Wild is the Wind

I recently signed up for a 10km jog in Dublin city centre on November 22nd. This is the first organised run that I’ve ever signed up for. And it’s given me some well needed motivation. The jog is called Run in the Dark. So that’s exactly what I did this evening – went for a run just as it got dark. I can’t remember the last time I’ve ran outside after the sun’s gone down. It was fairly nippy out yet I can’t say I’ve ever come back from a run having regretted it. I’ve only ever regretted the missed opportunities.

Initially I planned on running approx. 5km; to the seafront in Clontarf and back. Although once I got going I didn’t want to stop. I didn’t want to do the full 10km (that could wait until the 22nd) but I knew if I ran to the Moai statue (check out my MS Snowflakes blog) and back it works out at 8km. Running there and back is a real achievement for me. I recall back in early 2015 when my MS symptoms were particularly prominent I would walk here and back everyday as I re-gained my confidence in walking and my balance. To now be able to run to somewhere that was once an endeavour to walk to gives me a real sense of accomplishment. I done a circle of the statue as I turned back to run toward home and gave him a little wink as I did; good seeing ya pal ūüėČ 

And then, of course, it hit me BOOM! Naturally with the wind behind me I was always going to run a bit faster than normal. I never questioned it. It wasn’t a blustering wind so I wasn’t too conscious of just how harsh it would be on the way back. So with the wind behind me I was feeling a lot more confident on the outward part of the run than I did on the return. I gave the run toward home my best shot but the lady on my running app (Endomondo) was constantly reminding me every kilometre that I was going slower and slower despite my conscious effort to maintain the same pace as I had before.

It dawned on me that MS is a lot like the wind. What occasionally can be your closest ally fuelling you to reach a goal will, without forewarning, become your arch nemesis. At times it’s right behind you giving you that extra push to reach your destination. Yet in an instance it can change. The very thing that was driving you is now holding you back forcing you to try even harder. And even though you’re trying your hardest you feel like the destination is getting further and further away from you.

I made it home in good time despite the winds attempts to push me back. As I got closer to home (and further away from the seafront) the wind began to subside. When I’m only a short distance from my house I use all the energy I have left to sprint for the remainder of the run. This causes my head to start pumping until I catch my breath again. I find these bursts of energy really uplifting so I always try end a run with a short sprint.

My MS Updates 

With news in July of additional lesions on my brain discovered in my most recent MRI I had to reassess my whole approach to how I’m fighting MS. The medication I was on (Copaxone) had to be discontinued for me. After discussions with my MS nurse and other MSers I decided to move onto Gilenya. One tablet daily.  It doesn’t need to be taken with food or anything like that which is really handy. I had to go to the Mater Institute of Neurology to take my first tablet. The nurse from the pharmaceutical company (Novartis) monitored my heart for the following 6 hours. They monitor it by performing regular ECG’s. All fairly straight forward. The only awkward part was that the nurse had to shave my chest in order to hook me up to the ECG machine. As a small bald guy having a hairy chest is just about my only redeeming manly feature so I wasn’t enthralled at having patches shaven from it. And don’t get me started on the post-shave itchiness. Anyway, all went well and I headed home without any issues. I was told I had to have blood tests every 3 months as Gilenya causes your white blood cell count to dip so they need to be tracked.

I took the new medication at the same time each morning as advised. Initially all was fine. It wasn’t always possible to take it at the exact same time but I tried to be consistent each day. After a couple of weeks, however, I began feeling very fatigued and couldn’t focus. I ended up having to take some time off work to recuperate. I haven’t had many sick days since returning from my diagnosis over two and a half years ago. However, this felt necessary. After a couple of days off and still not feeling any improvement I went to see my doctor. She took bloods and gave me a sick cert for the week. As a result I had to go back to hospital for more blood tests as my white blood cell count was significantly low. Luckily they have since risen slightly but I will be back in a few days to have more blood tests as precaution.

The week off gave me the time I needed to readjust my approach. With MS I have to be very careful not to lounge around too much. Resting is important but too much rest can really increase my fatigue. Tiredness and fatigue are not the same. In my experience a nap can alleviate tiredness whereas it can increase fatigue.  I start taking Gilenya in the nighttime (bang on 8pm) instead of morning with the approval of the Novartis nurse. So far so good although if I didn‚Äôt have an alarm set on my phone I‚Äôm almost certain I would forget to take it most nights. I‚Äôve also attempted to take on a couple of hobbies.

I first tried yoga. Each morning, before work, on YouTube. Then I went to a few sessions locally. Regrettably, I haven’t stuck to it. Although, I will attempt to make time to give those Downward Dogs another bash at some stage. Yoga‚Äôs benefits are too evident for me not to give it another go. I also started ukulele lessons last month. I’ve completed 7 half hour sessions to date. So naturally, I can picture myself up on stage playing all my favourite songs while you All gaze on in amazement. “He’s self thought ya know”,”Some people are just naturally talented”, “And that voice, wow!” … when in reality I’m patting myself on the back for just turning up on time for the lessons let alone learning something. I have to learn to not get ahead of myself. As with anything, the more time you invest in it the better at it you get. Both yoga and ukulele are efforts to have my mind and body thinking and performing in ways they haven’t done before. MS is known to cause (among many many other things) cognitive disfunction and I’m using these both as ways to fight back.

Every time I’ve sat down to write a blog over the last few months I’ve got sidetracked and haven’t got round to completing one. All part of being a new dad and familiarising myself to this new way of life I suppose. I used to have a lot more time to write these but what I’m learning is that time is an investment. There’s no point in rushing to the finish line of a race if you haven’t actually ran the distance. You don’t get anywhere. The older I get the more selective I have to be with my time. Gone are the days and nights of doing nothing but sitting in and staying up late playing Pro Evolution Soccer on the playstation without a second thought of what I did today or what I plan to do tomorrow. Ideally I’d like to be able to recall what I did today and plan specifically what I will do tomorrow. MS tends to tamper with my memory so I’ve started to write things down a lot more. I find this is a good way to reflect, plan and, in some ways, attain a sense of gratification. Setting small achievable goals allows me to build on former glories no matter how miniscule they were.

Nevertheless, will all this assist me in my ongoing battle with MS?

“The answer my friend is blowin’ in the wind” 



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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 ūüôā

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 badI 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






Against the Ropes

The rope-a-dope is a boxing fighting style commonly associated with Muhammad Ali in his 1974 Rumble in the Jungle match against George Foreman.

In competitive situations other than boxing, rope-a-dope is used to describe strategies in which one party purposely puts itself in what appears to be a losing position, attempting thereby to become the eventual victor.

The one symptom that seems to be a constant for anyone with MS is chronic fatigue. I’m still learning how to deal with this. A broken nights sleep is a regular occurrence. After work I get home and comatose on the couch sometimes before I even have a dinner. Then it’s a struggle to motivate myself to do anything for the rest of the night. I go to bed and could wake up at 4am and not start falling back asleep until it’s actually time to get up. Even, on days when I’m on the go for the whole day and don’t get to rest until late at night I find myself waking up at all hours. I’m finished college now (get my final results next week) but going to lectures after work I found¬†myself dozing off almost straight away. Lectures began at 5.30pm and by 6pm I’m¬†in the bathroom splashing water on my face to keep me awake. One night I let such a big yawn that the lecturer just stopped and looked at me with those dagger eyes¬†that say¬†“how dare you disrespect me”. I just apologised but it was a boring lecture to be fair.

When I first met with the neurology nurse in January 2015 she told me I was under attack and that I had to fight the fatigue. Exercise was recommended as my way to fight back. Easier said than done when your energy levels, as well as your confidence in your own mobility, are bordering on non-existent. I’m still learning how to deal with fatigue¬†but exercising and learning about nutrition certainly help. I posted recently a blog called “It Started at the Beginning” which is¬†a link to a couple of blogs I wrote without telling anybody before I start using WordPress. In one of the blogs I talk about being like a¬†Muhammad Ali of MS. Even now that seems like a crazy comparison. Although in the last few days¬†since his passing it makes more sense to me. Ali is someone that anyone can relate to in one way or another. One of the many reasons that make him¬†The Greatest.

When I really feel fatigued I compare myself to Ali against the ropes. Fatigue hits me like George Foreman or Joe Frazier and my body just has to learn how to deal with it. Sometimes I lay there knowing full well that I have to fight back but I need to be sensible. I think to myself Take the blows, there’s only so long this can last and when fatigue finally subsides I’ll be back off the ropes fighting stronger than before.¬†Fatigue’s not wearing me down, I’m wearing it down. I’m well aware that this particular symptom may never go away. In my head I make light of it but on the outside I am shattered and can barely string a sentence together. I’m best left on my own until it passes.

And then as wrecked as I am,¬†I find myself laughing in my head at stupid thoughts. I was pretty good at french in school and, although I remember very little of it now, I’ll be lying on the couch or bed or wherever thinking¬†Je¬†suis fatigu√©; this does not mean I am an overweight homosexual. To me this is hilarious. My friend Claire, knowing too well what I’m like, tagged me on a random photo on Facebook a while back of a guy who said he¬†couldn’t start a school presentation on whooping cough because he was laughing so hard at the first slide which was a picture of Whoopi Goldberg coughing. This is too funny to me. Even now I know people reading this will be thinking¬†that’s not that funny.¬†And that makes me laugh even more. These are the things that keep me going when fatigue has me against the ropes.

Last week in particular I felt really fatigued and it lasted for a few days. It had such a gloomy¬†affect despite the beautiful weather. I couldn’t snap out of the horrible negative feelings that come with fatigue. I was stupidly thinking I’m tired and the whole world can just feck off¬†until I’m not tired. ¬†I’ve never been good at getting up in the mornings but the walk to work usually puts a little spring in my step. I walk by a canal every morning with ducks, swans, pigeons, seagulls and god knows what else. I’m fascinated by it all. There’s always a Heron on its own lording over the other birds making sure they’re behaving themselves. He’s like a¬†T-Rex of the canal.

Screen Shot 2016-06-06 at 22.25.16
Look at him there Lord Muck; is it a Heron or a Crane?

Across from the birds and the canal is a primary school and the kids are generally in the schoolyard¬†most mornings with their teachers playing different games before their schoolday starts. In my “Chimneys, Rain and Hope”¬†blog¬†I talk about the same little shortcut on my route to work where I seen a young girl taking full advantage of a rainy morning when I was feeling sorry for myself. I always think back to that regardless of the weather. Fatigue tried, and for a couple of mornings succeeded, in diminishing my appreciation for this slight 2 minute diversion on route to work.

But I still think of Ali and the rope-a-dope. I’m coming back stronger and I’m flooring fatigue. In my case it is only fleeting and it’s a fight that I am up for. All the punishment that fatigue has inflicted on me pales in comparison to what I can achieve when I’m the one in control. Yes I have to lean against the ropes sometimes and allow it to overpower me for a period but once I’m in control that’s when I take advantage. Fatigue will slow me down sometimes but just like a slingshot the more it pulls me back the quicker off the mark I’ll be when it let’s go.

‚ÄúFloat like a butterfly, sting like a bee. The hands can’t hit what the eyes can’t see.‚ÄĚ

 RIP Muhammad Ali


Still laughing at this ūüėÄ