it, I’m king of the World!”. Of course, Homer didn’t make it (click here for the link) but as with most things in my life there always has to be a Simpsons reference to fall back on. I finished the run in 1 hour 48 minutes and 25 seconds. I practically crawled for the last few kilometres but I did it and I’ll do it again. Just as inactivity creates lethargy; energy creates energy. I done my stretches when I got home and felt a few pains today but nothing I can’t handle. I even went for a walk back to Clontarf with Michelle and Oliver 🙂

I have set up a charity page for the Half Marathon for anyone who would like to donate; https://give.everydayhero.com/ie/half-marathon-for-ms

My MS Update

I have had to go back to the hospital, for blood tests, every month since last September when I started on my new medication. My white blood cells are not at the level they should be which means I’m more susceptible to infection. I may have to consider changing medication again if it persists. All part and parcel of having a chronic illness I suppose. My next MRI is booked for May so that should tell me more, particularly about any additional lesions; which I suspect there are. In which case I mightn’t have a choice but to change meds. I’m lucky that my mobility hasn’t been affected since my initial diagnosis, however, there are other constants like spots in my vision and fatigue that just don’t go away. Running, I find, is the best way way to alleviate these.

Yesterday’s run is the most I’ve pushed myself since as long as I can remember and I’m really feeling the benefits of it.

“Nobody ever seems to remember life is a game we play”

#KBYerrr

Mo’ Lesions, Mo’ Problems

I knew on the walk to the Mater Hospital today what the name of my latest blog would be. Still though the news, although unsurprising, was unpleasant to hear. “Your most recent MRI was discussed back in May and 3 additional lesions have appeared since last years MRI”. I kind of guessed when they moved the appointment forward from November to July that something was up.

Bummer. I like to think I know what I’m in for with MS but I really don’t. No one does. While the majority of my lesions are quite small, they’re on the increase and without me visibly relapsing I’m not going to know how they affect me. All I can do is try keep them at bay. Which, as per my previous blog, I haven’t been very consistent at doing. Copaxone was always going to be a temporary aid at best. Its side effects were minimal for me but that meant higher risk of relapsing or increased chance of further lesions. Unlike other medications, which I could have chosen with lower risk of relapsing but much more extreme side effects, Copaxone in no way affected the reproductive system. That was a deal-breaker for me and although it hasn’t prevented further damage with respect to the spreading number of lesions on my brain I just have to look at my son Oliver to know I 110% made the right decision.

I’ve never played chess so I don’t think I could do an accurate comparison. What I do know is that it’s a game won with the right strategy. I have to change my approach. I’ve known this for a while. It’s a shame I’m being very reactionary. I need to be more proactive. These are generally buzz words I save for the office but it’s true… it’s damn true 🙂

I sat there today, with my wife by my side, as my balance, vision & reactions were checked. Back to basics really. Questions asked of me that have been asked plenty of times before. The answers seldom differ. Still aware there is something underlying in the background yet to manifest itself. Still occasional spots in my vision, still slightly unbalanced, still infrequently dizzy, still regularly fatigued. Still feeling fine. It was recommended that I change my medication. I expected as much.

Gilenya and Tecfidera are what I have been advised to choose from. I’ve set up a Facebook page, MSers United, for those I know with MS and have asked those in the know to provide feedback on both drugs. Also my MS nurse, Jacqui, will send the info on both out to me next week. I’ll go through them in detail with Michelle, as we have done before, and will probably have to arrange a meeting with Jacqui to discuss the next steps. For those who have read my Juggernaut blog you may recall Jacqui was out on indefinite leave earlier on in the year. Randomly I bumped into her on Clonliffe Road, just around the corner from where I live, a few months back. It was a particularly sunny evening and she had taken a detour walk home from work to get some extra time in the sunshine (putting her own advice into practice) when I saw her. It was such a comfort talking to her, seeing she was ok, and knowing she was back in my corner.

I have made a fair few changes since diagnosis but I’ve known for a while the strategy has become stagnant. I don’t want to bombard myself with changes as I know I won’t stick to them. There’s a few things that I want to do and others that I need to do. I need to start practising yoga; an exercise for both body and mind, I really need to get up off my bum and just do a class. There are plenty of youtube clips too so I’ve no excuses. I’m getting repetitive but I need to be more disciplined with my diet and more consistent with regards to exercise. I paid to join a running club in work and I rarely go. The doctor also advised things like massages and rekhi are worth looking into but it’s down to personal preference. A common denominator is the intention to make you feel relaxed. Michelle got me a ukulele for Christmas which I’ve barely touched. I want, and I think need, to learn a musical instrument. The aim is to use parts of my brain that are usually left idle. Whether or not my brain will be able for that is another question. I was also asked today how my memory retention is “Long term good, short term bad” – I wish it was the other way around. So I do wonder how competent I will be at learning something new. I need to see this as a challenge rather than a deterrent.

I think I’ve set myself enough goals for the time being. Feel free to get in touch with any advice or recommendations. The strategy will have to change regularly. After all, I’m only a pawn in the game…. we all are.

Someday, everything is gonna be diff’rent
When I paint my masterpiece

Bob Dylan

 

#KBYerrr

 

 

 

A Disturbance in the Force Part Deux: Wherefore art thou Thumper?

Thumper greets you like a naughty mate. The one who likes to steal and get you in bother. The one you can never bring yourself to hate.

It was a rare sunny Friday in April. I was off work to focus on college but was also booked in for an MRI in Smithfield. I got up at my normal time, took my injection and enjoyed the walk down to the LUAS stop at Busaras in the sunshine. I jumped on board the LUAS and got a kick out of having a nosy at all the “characters” getting on and off at the Abbey and Jervis Street stops. Upon arrival, I barely had to wait 10 minutes to be brought in for the MRI scan. “Please complete this form Mr. Byrne” said the lady behind the desk. I barely had my name complete when I got called in. “I can complete the rest” the technician told me. Happy days, let’s get this show on the road.

I was told to disrobe into only my boxers and given a hospital gown. This was not like the previous times when the MRI was done with me in my jeans and t-shirt. This must be a serious one, I thought. I sneakily kept my socks on though. As I lay down the technician said “Right we’re just going to inject you with water and then half way through we’ll inject you with a dye”. Lovely. “How long is this going to last?” I asked. “All going well about 50 minutes” he replied. I had gone through a similar MRI around the same time last year but didn’t realise this was going to be just like that until the very moment I was about to go in to the machine. Then, to make matters worse, the technician plugged my ears and covered my head and chest so that I wouldn’t be able to move in any way whatsoever.

As the realisation began to set in that I was going to be laying like Hannibal Lecter for the next hour in very claustrophobic conditions panic started to take over. Soon, within half a foot of my restrained face, the roof of the MRI machine was staring back at me. No earphones to listen to music or mirror to see what was going on outside and take my mind of things, as had been the case previously. The MRI began TICK TICK ERRRRRRRR It was just me and my thoughts and they weren’t exactly full of joy or positivity. I was expecting Thumper to show up any second. He would have been welcome. Anything to take my mind off things. Maybe he might even show up on the MRI results. I couldn’t lay here for an hour like this. TICK TICK ERRRRRRRR I decided I would try to practice mindfulness to take my mind off things and perhaps pass the time. Sure I done at least three 10 minute sessions on an app a few months back; I’m practically an expert.

Right let’s see how this goes again. Relax, let go of everything. Breath in through the nose and into the lungs until they’re full of air. Now out through the mouth. I think that’s how it goes. TICK TICK ERRRRRRRR I’ll keep at it. In through the nose and fill up the lungs and exhale. And in through the nose, thump thump thump that’s just your lungs filling up, that’s just the engine struggling, that’s just a carp swimming around your ankles. Ah there ya are Thumper ya little bollix. Classic Simpsons reference. Where have you been? I can’t tell if it’s you or the bloody MRI machine causing the thumping in my ear. It’s only in my left ear so it must be you. No response no? I’ll keep up trying mindfulness if you’re going to continue to make sporadic appearances only to ignore me. Relax. Breathe in. Let go. In through the nose. Out through the mouth. You are a strong confident woman thump thump thump.  If you’re going to start annoying me you have to stay for this whole thing. The noise from the scan had stopped.

“Keith we have to stop so we can inject you with the dye, should only take a couple of minutes”. Between being in such an enclosed space, having plugs in my ears and feeling imprisoned, Thumper began to go into overdrive. The initial injection had numbed my arm partially so I couldn’t even feel them injecting the dye. It was probably only another half an hour in the MRI but it felt like a lifetime. TICK TICK ERRRRRRRR TICK TICK ERRRRRRRR TICK TICK ERRRRRRRR thump thump thump What are we doing after this? I dunno about you pal but I’m going into the library I’d prefer if you didn’t join me. Well well well, you’ve changed your tune. A few minutes ago you were going to put my face on the side of a milk carton because you missed me so much. What like the film Big or Blur’s Coffee & TV video? Exactly. You’re a hippocrit! It’s hypocrite and maybe so but the MRI is finished now and you need to feck off again.

The MRI lasted pretty much bang on 50 mins as advised. The technician said it went well and there was very little movement from me so they didn’t have to do any scans more than once. That was a relief. I told him I had a history of boogie’n down in an MRI. There was a couple of unintentional leg spasms but that was perfectly normal and probably just down to nerves as much as anything. All that lying down really drained me. My Dad’s office was only down the road so I hopped on another LUAS and called up to him. He had a cup of tea and cake waiting for me on arrival. Just what I needed to give me the energy to get a bit of study done. I went to the library and Thumper followed. He hasn’t been himself  since the MRI though. Maybe he got everything out of his system. He makes the odd appearance but he’s much less of a nuisance these days. The sleepless nights still occur regardless but now I can lay there in peace rather than constantly tossing and turning trying to shut the little shit up.

I met with my neurology nurse on Monday. I missed the last appointment in November due to sheer forgetfulness. I like to blame MS for my absentmindedness. These appointments are too important to be missed so I made sure I was there with time to spare. I love talking about what I’ve been learning over the last year or so and getting feedback be it constructive or otherwise. The MRI results showed no change from the last one which is the best I can hope for. We discussed the recent Panorama documentary on BBC One where people with MS had made a complete recovery thanks to stem cell research. It’s great to see such progress being made but we both agreed that it’s not necessary for me to look into going down that route. I’m my own best chance of recovery for now. I told the nurse about Thumper. I think the last time we talked I had so many other symptoms I forgot to mention him. She told me that, from how I described it, Thumper isn’t an MS related symptom as he comes and goes quite regularly. MS symptoms are generally much more prolonged but still people with MS have other issues just like anyone else. My Doctor had ruled out tinnitus which seemed to be the only other explanation. Either way Thumper seems to be gone for the time being. There is Balance in the Force once again. As with anyone you fall out with or lose touch with I said I wasn’t sad to see him go; but I was only pretending you know.

“It was in love I was created and in love is how I hope I die”

Paolo Nutini, Coming Up Easy

#KBYerrr